1. Try to reduce the stress in your life.
Migraine is a neurological disorder and is not caused by a stressful life. While excessive stress can certainly be a trigger, it is never the cause of migraines.
2. You look really good, not sick at all.
Most sufferers don't show signs of the illness unless you catch them in the middle of an acute attack. Such a statement is hurtful, so it's best to refrain from making this "compliment.".
3. It can't be that bad, I get headaches sometimes too.
Migraine, especially chronic migraine, is not a simple headache, but one of the worst pain conditions that can afflict people. It is among the most severe disabilities, particularly for women. It's not just the typical, usually one-sided, stabbing, throbbing, pulsating headaches that are present – no, the entire body is affected. Sometimes the attack begins with aura symptoms, and sufferers also experience nausea and/or vomiting, dizziness, exhaustion, and sensitivity to light and noise.
4. Get some fresh air and do more exercise!
Those affected love and need fresh air and go outside as often as possible. Moderate endurance exercise can have a preventative effect and is often practiced even during pain-free periods. During an attack, however, physical activity is impossible. Many are bedridden and feel severely ill. Furthermore, those with chronic conditions rarely have pain-free periods to exercise regularly.
5. I recently read about a therapy that can cure migraines. My neighbor's sister-in-law successfully used the "xxx diet" to combat migraines. Have you tried xxx?
While well-intentioned, these kinds of tips are more of a nuisance than a help to those affected. Most people are very well-informed about their condition and have already tried all the alternative treatments in the past, only wasting time and money in the process.
6. Find a hobby, distract yourself!
Would you advise a patient with a broken leg to take up a hobby to speed up healing? Distraction can be helpful for minor discomfort, but it won't prevent attacks or make them easier to bear.
7. Why don't you take a pill?
If only it were that simple. Of course, the attack will be treated, but usually it's not just the pain that's present, but also other severely debilitating conditions as described above. Furthermore, not every pill is reliably effective or sufficiently effective, and a single pill is usually not enough. Those not affected also often overlook the fact that those with a chronic form of the condition, in particular, have to take several medications daily for prevention.
8. Migraine is a women's disease.
It is true that more women than men are affected by migraines, due to hormonal triggers. However, this genetically determined neurological pain disorder affects both women and men.
9. Migraines are psychologically caused; the illness is trying to tell you something.
Migraine is an independent primary illness and never a symptom of another disease! Those affected are neither unwilling to work, mentally ill, nor seeking attention. They simply expect not to be discriminated against by prejudices of this kind.
10. You probably have a food intolerance. Have you seen a naturopathic practitioner? You need to detoxify, cleanse, alkalize, and cut out carbohydrates from your body.
Migraine is a distinct neurological condition, not caused by allergies. There is no poisoning in the body; nothing needs to be detoxified, eliminated, or alkalized. Diets are ineffective. What is important is a balanced, varied diet that includes sufficient carbohydrates. The brain can best and most quickly obtain the increased energy it needs from carbohydrates.
11. If you don't try this or that, no one can help you. Think about why you want to keep your migraines.
Such tips and questions, or similar ones, don't help anyone affected. They cause sadness, isolation, and discrimination.
Have you ever received advice like this? Do you know of any others? Feel free to add your tips in the comments…
Tips inspired by The Migraine Dirty Dozen
I have to write something here. My wife is often in bed with migraines. She's 70 now and she's suffering so much. Up until 10 years ago, my sister-in-law would always come to visit her, which was such a nuisance. My wife needs peace and quiet and no visitors! When I told her this, she said her sister, my wife, had these urges even as a child, always when she was supposed to help around the house. She's just putting on an act, and I come here to make her understand. So I forbade her from visiting anymore. My wife never complained about her sister. But today she's glad I made that decision!
Migraines are terrible, and those affected suffer greatly and are often misunderstood because migraines change a person and destroy so much in their life. I myself have had severe migraines since I was 13, migraine acomagnee, with visual disturbances, speech loss, paralysis, numbness, and very severe headaches. My eyes hurt in the light. The worst part is that I can't speak properly. In the beginning, people told me to stop taking drugs and get help, etc. I was labeled and stigmatized as a drug user. The migraine acomagnee started with just a few minutes, but over the years it became increasingly severe and longer. These migraines could last up to 73 hours during an attack, and I was completely exhausted. Doctors didn't take me seriously, and even after an attack ended, I didn't get a few minutes of rest before the next one started. This migraine has damaged and destroyed so much of my life. I lost jobs and was labeled mentally ill by doctors. Psychotherapists believed that with sufficient willpower, I could learn to work. The migraines destroyed my social relationships. Over time, I became isolated, and people avoided me because the migraines left their mark, leaving my eyelids dark and puffy. After a migraine attack, it took several days for the symptoms to subside. No one helped me during that time, and I was treated poorly by some doctors. Now, 53 years have passed, and I'm fortunate that the migraines have slowly receded and are now almost completely gone. After 53 years! Now, I've become cautious because I'm still afraid the migraines will return. Migraines are the worst thing that can happen to you. They change you. The best thing for me now is that I'm even headache-free, something I've never experienced before. And people with migraines have become, in my eyes, people who are severely tested but possess a fine character. Please never give up. I myself am now enjoying my new life after 53 years.
When I repeatedly told my (then) family doctor about my headache attacks, he said: “I also often have headaches, you just have to get through them.” To that – I think – there is nothing to add.
Reading all this, I wonder—have people, whether doctors, nurses, caregivers, or relatives, never heard of whitefish? The staff at the Kiel Pain Clinic are the exception. I had a pain attack while at my family doctor's. He actually said it was just a migraine! Of course, I switched to another one. Perhaps he meant it ironically? I don't understand that!
My grandmother said when I got home: "When I get that, I drink a strong coffee with lemon, then it goes away." I didn't want to try it, so she said: "Then you can't be feeling that bad yet." A friend advised me: "Turn to God!" I didn't want to do that either. Her reply: "Then you're not feeling bad enough yet! God heals everyone—unless they deserve it!"
So I took a Tristan and lay down in a dark room! I learned to do without—for my own sake!
C'est exactement ça, j'ajouterai même la phrase qui tue de proches: "Quand est-ce que tu vas te soigner?"
C'est pour moi les pires choses à entendre car elles nous culpabilise, nous démoli, nous considère comme des personnes idiotes qui aimons souffrir !
The migraines have been depuis que j'ai l'âge de 6 ans et j'ai tout entendu, il est difficile d'être compris et de s'intégrer car on ne peut pas prédire ni même vivre de la même façon.
Je félicite toutes les personnes qui vent avec un/une migraineux de manière bienveillante, sans jugement et en positivant.
I don't want to live in a couple without destroying the humour of my own heart, but I prefer to have a life that is "subir" une souffrance.
Courage à tous les migraineux/ migraineuses
Merci for this article
C'est exactement ça, j'ajouterai même la phrase qui tue de proches: "Quand est-ce que tu vas te soigner?"
C'est pour moi les pires choses à entendre car elles nous culpabilise, nous démoli, nous considère comme des personnes idiotes qui aimons souffrir !
The migraines have been depuis que j'ai l'âge de 6 ans et j'ai tout entendu, il est difficile d'être compris et de s'intégrer car on ne peut pas prédire ni même vivre de la même façon.
Je félicite toutes les personnes qui vent avec un/une migraineux de manière bienveillante, sans jugement et en positivant.
I don't want to live in a couple without destroying the humour of my own heart, but I prefer to have a life that is "subir" une souffrance.
Courage to all migraineux/ migraineuses :'(
I've been struggling with migraines since 2018; I'm 28 now. I heard every one of those clichés countless times in the first year alone. For two years, I had 20-25 attacks a month, with intensities ranging from 1 to 9 on a scale of 10. After about 2.5 years, I had a migraine for 2.5 weeks straight. After that, I only had 10-15 attacks a month, trending downwards. Now, after roughly 7 years, I'm down to 5 attacks a month. I couldn't tolerate most medications until I found one I could take for acute attacks. There's no preventative medication available. These days, I'm finally at peace and hardly ever hear those clichés anymore, but I'm not going to let them get to me either. Reading how many others are going through the same thing makes me incredibly sad, but at the same time, it gives me a sense of recognition that makes me happy.
To all who are suffering and to all who are truly helping. Thank you.
After over 10 years without a migraine (applause to my brain!), I had my first attack yesterday and was sure I was going to die.
I went to see my family doctor, who immediately gave me a referral to the hospital. There, I was quickly put in a dark room and hooked up to three different IV drips, one after the other.
I went home feeling quite groggy but relatively pain-free.
And the only thing I had to listen to was: "Why didn't you come yesterday after the painkillers didn't work? You didn't have to endure it for so long! Now go home and get some rest."
Everyone out there could learn a thing or two from these wonderful professionals!
Hello, thank you for finally putting it succinctly! I've lived with migraine attacks for 40 years, which sometimes last three days when the weather changes. But never longer. I feel so sorry for the people who have to endure them for much longer.
At some point, I accepted my migraines; they're part of my life. However, you do feel vulnerable and at the mercy of others. I no longer go to doctors who don't take me seriously. It's humiliating to hear things like, "Everyone gets headaches sometimes," or, "You're overreacting, it can't be that bad," etc. Or when people offer their unfiltered opinions, like, "Why don't you massage your neck, maybe that'll make it go away?" These days, I don't justify myself or apologize anymore. My migraines, my life, my pain, period. If someone doesn't understand, tough luck!
I'd also like to leave a comment here… I often have two migraine attacks with aura within a few hours of each other… a senior neurologist told me that this isn't possible – I should just take a triptan, then I'll get through the day… he does it that way too… what more can I say…
I've had migraines (menstruation-related) since I was 10 years old. I'm 49 now. Most of my family on my father's side has a history of migraines. It varies in severity, but I always have one or two attacks a month. I also take preventative medication when it gets too bad. I've had more than one migraine attack in my life. Eventually, tears just stream down my face because it simply won't stop and hurts so much. I'm a doctor and treat myself. The worst part is that I'm still embarrassed about my migraines. I want to function and perform. I often go to work before I've fully recovered, and I lie to acquaintances ("Sorry, I can't make it, I have to work late today"—when I'm actually lying in bed vomiting every ten minutes). Only my family and close friends know that I have migraines. I simply don't want to hear stupid advice that I've heard all too often. Why do I keep it a secret? Probably for exactly that reason—the lack of understanding and the feeling of being labeled a psycho. I'm always glad when the headaches come on my days off, then it's less noticeable. I've only had one sick day so far this year.
Hi, it's awful what you read here. I know something similar. Like being told you just need to relax, loosen up, then you can participate in choir practice, for example. And "don't cancel because of a migraine, that's impossible." And "a really great tip": Japanese medicinal plant oil. :(
But it's good to read that there are many people who know and understand exactly what migraines are like.
Today I simply have to write about something I experience so often.
What do you actually say to people who don't understand what migraines are?
When I hear things like, "You're just making a fuss," or "You're a hypochondriac," or the old term "hysterical," why do doctors still use those terms? As a patient, am I allowed to respond with, "You'd benefit from some further training or education about migraines, Dr. [Name]..." or "Please educate yourself about migraines"? Is that even allowed? Where do we live, anyway? Somewhere outside of civilization?
I've had headaches since I was 15, and migraines started in my mid-twenties; eventually, the aura developed. I raised two children with them. Do you know what my brother said? “It’s your own fault for having children! That’s what comes from the pregnancies! What he couldn’t have known is that they are adopted children. A pair of twins. My brother was abroad for many years and didn’t know! Only that I have twins! So much for his theory! May 2025—a neighbor was explaining to me what migraines are! In all seriousness, she said: “They’re orgasms in the head, that’s what happens when the man isn’t there or
is impotent!” She should know, she continued, because she also gets headaches. I wonder if it really is 2025 or if the ignorant people are stuck in the 60s/70s.
Employers in the healthcare sector:
“If you continue to call in sick so frequently, we will need a doctor's note from the first day.”
(I am absent for about two days once a month)
“You can always work from home if you're not feeling well.”
These comments are causing me additional stress. It feels like I'm being accused of faking it or even playing hooky, even though my supervisor knows I have several chronic illnesses. This psychological strain is causing me to get migraines even more frequently.
Unfortunately, I have the same problem —don't be such a baby, I get headaches too.— A doctor says it's all in your head! Completely psychosomatic!
And this is in 2025!!! There are actually doctors, or at least one who said so!
About me! I've had headaches and migraines for many years, and now I'm being accused of being an avoider and not working on getting ahead in life. Yes, I've learned to "avoid" triggers, and that makes me feel better. I only have a few people who stress me out. Or activities that trigger pain. When you've had constant headaches for over 45 years and migraines 15 days a month, you know how you should behave!
Peace and quiet do me a world of good. Unnecessary conversations irritate me. Then the migraine follows. If I tell it "like this," people say... You're hiding behind your migraines...
Or you don't want it any other way! —-If you don't want the pain, it will disappear! (an esotericist told me this)
I'm shocked at how widespread this problem is. I always thought it was just me!
My personal "highlight" was when, during a hospital stay, a nurse asked me if I was perhaps addicted to painkillers. "I only take painkillers for fun, you know..." (Whoever finds the sarcasm can keep it.)
Hello to all my fellow sufferers! :-)
I'm finding it hard to believe how common this is. I always thought it was just me. Even medical professionals (!) have told me things like that. They said it was all psychosomatic; I was ordered to exercise in the blazing sun during an acute attack; I shouldn't take so many painkillers; I was asked if I was addicted to pills; I absolutely should not stay in bed, the pain would definitely go away if I just did some exercise.
From the doctor:
"It gets better during pregnancy or menopause."
"Try drinking more water and, in acute cases, a glass of cola."
"Migraines are not life-threatening; many people have them."
From fellow human beings:
"Migraines? Oh yes, I get them quite often too. I can understand that so well. I always take a paracetamol or ibuprofen, then I feel fine again."
This is absolutely unacceptable! My husband (ex-husband) actually said, "You have to drink a proper shot of schnapps every day, or a quarter liter of whiskey!" Even the neighbor always drank herbal schnapps for pain! Where do they live? My brother once said, "Go to a faith healer: here's the address!" Over the course of my life, I've heard a lot, from doctors who dismissed it as hysteria to men who wanted to cure it with sex. Or they called it nonsense, because you don't have that sort of thing in the countryside!
Finally, I had a stay here at the Kiel Pain Clinic. Thank you to all the lovely, kind staff of Dr. Göbel's clinic. I hope you are all well again by now!
I've had migraines since I was 30; I'm 56 now.
I've lost friends because they don't understand when I cancel plans.
"Well-meaning" advice just adds to the stress:
"Take an aspirin." "
You need to live a healthier lifestyle."
etc.
Best regards
Migraines are a real pain…sorry!
I've had them since I was four, and I'm 46 now. Up until about 20 years ago, I had them regularly, with vomiting, sensitivity to light and sound, and severe pain. Eventually, nothing helped anymore.
Then I met a neurologist who prescribed me high-dose magnesium with B vitamins. A course of treatment from the pharmacy, made by Orthomol. So I took it.
It took several weeks, but it began to significantly weaken and reduce the attacks.
My attacks are completely different today; I already had one where I started seeing flashes of light and then lay motionless in bed for over 8 hours, unable to even talk.
It starts with a tingling left hand, heat throughout the body, speech difficulties, etc., but no more nausea. I immediately take a 600mg ibuprofen. And I take magnesium and B vitamins daily. I only have a few mild attacks a year now, the severe ones every few years. For me, the triggers are physical overexertion and stress; those are the severe attacks. The mild ones are caused by lack of sleep and before my period.
All in all, I can live with it quite well. For me, it's important to get plenty of exercise, enough sleep (but not too much, that's also bad for my head), and to relax in nature whenever possible.
Warmest greetings to you all!
I often had to retake exams during my final year of high school because I had a migraine on the day of the exam due to the preceding pressure and studying. I should mention that I generally suffered from migraines and headaches quite frequently, not just before exams. But this was interpreted as an excuse, especially by my classmates. "She's just trying to get special treatment again." But retaking the exams put me at so many disadvantages because other exams were already scheduled, requiring simultaneous studying... I could barely participate in sports either. Even though my teacher received doctor's notes, she attacked me and made comments like, "You know that's completely unacceptable!" I also heard things like, "I get headaches sometimes too. I just take a pill and sleep it off," or, "Are you drinking enough water?"
Neurologist: What problems are you having? Me: I need help because of my constant migraines. The neurologist laughed and said, "Migraine!" (His tone was like, "Oh my God, another one who thinks she can diagnose herself."). I described the different types of pain, whereupon he wordlessly wrote me a prescription for migraine tablets. Not a word of apology for his arrogance!
And then you're supposed to trust doctors and openly discuss all your problems…
Hello to Kiel!
Since 1994, after a very, very bad car accident (rear-end collision, the car rolled over; I was a passenger and my head hit the side window, and I lost consciousness. I hung upside down in the car for about 7-8 hours. My girlfriend, who was also the driver, literally left me hanging. Since then, I've suffered from migraines and every kind of headache imaginable. Even when I'm happy, my head feels like it's going to explode, and I have to immediately switch to neutral, otherwise it feels like it's going to burst!
Before, I was perfectly healthy, didn't even know what a headache was, and even laughed at Montusuma's revenge in Mexico because I had no symptoms. But then, three months later, the accident happened. I was 22 then, now I'm 52, and I can only say, yes, a lot of it rings true. I also have a GP who doesn't seem to understand certain things, including menopause, and various other things are simply questionable to him – in other words, only he has the knowledge. Well, nowadays I'm my own doctor. I've been 100% disabled for about eight years, as the accident did a lot more to me.
Today is perfect migraine weather – I'm extremely sensitive to the weather; I was weather-sensitive before the accident, now everyone is cheering, the sun is shining and I'm freezing, I darken everything, don't want any smells around me and need peace and quiet – that's all.
It's very annoying for friends because you can never plan, I often have to cancel because it's simply impossible, I don't even leave my apartment anymore.
In almost all the comments I've read, it seems that the condition appeared suddenly or was inherited; there's hardly any mention of a serious accident involving severe cervical spine issues, or perhaps I've missed it.
It's difficult to deal with, but it's better to cancel everything, rather than struggling through it—I did that for years and consumed vast quantities of paracetamol. Eventually, it stopped working altogether, so I gave it up. A headache specialist here in Munich insisted on prescribing me an antidepressant. After three days, I'd gained three kilograms, experienced all the side effects, and went back. He then said, "Then you'll just get a different one." I simply said, "No, thank you," and left.
I think we're all more or less exceptionally sensitive, with good antennae for things that "normal" people can't perceive. And the world needs that – we are strong and special and should listen to ourselves when we have a fit, and then everything else just has to wait. Like the flight attendants always preach: help yourself first, then be there for others.
About 30 years ago, during my written A-level exam, I had a terrible migraine attack. I was in awful pain, nauseous, and vomiting. I asked to be allowed to stop and go home. The proctor refused and offered me a kiwi instead, saying, "I once read that green apples help. I don't have an apple right now. But why don't you eat the kiwi?" And with that, he sent me back to the classroom. Honestly, I don't know how I survived that exam. I had to go to the bathroom and vomit constantly. Today, I would consider that almost negligent failure to render assistance, but back then I didn't dare to stand up for myself.
Later in life (I still suffer from severe migraines), I often heard from people who didn't have them, "If you really want something, you can do it." But now I've learned to reply that it's not always possible. And that's okay.
“Don’t be such a baby, I have a headache too.” “Don’t look so angry, don’t let the migraine ruin your mood.” And when that’s combined with depression, I hate the saying, “Did you take your pills?”
This unempathetic attitude is what one would expect from enemies, but not from friends or family
No one should presume to give advice (unfortunately, the contrast is very low here while writing! It's almost impossible to read, which is tiring and then gives me a headache). Why is the writing so terribly light?
What I'm trying to say is, no one should presume to give "good" advice to someone who has no clue about migraines.
It started when my sister said, and I quote: "You have three children...it's your own fault you get headaches."
She's four years older than me, unmarried, and childless; of course, she knows all about it.
When I sent her a card from the pain clinic, her reply was: "I didn't even know you had migraines!" So much for her knowledge!
My father's opinion was: "I need to talk to your husband—he should really...no, I'm not going to write about that here!"
I recently had an attack in the middle of school, and the response to it was:
“You just want to go home again”,
“Just drink some water”,
“She’s just playing, don’t be so bad”,
“Have you eaten anything today?”
I should mention that I've had frequent attacks over the past few months and have therefore been staying home. I've had them about three times a week. For this reason, I always carry painkillers with me so I can somehow manage to get home.
My friend somehow helped me up. The teachers tried to make fun of me until my friend and I ran back up to the office (I was initially in the classroom at the top, then we had to go all the way down to the lockers). My teacher, who luckily is my favorite student, came to me and my friend, and other teachers gathered around me and watched as I struggled. The students and teachers who had wanted to make fun of me saw how badly I was hurting, barely able to breathe and stand. I still don't know how I got home.
But one thing I can't get out of my head is the comment:
"Just drink water."
Yeah, sure, I could
have drunk 1.5 liters by 11 a.m. But what if I need something really strong now because the painkillers didn't help? Here are
some tips on how to really help:
1. Just stay quiet.
2. Ask about the
person's other symptoms (not all symptoms are the same; there can
always be other symptoms) so you
can best prepare for them.
3. It's best not to attack the person.
4. Avoid making stupid comments.
My mother and my aunt suffered from terrible migraines. They were always knocked out for several days. What made it even worse for my aunt was that she also had cancer, and her colleagues accused her of faking it. Her cancer was incurable.
Fortunately, my mother had a more flexible job and could manage her own hours. In addition to migraines, she was highly allergic to many foods and nickel. She was later diagnosed with cancer as well.
I'm glad that I "only" suffer from aura migraines, which have occurred very rarely so far and only last 20-30 minutes. It first appeared during pregnancy, then 12 years later after my mother's death, and since then more frequently in stressful situations. One of my children also has aura migraines. I was prescribed Maxalt for it, but I've never taken it because the symptoms are so short-lived.
I have other health issues due to another chronic illness, and I've noticed how everything is downplayed. When I'm not feeling well, I often hear things like, "I'm not feeling well either, I have pain here and there." "That's just old age, it's perfectly normal."
I receive a full disability pension; I don't get that for a few minor ailments! It's awful that only visible illnesses are taken seriously.
Hi,
many thanks to the Kiel Pain Clinic for this article on migraines. Instead of constantly justifying myself, I'm going to simply show them your article, hoping they'll finally get the message.
I had my first migraine attack when I was 12. Since then, I've had attacks every now and then. And there are always problems due to the lack of understanding from others. People simply associate migraine with any kind of headache, or use it as a general term. But that's not the case. Just having headaches would be wishful thinking for someone who suffers from migraines. Imagine not being able to drink anything without it coming right back up, and eventually ending up on an IV drip.
Sayings like: "Well, I had a bit too much to drink this weekend" are standard.
Migraine… Well, unfortunately, it's a limitation that's difficult for outsiders to understand.
As many of my predecessors have also described, the association of migraine = headache is common.
When a migraine sufferer mentions that their headache is often accompanied by nausea and vomiting, others often comment with, "I also had a terrible headache and threw up this weekend."
Awkward, especially if your colleague was just talking about an amazing party three minutes earlier. Seriously, people: that has absolutely nothing to do with migraines!! Just drink less, and you won't get this "type of migraine" (LOL) at all.
Migraines – at least for me – are accompanied by unbearable headaches and other symptoms such as sensory sensitivity, nausea, and vomiting. My field of vision narrows and my sensitivity to light increases. The only thing that helps is lying down, opening the window, and lowering the blinds.
I also know someone in my family who is extremely sensitive to noise. This person can hear a pin drop three floors down and finds that "noise" unbearable.
Thankfully, I'm spared from that.
Nevertheless, when a migraine hits, you're out of the loop. Your concentration and perception completely disconnect from your body.
For me, weather changes (changes in air pressure) are the trigger, which is why I'm more affected in autumn and April (which is unpredictable).
The worst part is that you can't actually see it. At best, you might look a little pale. And what really gets to me are the comments that carry the hidden message that I'm faking it.
I believe I inherited my migraines from my mother. And I know I've passed them on to my children. My eldest has a similar form to mine. My son often suffers from "silent migraines" and experiences neurological episodes with temporary one-sided blindness. The worst part is with my youngest daughter (14): she has a 100% disability (intellectual and physical) and is nonverbal. She can't tell us about any throbbing headaches accompanied by nausea or other neurological symptoms. When she has sudden, painful crying fits, I try to gently determine if it's a migraine. I feel her temples and gently massage them. If this calms her down, I assume it's a migraine attack, as I also experience relief when I massage my temples during a migraine. For little ones, ibuprofen or paracetamol fever syrup usually helps. This quickly brings her pain to a more manageable level. She'll then become drowsy and fall asleep quickly.
Many years ago, I was chosen as a "test subject" when triptans were first introduced. Not all triptans work for me. But sumatriptan works quite well. However, things aren't all good after taking it. I still feel out of sorts, weak, drowsy, and my senses are heightened. Only pain and nausea are effectively reduced.
I wouldn't wish migraines on ANYONE.
And to all the doubters: when a patient diagnosed with migraines talks about having them, it throws that person off track for a few days. An Alka-Selzer won't fix it.
And please refrain from giving unnecessary tips and comments. They're completely useless!
I suffered from migraines as a young adult, and they've returned now that I'm going through menopause. I take hormones for other conditions and have decided to gradually reduce the dosage, as that's where the problem started. Currently, I have migraines an average of 15 days a month, which is about one attack every two to three days a week. Triptans are the only thing that helps. Sometimes I get the impression they just postpone the attack. The attacks often begin with food cravings and yawning fits, accompanied by intense chills, nausea, extreme sensitivity to noise, and the typical feeling of being unwell. My family avoids the problem. We don't talk about it; what's the point? I probably seem grumpy and lethargic during these times, and I do everything slowly (otherwise my head just throbs even more), but I still have to function, even though I feel terrible. I've also heard the question, "Is that even migraine?" “Then just take enough painkillers” (but they don’t work) or even “When you’re 60, this will surely stop.” Who else do you advise to simply endure years of pain? I often feel like I’m not taken seriously. The fact that I can only ever plan at the last minute and can never make reliable commitments is met with incomprehension or met with grumpiness. I simply can’t participate in an event when I’m feeling unwell or have little desire for socializing, because I’m a different person then. I deal with all of this on my own, and even the gynecologists see no connection to my medication; organically, everything is fine, they say. That’s why I’m now reducing my hormone dosage as another attempt to get this under control. I’d rather be drenched in sweat and sleep poorly than endure this state much longer. Luckily, there are triptans, which I only use in carefully measured doses. And I still have hope that there’s an end in sight somewhere. And when I say, “Today I finally feel my best again and want to make the most of the day,” I often get the feeling that no one understands what I really mean and how happy a migraine sufferer is when the storm clouds in their head have cleared and they can finally function again.
I've turned the tables on them for quite some time now. If someone makes one of the usual nonsensical and uninformed remarks (like the ones listed above), I ask them in detail what they know about migraines and where they got their information. Then it's just hot air, and I make that perfectly clear by referring them to the expert information on the Kiel Pain Clinic's website.
Then there's peace and quiet.
What particularly annoys me is that my colleagues regularly say they have migraines but then go to work anyway. A few years ago, one of them told me she couldn't imagine having a migraine. But for the past few months, she's been using that term whenever she has a headache. In our office, the term is generally equated with headache. But a migraine isn't just a headache. It affects the entire body. All the senses are hypersensitive and easily irritated. I usually have to vomit every 10 to 30 minutes. And this goes on for hours. It has to be dark. Sitting in front of a screen and working? No way. I'm actually lucky because the intervals between my attacks are still relatively long. About every 4-6 weeks. An attack knocks me out for a maximum of 3 days. I feel guilty every time I have to stay away from work because of my migraine. Partly because my colleagues work despite having a "migraine." This might sound strange, but I feel like it downplays my illness and makes me feel like I'm not taken seriously. In my experience, many people still consider migraines synonymous with headaches. To put it mildly, I think that sucks. -.-
I wish that would change.
To all the migraine sufferers out there: hang in there, don't let it get you down, and do exactly what you need to do when you have an attack. <3
A really stupid comment from an acquaintance about migraines: you need more sex. I don't think there's a suitable answer to that, except that I wish you a three-week migraine yourself.
In the summer of 2015, I received my first rheumatoid arthritis diagnosis. Shortly after, I had my first migraine attack just before my period. It came completely out of the blue and lasted almost a week. Since then, I always get them just before my period, which is partly a sign (for me) that it's about to start, haha.
However, it's gotten progressively worse.
Now I also get migraines when I'm stressed or upset, and unfortunately, nothing helps except sleep and rest.
People always tell me I shouldn't make such a big deal out of it and that it's not that bad. I always keep my pain to myself, but I withdraw and prefer to sleep during the day instead of doing anything.
In fact, I even have periods where my vision is impaired or so sensitive that I can't see anything at all.
Things got so bad after I developed rheumatic fever. The fever eventually stopped, but the intensity of the migraine attacks hasn't really decreased.
But when I was in Thailand, I got an oil there, and since then I've used it for every attack, which often shortens the duration to just 1-2 days, or with luck, even makes it a bit better on the same day.
I had no idea how different migraines could be until acquaintances told me about their migraine experiences and explained that they can also manifest in other ways.
Not being alone in this is often a relief and gives me some support.
“Drink espresso (but not too much, it’s bad for your stomach), eat pretzels!” That was my mother’s advice and her only “treatment” for years. I was never seen by a specialist or even a general practitioner for my severe migraines, even though I often vomited for days on end, was disoriented, and dehydrated. My mother is a doctor.
I'm currently searching for anything and everything to alleviate my migraine attacks... I came across this article. I wanted to add my two cents.
I've only had migraines since I was about 27 (2016). I suspect that the second concussion I had a few months prior and a nervous breakdown are the causes – before that I had occasional headaches, but not migraines. And these migraines are really something else.
At first, I didn't know what it was or why I was getting such severe headaches. It ruined many very important moments in my life. I'm talking about once-in-a-lifetime moments with my closest friends.
Whether I have migraines or cluster headaches is still unclear. But it's probably migraines, since I experience a mild aura about every 5-6 attacks. However, as soon as an attack starts to develop, I know the next few days will be difficult, if not impossible. Sometimes I'm lucky and can treat the pain early enough with sumatriptan. Sometimes it's too late, and then nothing helps. And other times, I have excruciating headaches for up to 7 days, and almost no one, except my doctor, believes me when I say it completely debilitates my life. It's like a pressure that can't escape my head. I've already been able to rule out the worst possibilities – thanks to an MRI – but there's still a long way to go before I can find the right treatment.
Skulls thousands of years old with carefully drilled holes are still being found. In my opinion, these were the first 'proto-medical' attempts to treat severe migraines. Sometimes I long for a 'release of the pressure and throbbing,' which is of course completely insane, but sometimes I could throw myself off the balcony from the pain.
I hear far too often that only women get migraines. Or even worse, and this is missing here: "You probably just have a hangover." I've hardly drunk anything for years (once every few months).
Or a complete misunderstanding of the level of pain
…
From me, it's: “I broke 6 ribs and my arm all at once in an accident and had to lug myself and 20 kg of stuff 13 km on foot for over 5 hours through Patagonian wilderness! I know what fucking pain is, you soft city slicker!”
The headaches might not heal in months, but they are often more intense than that. And they're in the head. Where the "self" resides.
There's so much to tell, but I'll continue my internet search, hoping to find something at 3:15 in the morning that will help ease the pain. Because the pain is too intense to sleep.
Stay strong, my dears, and don't let yourselves be defeated. There are many of us who can understand each other.
My female colleagues often say things like: "You probably haven't drunk enough," or "You need to drink more." It also helps with my headaches; it'll go away right away..
Since May 2020, I've been suffering from migraines suddenly and immediately became chronic, including chronic tension headaches. Initially, I had a migraine every single day of the month. The accompanying symptoms were also really bad. At first, I somehow managed to drag myself to work. By September 2020, I couldn't take it anymore and went to the hospital. I looked like death warmed over and was completely emaciated. However, the neurology department didn't take me seriously and claimed the migraines were psychosomatic. In other words, I received no preventative medication whatsoever, except for amitriptyline for the chronic tension headaches. I had to insist on that, though. I was then supposed to undergo psychosomatic therapy at the clinic. This started in February. It was hell, as I still had migraines 30 days a month, and then there were all the additional therapies. The doctors there had absolutely no clue about migraines. For example, during a consultation, the doctor remarked that I didn't look well at all. I simply said that I had another terrible migraine and was going back to bed. She replied that the weather was lovely and I could sit in the sun or go for a walk. The therapists weren't any better, some even claiming I was faking the migraines to avoid therapy or that I should just talk to my migraine. After repeatedly pleading with the head physician, another neurological consultation was finally arranged, and luckily I saw a neurologist who knew what she was doing, but she just wasn't available in September. She was appalled that I hadn't been on any preventative medication and prescribed Topiramate. So, starting in April 2021, I finally had preventative treatment. Unfortunately, it didn't help, and I tried several others. I then received Botox at the pain clinic, and since July 2022, I've been taking Emgality. Of course, I lost my job during this time and will soon be living on welfare. Since March, I've been able to apply for jobs again because I'm currently doing quite well. I'm now down to about 15 pain days per month, which is still a lot. However, the attacks are usually manageable. Unfortunately, that wasn't the case at all before the antibodies, as triptans and similar medications didn't work. I hope it stays this way or even improves further.
Nevertheless, I'm extremely angry about how I was initially treated, or rather, not treated, by some doctors. If they had reacted more quickly, my financial situation might be better now.
Since the beginning of the year, I've been having migraine attacks almost every weekend, so out of sheer desperation I tried beta-blockers… It backfired; the side effects were too severe… Now I'm back to taking painkillers to manage the pain.
And my ex-boyfriend (that's why he's my ex now) told me far too often that my migraine had ruined my weekend again… Most people don't even realize what they're saying and how hurtful their comments are. I've even heard these well-meaning pieces of advice from my parents…
Hello,
I just had to listen to my sister telling me to stop taking my painkillers… as if I take them every day.
The fact is, either I take a simple 400 mg ibuprofen at the beginning, when I have mild headaches, to be pain-free for at least three days and nip the migraine in the bud, or I wait until the migraine really kicks in and then even three triptans at once won't get me pain-free!
So why wait until it becomes unbearable every time? I'm glad I don't live in the USA, where there's a gun in every other nightstand drawer; I think I would have used it by now, just to make it finally stop.
For me, it always lasts 3-4 days, and very often I can't eat anything for two days. Sometimes I even vomit up still, room-temperature water and then have to wait up to 35 hours before I can drink anything again. I also vomit up any pills I take, and liquid pain medication too, because I can't even drink water. If I open the bathroom door, I have to vomit just from the sight of my toilet. Brushing my teeth is impossible, so I go to the garden to pee. So why wait when, 99.9% of the time, I don't get normal headaches, only migraines, with light sensitivity, even if I'm completely pain-free in a daylight-free room if I take medication in time? This includes dizziness, hypersensitivity to smells and wrinkles in clothing and bedsheets, and sometimes walking in front of doorframes because I can't tell where I end up and the door frame begins. I also have a reduced sensitivity to pain; for example, I only noticed my sprained wrist after the attack, even though it had already swollen beforehand. I got my sleeve caught in the doorknob and kept walking, resulting in a sprained wrist, a bump on my head, a bruised knee, and a graze on my arm. Being able to work when you can't even leave a room without risking injury, or when you accidentally step down a flight of stairs and then sprain both wrists and ankles, and can't even use crutches to protect your ankles, is definitely not possible! You're essentially a dependent requiring round-the-clock care.
I tried for years without painkillers because they never worked anyway, but that was only because I didn't take medication when the headaches started, but were already at the stage where I just wanted to blow my brains out to make them stop, not because I didn't want to live!
I recently learned at the dentist that there are ointments for the pain of anesthetic injections. Why can't they tell patients that there are ointments for injection pain? – I haven't been to the dentist in 26 years because of my fear of needles. Why do children have to go through such awful traumatic experiences until they can no longer be treated because of their fear of needles, and then even then, once they're adults, they resort to painkiller "games," like overdosing on pills or washing them down with lots of strong alcohol, hoping it gets into their bloodstream faster than they vomit it up? And all this just because if you say you don't want needles, you're immediately dropped like a hot potato!
It makes me absolutely furious that no one told me I have to take them at the beginning of an attack, and it drives me absolutely crazy, until I'm about to explode, that I should just let the migraine happen (to those around me) and then everything would just fizzle out! I've had migraines for at least 30 years now, so I have plenty of experience with what it's like without medication, and I'm not going to let that happen anymore, knowingly trudging into the hell of pain and then hearing comments like, "You could do a little housework" instead of just lying in bed! It's just as awful as if they were stabbing me in the chest! No wonder I'd rather be single and live alone than constantly have to justify myself.
Luckily, I've figured out what works for me. I just need to learn to rise above the hate comments from my surroundings and to act independently of “no wonder, you’re taking too many pills” and to assert myself against all resistance.
I can only agree with the comments here! I've received all these well-meaning pieces of advice myself. "It's just a little headache," etc.
Unfortunately, after a while, you're no longer "part of the group, but just on the sidelines." No one wants to hear all the cancellations, maybes, and then not participating after all.
Since a car accident in mid-2018, I've had migraines 24/7. They make me want to pull my hair out, visit the toilet, and when time allows, lie down and try to sleep, which often only works with medication like Melperon. It's maddening. And it's incredibly exhausting for my loved ones too! For many years, I've also had aura symptoms like visual disturbances, speech difficulties, fainting spells, etc., which accompany me. I don't leave the house without triptans! If I forget them, it ends in a panic attack. I recently tried acupuncture again. On the way to my doctor's office on the highway, I realized I was having an aura. Thank God I was already on the exit ramp. I managed to park my car so I wasn't in the road, and then everything went dark. I stood there for three and a half hours, completely blind, on the side of the road, getting increasingly nervous. Police officers asked me why I had parked so badly. It was difficult to explain what was happening. Since that incident, I've carried a document from the pain center that I can present. Only through my visits to the pain clinic have I regained hope. It's very exhausting and incredibly frustrating that I have to live with this, but I always have the opportunity to return to the clinic.
As they say, "You won't get it until you get it."
As soon as someone finds out I have chronic migraines, I hear all sorts of things. And at the same time, they don't understand how much suffering it causes. I can relate to a lot of what they say.
Unfortunately, I'm experiencing the same thing. During a therapy session, the nice lady said, "You're hiding behind headaches!" "No, that's not it, it's migraines!" But in her eyes, that wasn't a significant explanation. During the rest of the session, I couldn't concentrate on the conversation anymore. She kicked me out
because I supposedly wasn't capable of therapy! She hadn't missed the fact that I was vomiting. Luckily, I then had an appointment with Dr. Heinze at the Kiel Pain Clinic.
It's awful what you have to listen to sometimes, I know the feeling. Once, my husband was so distraught when I had a migraine attack and just cried and hit myself that he took me to the emergency room. There, they barely paid any attention to me and left me lying on that narrow "bed" for hours. I was vomiting three or four times an hour, which prompted a nurse to tell me I shouldn't breathe so stupidly, implying I was going to throw up..
I can only agree with the comments here!!!
People who don't suffer from migraines simply can't imagine how debilitating an attack can be and should refrain from offering well-meaning advice.
Since I was 13, I've had regular attacks, which thankfully only last about a day. As a schoolboy, it always started promptly after school. I could only spend the rest of the day with the curtains drawn, either in bed or over the toilet. The next morning, I had to drag myself to school in agony, where it finally stopped during the third or fourth period.
Then I visited a neurologist, who recommended autogenic training and keeping a migraine diary: the former didn't help at all, and what good is it to know that red wine, cheese, chocolate, or sleeping in on weekends frequently triggers attacks? Because even with a perfectly adapted lifestyle (which I tried for a long time), the attacks became somewhat less frequent, but simply couldn't be avoided. These things are merely a trigger, but not the cause, and the famous change in the weather simply cannot be influenced.
As a student, I was able to participate in a double-blind study testing triptans at the university hospital in Aachen. Back then, the medication was administered by injection. I was lucky and received an appropriate dose from the doctoral student conducting the study. After the second injection, my migraine vanished within minutes! To see how well it worked, I immediately followed it up with a 100 km bike ride. Unfortunately, it took many more years before triptans were finally approved.
It's a blessing for all migraine sufferers that triptans are now available to everyone. Since then, I always carry a dose in my wallet. Without the medication, I would be sick for a day every few weeks. I'm now a university professor and, thanks to the medication, haven't had to cancel a single lecture in 12 years.
I found the often well-meaning advice, "You're just too stressed," and similar comments incredibly unhelpful. Especially when you have responsibilities at work and a family at home. Surely, giving up on both job and family can't be the solution.
I know I'm only a mild case and that for many migraine sufferers, triptans offer little to no relief. You all deserve consideration and understanding from those around you, not well-meaning advice!
Thank you for the great article, which I (unfortunately) only discovered today!
Wow! I was just laughing at the article itself because I've heard ALL the "no-go" phrases mentioned there in one form or another over the last 40 years.
Then I wanted to quickly read the comments – and discovered that an unbelievable number of people affected have shared their suffering.
I'm very happy to be admitted to the inpatient clinic in Kiel in December. I'm really hoping to wean myself off medication. Since 2018 (that's already four years!), I've considered my migraines chronic. With up to 24 days of pain a month, I suppose that's a reasonable assessment. I don't leave the house without sumatriptan and am always relieved and grateful when the medication works. And it still does.
Why I'm commenting here:
I almost think that we migraine sufferers bear some responsibility for many such statements. No, I'm not the enemy! Please read what I mean before you freak out!
Speaking from my own experience:
Years ago (before I even called it chronic), I decided I wouldn't let migraines control me and my life! I don't talk about them much anymore, I take my pills, and bravely carry on. I'm also lucky enough to have never experienced any accompanying symptoms until recently. My head "only" feels like it's going to explode. I don't vomit, and I rarely have an aura.
What I'm trying to say is: If you constantly downplay your pain and take advantage of the fact that you can't see it from the outside, then it's only logical that people won't be able to grasp its true extent and will come out with stupid comments... Think about it ;-)
Nevertheless, migraine is a terrible illness! It's great that it's now taken so seriously and that many employers are more empathetic than before! For example, my boss asked me to contact the pain clinic because he was worried about me. That's incredibly kind.
What really gets to me is the suffering of those around me. I have an 18-year-old son. It breaks my heart when he pokes his head in the living room door, sees me lying on the couch, and says, "Oh. You have a migraine. I'll come back later." He knows this. He's grown up with it. Mom is unresponsive again. She's irritable again, can't handle loud noises, can't listen to me. How awful is that, seriously?
The same goes for my husband.
As I mentioned earlier, I rarely, if ever, let a migraine keep me from making plans. But because of the excruciating pain, I can't really enjoy them either.
The people around her should really be classified as chronically impaired as well. And the family members have to listen to all the stupid advice and questions! “Has your wife ever tried XXX?” “She’s probably coming from work!” “She’s just not in the mood, that’s typical for women. Then suddenly everyone gets migraines.” It’s a seemingly endless list.
I'm really looking forward to Kiel and I'm confident that I'll have a fresh start in January and a better quality of life <3
I've suffered from sometimes severe migraine attacks since the birth of my second child, so for 16 years now. The first one landed me in the hospital; I had no experience with them and suddenly experienced paralysis and visual disturbances, followed by a panic attack. This happened several more times. It took a while before it was clear that I had migraines. Unfortunately, the attacks were accompanied by such severe tension in my neck that I suffer from tension headaches almost daily. Yoga and relaxation exercises help me keep them somewhat under control, but I've completely forgotten what it feels like to be headache-free. A migraine hits me with full force once or twice a month, lasting exactly three days. During these attacks, I'm completely out of commission. I can't tolerate light, and sounds feel like electric shocks. My ears also feel blocked, and I get a feeling of pressure in my head. I don't drink alcohol, but I'm often called a killjoy and boring for it. The advice is always particularly great, all the things that supposedly help, but I don't want to... blah blah blah. I've tried practically everything imaginable, and in some cases, I have far more expertise than some general practitioners. I have a very understanding husband who's there for me, but sometimes I feel like I'm getting on his nerves with my constant headaches. Nevertheless, I try to enjoy life; I only have one, and my pounding headache is simply part of me.
Migraines are a terrible illness. When I don't have one, I live my life to the fullest, I'm happy, and I soak up all the positivity.
I've lived like this for twenty years. To others, I'm just grumpy, dissatisfied, and can't stand anyone.
You wouldn't wish such dark days on anyone, this incredible pain that sometimes leads to fainting; barely able to speak, barely able to walk.
So I'm seen as either ecstatic or utterly miserable, or even as "manic," meaning bipolar.
Here are some examples from my life:
You have a headache? You have a migraine? Those are sexual climaxes... only in your head.
You should get properly fucked again, then it'll stop! My boyfriend said that when I was 18!
Or—How do you stand your children? It's your own fault if you have four children! Then you get migraines! My sister said that... who doesn't have children!
Or—A teacher said about my daughter! She can go to school with a migraine... I have them too, and it's really no reason to stay home! My
daughter was only nine years old, and that was from a woman who should know about Waldorf education!!
Or—It still happens to me today! But today I have a piece of paper with me with the diagnosis on it! Then they're quiet... always with a reference to the
Schmetz Clinic in Kiel!
My husband, now 71 years old, said the other day: "You have a migraine again? You just don't want to come with me to visit so-and-so!" We've been together for 50 years, and my migraines started when I met him. You should think about that!
A teacher once told me, "Migraines are just an excuse; you really don't want to go to school!" I also have migraines and can work with them. I was 15 at the time and stressed about my final exams. Because of the illness, I had to leave school and then took my exams a year later!
Of course, I wish this teacher all the best, but…
I still can't stop thinking about the "doctor" who, while I was being monitored in the hospital for my nocturnal increase in intracranial pressure—that is, while it was being confirmed what I'd been saying all along, for YEARS—wrote me a letter about how psychosomatic my pain was. Someone like that works in a university hospital, and in neurology no less! Unfortunately, I can't write here what I'd love to tell that colleague.
I know those sayings all too well. I was even recommended homeopathic remedies. If I want to suck on sugar, I'll just grab the sugar packet in my kitchen cupboard or eat a lollipop.
Right now, I'm having a field day with my landlords, who refuse to turn on the heating. Working all day in 16-degree weather isn't exactly fun. I'm self-employed, and the office is freezing. There's a meeting tomorrow, and if nothing changes, I'll reduce the rent. And these aren't even migraine sufferers. They don't care that cold temperatures can trigger migraines. It can't be that bad, they say. Just a headache, right? A quick paracetamol and back to work.
Hello fellow migraine sufferers,
I recently read the following: The WHO classifies migraine as the disease that most severely impacts quality of life!
This got me thinking, and I realized a few things about myself and my migraines. It's not just the days with pain that drain my energy, but also the daily avoidance of triggers and all the accompanying symptoms of migraines. For example, I don't go outside on sunny days because sunlight is one of my strongest migraine triggers. I also haven't had a drop of alcohol in 15 years and go to bed early every night, which isn't a big problem for me, but I always have to put up with stupid comments and be called a killjoy. Physical exertion also triggers my migraines, which is why sports, gardening, visits to the playground, and sometimes even a short walk aren't possible (especially not in sunshine). That's why I'm adding another comment here that I can't stand to hear anymore: "It's always so dark at your place, it's depressing. Why don't you open the blinds?" Yes, I live in a permanently darkened house because it's too bright for me, even on cloudy days. I never go out without sunglasses, which leads to another comment I never want to hear again: "Isn't it kind of cool to wear sunglasses even in the rain?" Or, equally irritating: "Take off your sunglasses when we're talking. That's so rude!"
And if I ever mention to someone how hard it is being a mother of three with migraines, I also have to listen to: "Well, you brought this on yourself. You really wanted three children." (I never want to hear that one again!) Right, I did want them, and I'm incredibly glad I didn't let my migraines deny me this heartfelt wish. Because of them, I've already had to give up so much in life: no vacation/no school trip without a migraine, no birthday without a migraine, no summer without loneliness (because everyone else was at the outdoor pool while I lay in a dark room), giving up my dream job, giving up my wedding celebration… I could think of so much more.
I think we people with migraines are incredibly strong! We should fight harder for the recognition of our condition (which we can't help, which we don't imagine, and which actually severely limits our quality of life) by not hiding or keeping quiet about it. I also wish that migraines would be recognized as a disability so that things would be easier for us in our professional lives and even at school. (Unfortunately, I passed my migraines on to my oldest child. My son barely makes it through a school week without a migraine attack, yet he has to perform at the same level as healthy students. I can see how he's losing more and more of his zest for life under the strain. He's even had to give up sports because they give him a migraine every time.)
My dears, hang in there and remember: migraine sufferers are exceptionally intelligent and empathetic! The world needs us!
Best regards,
Nadine
"Ginger Rogers could dance just as well as Fred Astaire, but she did it backwards and in high heels." (I read that somewhere recently; I think it describes the life of a migraine sufferer very well.)
I know these "tips" all too well. I've had chronic migraines and chronic tension headaches since early childhood, for 29 years now. Since my migraines are hereditary, I'm at least "lucky" that most of my family is understanding, as some of them are affected themselves or have family members who are.
Things are completely different at work. I've already completed a four-week pain management program and have a disability rating, as well as various medical and occupational health certificates, but none of it makes a difference. As soon as I mention my migraines or my disability rating at work, I'm looked at as if I'm "not quite normal" and just ridiculed. Furthermore, despite the disability rating, no consideration is given to redistributing tasks; quite the opposite, in fact. And then they say, "If it becomes too much for you, say so in time, not when it's too late." I had hoped the disability rating would make things easier at work. In the end, I could have saved myself the trouble of applying. I don't know what else I can do to be taken seriously…
A neurologist I saw when I was 18 had the misfortune of telling me, "Do you even realize that every neurologist suffers from migraines (him included), and the way I described it, it was much worse for him than for me, so I shouldn't make such a fuss?"
The third (and last) neurologist, when I told him I had daily headaches, replied, "That can't be, I've never heard of such a thing, you're imagining it." Since daily headaches/migraine attacks aren't bad enough, naturally, as a migraine patient, you tend to imagine things like that…
I'm very glad about these posts, as it at least lets me know that there are doctors and other people who take the illness seriously.
Thank you for that!
Hello fellow sufferers!
I'm 17 now and have had migraines since I was 4, probably due to misaligned and overlapping skull plates at birth. My mother's "healer" didn't diagnose this, despite months of me crying as an infant, until they finally realized something MIGHT be wrong. In the past 13 years, which actually isn't that long compared to some others here, I've had to listen to almost every single one of the comments you've heard. My favorite is still: "Yeah, right, migraine! Don't be such a baby, I had a migraine once, I took an ibuprofen and then it was fine!" My teacher didn't quite grasp that migraines aren't just a slightly stronger headache. In fact, my migraine attacks have changed significantly. Initially, it started with severe attacks lasting two to three days, which became so intense around the age of ten that I would sometimes simply faint. Fortunately, a really severe attack now only lasts a maximum of one to two days and occurs only about four times a month. The smaller attacks are problematic and truly debilitating for me, as I can have them several times a day, though they only last a few minutes. Since I have migraines with aura, which almost always precedes the attack with complete blindness lasting about one to two hours, I sometimes really struggle with them in my daily life.
Unfortunately, I also have no access to medication or further diagnosis and/or treatment, as both my parents work in healthcare (an operating room nurse and a registered nurse) and don't think it's necessary to give their 17-year-old son, who's having cramps and vomiting, more than one 400mg ibuprofen tablet, saying things like, "Yeah, you can take another one later if it gets worse," or "Don't be such a baby, that should be enough, it always works for us/the patients." Regarding the vision loss, they just said, "Yeah, we could do an MRI and a brainwave test." The result was that there was no tumor or anything like that, so it can't be harmful, right? Thanks a lot. Migraines are unfortunately often not seen as a truly serious illness that has a significant impact on us sufferers in our daily lives. I hope this view changes soon, but I don't really believe it will.
After discovering indomethacin (neurologist: "Try this, one at night," but according to information online, this kind of pain has to occur about three times a day and continuously; the pain returns with every break), I was pleased with the success, but I haven't made much progress so far. An examination, including pressure measurements over several days, shortly before at a university hospital, revealed that the temporarily elevated cerebrospinal fluid pressure contributes to the pain, meaning I can now make sense of it.
But unfortunately, around the same time as this report from the same hospital, I received a rather unpleasant letter from a junior doctor who—this must have been his own initiative—once again labeled me a malingerer and dismissed the pain as "psychosomatic."
The examinations there confirmed this beyond any doubt, and the aforementioned report feels like a slap in the face.
Previous measurements elsewhere showed similarly elevated values, without me receiving any relevant feedback, except for changed values in the reports – I was told something different, or the puncture was performed twice in succession and the second value noted – or a verbal “that can’t be right”; and reports were not created or not completed.
I've had this problem for so many years, and they say that so-called trigeminal autonomic cephalalgias are "easy to diagnose."
(Just so you know, I'm talking about years of severe, migraine-like pain.)
Until then, it felt like I'd tried tons of beta-blockers, topiramate, Botox (which is unsuitable for me because of facial paralysis), ibuprofen (if that worked for migraines, it would be common knowledge), amitriptyline (of course, the chocolate was on the house), and then back to beta-blockers... beta-blockers, beta-blockers, and more beta-blockers, and occasionally acetaminophen antagonists.
Before I got triptans, I had to try codeine with paracetamol for six months. Only then did I get this medication that at least helped me temporarily. But even with triptans, you can't avoid the exhaustion that sets in after each attack, which gets stronger and lasts longer the longer you have them.
The best statement I've heard so far from a gynecologist was "...you have to be able to put up with a few headaches".
That can certainly make you think.
I once had a friend who had that. You'd have to be pretty blind not to realize what agony it is. She vomited and curled up into a ball. The only thing that hurt me was that I couldn't help her.
Standard sentences:
1. You definitely haven't drunk enough. Drink something!
2. No wonder with this air, open a window!
3. I read that chocolate etc. is to blame. Try cutting out certain foods.
4. It's definitely the weather.
5. It's definitely the moon
. 6. I have a headache today too.
7. Go see a doctor.
8. You need to change your life.
Like so many others, I read the article with mixed feelings. I've suffered from migraines since I was around 14 (diagnosed at 16). Currently, I have 7-8 attacks lasting at least 24 hours per month, and the preventative medications I've tried so far aren't working. The injections start in July, and I'm hoping they'll help. I work in healthcare, and a lot of people say, "Yeah, I know what you mean..." But as soon as I'm absent, the comments start – now my boss has cut my hours. "This isn't about you personally, but it's too much for the team if you're constantly calling in sick..." Colleagues say things like, "Well, why don't you do some exercise?" "It can't be that often," and "Yeah, you just have to avoid your triggers." Thanks a lot! Two of my many triggers are flickering/strenuous lighting and changes in air pressure. Someone needs to explain to me how I'm supposed to avoid those! :D
These days, I sometimes even go to work during attacks because we have to call in sick at least five hours before our shift starts. Then I have to vomit regularly at work and take triptans, daily doses of ibuprofen and paracetamol, and travel sickness tablets. Well, you get the feeling that this is how it's supposed to be.
I feel like all I do is sleep and work. Luckily, my partner takes over the housework and our dog. who is also very understanding.
The next step will probably be to apply for disability benefits and try out the injections.
This migraine journey is truly exhausting, and I wish everyone affected all the strength in the world, and those not affected the ability to simply keep quiet when their comments hurt more than they help
A colleague (male) once said to me (female): “You surely know that more sex is supposed to help. You've definitely heard that before, haven't you?”
Fortunately, that was an isolated incident.
What really gets on my nerves now, though, are the questions from family and friends about whether I'm feeling better. I could explode when I hear that.
Usually, I have an attack on one side for two days, then the next day another attack comes on the other side, which also lasts two days. Afterwards, I'm completely exhausted for another two days.
When an attack phase has just ended, I wouldn't say my migraines are any better, because I know the next attack could come tomorrow.
For me, "better" would mean having fewer attacks. But nobody wants to understand that, even though I've explained it many times. Then I have to listen to: "Yes, but it's gone right now!" Yeah, great, and then I'm supposed to be in a good mood and function perfectly. Nobody wants to understand that chronic exhaustion and feeling overwhelmed are increasingly setting in simply from "normal" everyday life, and that you just can't do everything that everyone else does.
I would say that the lack of understanding from those around you makes the illness worse, because it creates conflicts in your life that are also stressful.
I've had migraines since my daughter was born (she's 31 now). Since I worked from home for 25 years, I didn't have any problems with my employer.
It was awful for me... I had an attack, was in bed, and barely managed to call work to report sick. The immediate response was, "Call back when you're feeling better and bring the sick note tomorrow." I was in bed for three days. Luckily, the doctor gave me a sick note for the whole week, as I actually dragged myself to the office on the second day, crying.
Unfortunately, most people just say, "Do something about it." I've already tried everything mentioned, without success.
I'm so glad that my family and my husband take me 100% seriously. My neurologist is also fantastic.
Ah yes, and the daily grind is back... that's what I "affectionately" call my migraine pain, which has been with me for 17 years... well, this article made me chuckle a bit, even though it's really no laughing matter... ironically, in 2017, my "sledgehammer" presented itself as a little lifesaver: three brain aneurysms, two on the left and right sides of my temples, the third located in the middle of my brainstem... not something a 25-year-old full-blooded nurse and mom needs... the same goes for the daily hammering in my head... as a teenager, it was crooked wisdom teeth, then being overweight, and then by chance, because after a strenuous night shift, I collapsed with an extreme aura before going to sleep... I think every owner of a "sledgehammer" empathizes with their equally afflicted counterpart... which makes it all the more sad that I stumbled across this article and that this real disability is still alive. It's not taken seriously enough, or rather, the discussion is too quiet... all the more reason to thank you for the great article :)
But I'd like to give you one more "great tip": the next time you hear someone being a know-it-all, take your imaginary sledgehammer and give them a good whack... that'll definitely be more effective than pointless banter 😂😘😘
Thank you so much for finally putting it so succinctly! As if suffering from migraines wasn't stressful enough. I've been tormented by them for 28 years now and feel like I've heard every comment imaginable. We're all familiar with the endless running from doctor to doctor. For me, the final straw was when my brother-in-law's girlfriend advised me to finally see a REAL doctor…
Unfortunately, I'm now also experiencing the fact that my daughter apparently suffers from migraines as well. She's 21 now, which is the same age I started getting them. It's so awful to see her suffering and to know exactly what she's going through. I feel so guilty that I passed this crap on to her :-(
I wish all those affected all the best and many pain-free days!
I know that feeling all too well…
discrimination is always awful.
My partner had to witness several severe migraine attacks before he could even begin to understand how bad it really is. Since my mother also suffers from migraines from time to time, I can always count on my parents' support. If I call them in the middle of the night because I think I simply can't bear the pain anymore, or I'm scared because I've been vomiting for hours, alternating between chills and hot flashes, and I'm worried something might happen, they immediately call me over and "monitor" me. Some of my colleagues understand me, but unfortunately, my boss doesn't, as she can't empathize with my situation. She only ever gets sick on vacation, never has migraines, and even comes to work when she's ill. Well, I do that too, meaning I go to work sick, but with migraines, it's simply impossible.
I hope things improve for all of you in the future. My migraines used to be more frequent (14-24 times a year), but now, thankfully, they only occur 5-8 times a year for a maximum of 24 hours.
A pharmacist recommended Schüssler salts to me. She said they would definitely help. I told her—because this information disappointed me so much, felt really nasty—that I'm usually allergic to Schüssler salts. She then gave me an offended and angry look. Oh well, that's life… I felt good about it, though, because I was able to fire back with a snarky remark.
I started getting migraines when I was 13. I missed a lot of school. I was subjected to stupid comments and bullying. When I had a migraine during a school trip, it got a little better, but I was still accused of a lot. Now I'm 19 and suffer from chronic migraines. That means I only get six pain-free days a month. I know all the well-meaning tips and advice. I've tried everything, and nothing helps. It's well-intentioned, but I'm so tired of hearing it. "Oh, you're way too thin! No wonder... put some weight on and you'll feel better." What a load of rubbish!
I've tried everything for prevention. I've been to migraine clinics (which I can still highly recommend! Sharing experiences is really helpful!).
Now I've had Botox for the first time... unfortunately, I haven't noticed anything yet, but you can only really judge after the second treatment. After that, the injections are my only option.
I'm really scared that they might not help either. I can't plan for the future, I can't do an apprenticeship. Who would hire a trainee who's only there once a week at most?! Nobody!
So, we migraine sufferers can gladly do without all the stupid, well-meaning, or know-it-all advice and wisdom!
Thanks for your website…let's just hope that non-migraine sufferers read it too!
I haven't experienced workplace bullying so far, as some of my colleagues were also affected. However, misunderstandings and stupid gossip about my illness from those not affected do occur from time to time, so I no longer mention why I'm calling in sick. If I am asked, it's usually just my stomach or something similar.
My older brother often says to me during my attacks, "It can't be that bad, everyone gets headaches sometimes." Then I tell him that it's not JUST a headache, and he replies, "What's so different about it? You'll survive." I suffer from chronic migraines, so I often say, "Mom, I have a migraine, I need to go to bed," or something like that, and then I always hear from my brother, "Again? You can't have them that often, I can't hear that anymore, it's getting annoying." That often hurts me because he's never even had a real headache in his life. If only he knew what a migraine is like..
@Kathrin Witt
I'm so sorry to hear that. Please talk to them about it and don't do so much when you're not feeling well; they'll learn to appreciate that. You're a strong woman. All the best for the future!
I've had migraines for as long as I can remember, since I was about three or four years old. I've often been told I'm faking it, or that I should exercise more, and I've heard all the other comments mentioned above. Unfortunately, I've been obese for a few years now, and I constantly hear, "You need to lose weight, then your migraines will disappear or at least get better." Sometimes, I've even had doctors tell me this. My whole life has been dominated by such statements. I've gotten used to it by now and don't say anything anymore. Luckily, I have a good pain clinic. There, I find the few people who actually take me seriously.
Unfortunately, our society hasn't really grasped what migraines are and how severe they can be. Especially among colleagues, people often make fun of them, saying things like, "He's got another migraine, he probably drank too much over the weekend..." etc.
That's why I'm writing this comment, because I really appreciate someone pointing out what you shouldn't say. My plea to everyone who isn't affected: Spare me any comments or remarks. Just leave people with migraines alone.
Hello to all fellow migraine sufferers!
My husband often says to me, "But surely you can still manage a little housework?!" Over time, you learn to let it show less and less and just keep going. Luckily for me at work, my boss is also a migraine sufferer, and my direct supervisor is usually very understanding.
I've been taking beta-blockers since February, and I'm so happy that instead of one or two attacks a week, I now actually have two or three weeks off. Last time, there were six weeks between doses – it was pure bliss!
Your migraine is definitely due to the climate!
Why do you need migraines if you don't have any sex to avoid anyway?.
Hello, I've had migraines for 15 years. I usually suffer from them twice a month for three days at a time. In addition, migraines also strike occasionally for one or two days at a time. Regarding my illness: I feel really bad, weak, lacking in motivation, and extremely tired. For 15 years, I've forced myself to manage my daily life despite this. Even though the pain makes me feel terrible, I still do my housework, wash the laundry in the basement, go shopping, take care of my animals, and cook meals. I also take my children and the dog out for walks. My constant companion, however, is the migraine.
I work from home, so thankfully I don't have to call in sick.
No one in my family understands my problems. They think I'm making a fuss.
I never receive any support. I'm left standing at the stove, cooking meals.
Sometimes I think how crazy it all is; others who also suffer unbearable pain are forced to sleep in a dark room.
But I'm here and I'm carrying on. Sometimes I think I wouldn't be able to sleep with this unbearable pain. I don't know, I'm always active.
I've given up on taking painkillers because they never had the desired effect.
I've also read that they can make everything worse, which is why I'm staying away from them. I'm enduring the pain until it's over. What
shocked me most was that you can have the pain one day and wake up the next day still with the same pain.
Some days I'm very desperate; there's no one who understands me. Sometimes I'm on the sofa in front of the TV in the early evening, so exhausted that I almost doze off. Then I get asked why I'm going to bed so early. And I feel like I'm single. Unfortunately, I'd like to be, but all I can do is lie there. I'm just completely worn out 😩
I don't know what to do anymore... During those hours, I feel so helpless and alone
. Nobody understands me... And then I think, if only these stupid aches and pains would go away, then everything would be alright. But they're there, and nothing is alright. I
guess I'll just have to live with it
I've often had to endure accusations of malingering: "You're faking like a girl, you could come up with something new to get out of work," "Get out of here, not in your head, you'll never get anywhere like this," "Hey girl, what'll the weather be like tomorrow? Don't forget you're middle class," "Leave the storm at home, you don't need that at work." No matter where I've worked, whether in construction, therapy, hospitals, or nursing, the bullying starts after three or four absences.
How often have I had to listen to friends and acquaintances telling me I'm a lazy malingerer because I constantly lost my job due to my migraines? And how often have I heard that migraines or headaches don't even exist, that it's all in your head, that you should see a psychologist? It's nice when there are people who don't know what headaches or migraine pain are because they've suffered from them, but to accuse those who suffer from them of not having them is the biggest outrage. An acquaintance of mine, who also didn't tell me that it doesn't exist, once witnessed me during a migraine attack, saw me vomiting and lying in bed, and said to me, "You can't possibly be an actor, you're really not well." Unfortunately, there's nothing you can say to that. I think people who have no idea about it should just keep their mouths shut, or before giving advice, they should inform themselves first. An acquaintance who also suffers from migraines today said to me, "You've been enduring such hellish pain for 30 years, and this person can't expect any sympathy from me." How often has this been said? I was humiliated and called a nutcase by this person. Now at least I know I'll be going through this for 30 years. I can only say that these people who have no clue about this should inform themselves before giving advice. It can have no meaning or purpose
I can think of sentence number 12 that you shouldn't say to people with migraines and/or chronic facial pain:
You need to try to cope better with the pain instead of spreading negativity because of it, and
you need to look inward to understand why you have chronic pain. I've noticed that you're "not at peace with yourself," etc. I could mention several other comments that essentially say the same thing. I find such comments a slap in the face because they basically imply that you can willfully control the pain. They put real pressure on you to improve because, in principle, your misguided psyche and outlook on life are causing the pain, and you're supposedly to blame.
Even the psychotherapist I'm seeing says that I shouldn't attach so much importance to the triggering factors because otherwise I'll restrict my life too much, which in turn intensifies the pain symptoms. I agree that this is associated with a certain reduction in quality of life. But if I know that, for example, alcohol, chemical fumes, saunas, and certain foods high in histamine can trigger a migraine, why should I expose myself to them and risk even more migraine attacks, which ultimately unnecessarily increase the frequency of attacks? That worsens my quality of life more than avoiding certain triggers. Every pain therapist recommends avoiding known triggers, but psychiatrists reject this strategy as wrong. I think it's wrong to question the physical causes of pain from the outset and to psychologize them.
Unfortunately, even today, there is still a lack of sensitivity and understanding in dealing with pain patients.
I just discovered this page and must confess that I haven't read all 200+ comments. I've suffered from migraines since the beginning of my period, have been going through menopause for many years now, and am hoping for improvement once it's finally over. Spending half the month just trying to get by and function is a massive reduction in quality of life and a huge strain, because every attack is incredibly draining. Luckily, I work with people who also suffer from migraines, including my supervisor. So it's not quite so bad for me to call in sick when I'm completely incapacitated for three days. For years, I've always kept a good supply of triptans, and not a day goes by that I leave the house without my medication. Last year, I tried various preventative medications. Unfortunately, they all had extreme side effects and, as far as migraines are concerned, were completely ineffective. I had to go through this process to be authorized to have the new, albeit very expensive, medication prescribed. I received my first injection on December 21, 2020. That was two and a half weeks ago. During this time, I had two relatively mild migraine attacks in the first three days after the injection. These lasted no longer than two to three hours. I can't even begin to describe what a significant improvement in my quality of life this is. My thanks go to my neurologist, who supported me through this process. I hope I continue to respond so well to the injection, because it's the first time in my life that I feel good and don't have to constantly worry about whether I can do this or that, always having to expect that a migraine will derail my plans.
I've had migraines since I was 11 (since I started menstruating) and I can't seem to get a proper diagnosis. I go to the doctor with migraines and never get a referral to a specialist. Often, they don't even mention that I have migraines; instead, they advise me to lose weight because I'm so overweight. Even as a child, when I was only slightly overweight. It's exhausting; some doctors are exhausting.
There's generally very little understanding of the illness.
But there are also: "Don't take a pill!" when I say I take triptans. Then I'm labeled a wimp. :( And: "Aren't you afraid you'll become addicted to painkillers?" No, I won't.
I've suffered from migraines for 16 years, since I was four
. I'm currently taking my A-levels for the second time (I had to drop out at 16 because of the migraines), and it's so difficult. Unfortunately, I have a chronic form and experience severe pain with episodes every day. (Severe nausea, difficulty seeing, etc.) Right now, it's almost unbearable again. I constantly feel guilty and try to force myself to do everything, often with violence, but ultimately with unsatisfactory results. Today was another one of those days that makes me completely doubt humanity. I had another terrible attack in class, and my teacher couldn't think of anything better to do than loudly announce to the whole class, "It's unacceptable that you're always feeling so bad. You must be doing something wrong. I'm sure you're watching too much TV, not drinking enough, and not sleeping. This can't go on; you can't do school like this." Thanks for that. I'm doing everything I can to keep my grades in the good to very good range, but it's exhausting me. I want to succeed, but the people around me make it so difficult. You're a lone wolf in everyday life and have to develop a thick skin. That's why I'm so grateful for articles like this and all your comments, to know that, all things considered, I'm not really alone!
It's very revealing to see the sheer volume of comments on this topic. My own experiences fit right in. I also suffer from recurring attacks of severe nausea. If I don't have a triptan on hand in time, it usually results in a day of throbbing, one-sided pain, followed by a day of intense nausea where I vomit about every 30 minutes without being able to eat or drink anything – this goes on all day until it finally stops in the late evening due to sheer exhaustion. Then there's usually another day where I'm just completely wiped out and my brain feels like it's been run over by a steamroller, but the pain subsides, and in the days immediately following an attack, I feel clearer and lighter than ever before. Then, over time, the tension builds up again, and the latent pressure in my head increases until it erupts violently once more. This can be triggered by only minor things, like too much sun, a beer the night before, staying in one position for too long, or stressful social situations—the list is endless.
Although I consciously choose not to work full-time for precisely this reason (four days a week in the office, interrupted by Wednesday as a "rest day," plus a side job outdoors on Saturdays), it still occasionally happens that my migraine strikes on an office day. On these days, I usually just force myself through because I know my next day off (off to be sick without guilt) isn't far off. But my colleagues still sometimes find out, which is why a keen colleague, who is also very interested in alternative medicine, including homeopathy, recently came to me conspiratorially and handed me a stack of text she had copied from her favorite book, "Medical Medium"—it was the chapter on migraines. The author's approach (who, by the way, gets all his information whispered to him by a divine spirit—no joke!): no dairy products, no eggs, no gluten (so no bread, etc.), no meat, no fermented foods, no table salt, no MSG, no alcohol, no chocolate(!). He lists stress, menstruation, sinus problems, intestinal problems, an esoteric virus that only he knows about, and much more as triggers. Since practically EVERYTHING is a cause of migraines, you're supposed to try to avoid EVERYTHING. I'm thinking, sure, if I could sit on an island shielded from all stress, not have to eat anything, and stop menstruating, then I'd probably be fine—thanks a lot. But since the triggers are practically interchangeable, and even if I manage to avoid 90% of them, the remaining 10% will still get me, that can't be the solution. The problem is that there's something inside me that's so easily triggered. For me, the pressure would simply build until the slightest irritation provokes an attack. Anyway, she'll probably come to my desk soon, her eyes shining, and ask, "So?"... and I'm already bracing myself for the next bout of pain when she asks if I'm still eating bread...
I often hear things like, "Don't be such a baby, it can't be that bad," or "You're just faking it." The typical "Just take a pill" is also annoying, especially since triptans usually help, but I get every imaginable side effect listed in the package insert every time. Then you have to choose between migraine pain or no migraine but other extremes! The side effects are debilitating (body aches, even lifting a piece of paper is too heavy, speech difficulties, and even a paralyzed tongue). If any of you in the community have any tips, please let me know! Sending lots of love and strength to everyone affected!
Hello everyone.
I don't know how or where to begin. It took decades until I found a doctor who immediately recognized it was migraine and not just a headache. Thanks to my family doctor, I can now lead a comfortable life again. Even in early childhood (around age 5), I had headaches, stomach aches, nausea, and so on. But it was never diagnosed as migraine. As a person, you slowly learn instinctively to do something to make the pain more bearable. Strangely enough, I discovered that whenever I got a kind of flu or cold, my mom gave me Tussipect with codeine. Oddly enough, my migraines were greatly suppressed by taking this medication. When another attack came along, I secretly drank some. As I've already explained, I was five years old. Today I'm 55 and I say migraines aren't curable,
but you can manage them. I can relate to everyone here regarding migraines with aura, nausea and vomiting, and sensitivity to noise, even to the point of suicidal thoughts.
I was truly on the verge of taking my own life just to finally be pain-free. I'm also familiar with the kind of advice that's given out there.
-Your illness isn't visible, so you're faking it.
-Get something done about your teeth, then you won't have migraines anymore.
-Drink more, exercise, etc. How stupid is that? Every exertion makes migraines worse.
-Smoking promotes migraines, aha, something completely new, because if that were true, I wouldn't encourage it.
What kind of judgment do people have who aren't in my shoes? Migraines aren't fun and have
virtually nothing to do with headaches. Good thing we compared them, huh?
Please bear with me; I had a stroke 12 years ago, so my writing may contain spelling mistakes and gaps.
Anyway, the attacks really started in 2009, and my family doctor accordingly put me on sick leave and wouldn't budge.
I had to go to the Medical Service of the Health Insurance Funds (MDK) several times to have my fitness for work assessed. It was quite disheartening to be asked, "Do you drink and smoke?" I said that alcohol gives me migraines, and his response was, "You smoke, that's what gives you migraines." What nonsense, I thought, because if that were true, I wouldn't want to smoke. Now, when my sick pay ran out, I had to go to a clinic in Bad Zwesten. The result: I wasn't put on sick leave for the migraines, but for complex traumatic stress disorder. I don't know if I should write this, but I'll give you a little glimpse. What had made my migraines bearable all these years was my love for certain, let's say, clothes. Playing with them helped me a lot; it strongly suppressed the migraines. So, in other words, sex can provide relief, at least it did for me, but for others it can
trigger migraines. My medications were ibuprofen, topiramate, and, for emergencies, Allegro after my stay in Bad Zwesten, which isn't a migraine clinic.
Migraine is not recognized, and I don't think it will be in the future either, because it is incurable.
The bottom line is, I wasn't put on full disability leave 10 years ago because of migraines, but because of mental illness.
Unfortunately, some learned gentlemen in white coats are at a loss because they're baffled by migraines. It's just a lot of guesswork,
rather than a doctor having the guts to admit they don't know what to do. On the contrary, they try to blame the patient.
In this clinic, they declared me mentally ill simply because I'd been playing with some clothes in bed. Seriously? It helped
make my migraine bearable. And what did the psychiatrist give me for that? Seroquel. Thanks for that, for providing relief. It's
simply unbelievable to be treated like that. I thought we hadn't stagnated in medicine and that doctors had learned how
to prevent harm.
And today, after that whole ordeal, I only have 2 or 3 attacks a month instead of up to 15 attacks lasting 3 days each.
Ibuflam 600 helps me then, and this fun with the clothes, in other words, sex.
That was a small glimpse into the life of a migraine feigner—a feigner because that's how they're perceived by those who
don't have the condition. Try having a tooth pulled without anesthesia or your hand amputated without anesthesia for three days straight; compared to a migraine, that's a walk in the park. Dear non-migraine sufferers, except for those who understand.
I recently had another migraine attack at work, complete with vomiting, etc. (I work in a doctor's office). When I asked to go home because it's incredibly exhausting having to run to the toilet every five minutes,
my boss replied sarcastically, "Yeah, sure, and I'm going home because of my back pain." And to hear something like that from a "doctor"? What a shame.
Hi,
I also want to talk about my headaches. It started with earaches, then at some point I had severe headaches. It all started last school year. Everyone just said it was psychological. If it were psychological, I wouldn't still have them because I'm in a better class now and have a better teacher. I still get earaches on and off. My brother had similar symptoms to me; he only has back pain now, and I'm still plagued by these stupid headaches. Someone even said it might be migraines, but I think it's something else. The doctors also looked at my ears but didn't see anything. I was prescribed medication, but it didn't help. Painkillers didn't help at all, only for a very, very, very short time. I can't concentrate at all in school. Especially if I touch one ear, it hurts terribly, and the headaches get worse. My father works in the medical field and has looked at me a lot. But I finally want to know what's really wrong with me. During the holidays, I had two really severe headaches that were almost unbearable. Many people say it's triggered by the current situation, but that wouldn't explain the earaches, maybe the headaches. I've almost got the earaches back, man, I've got such a bad pain in my right ear right now, it's still there but less than before. Anyway, back to what I was going to write: I've had the earaches for about nine months now and the headaches for about six months. The pain just comes out of nowhere, it's just there at some point. That's what bothers me the most, that I don't know why I have the pain. I'll stop writing now before I get such severe pain again. Wait, I forgot to mention something: I also have light sensitivity when I have headaches, or even just at other times. I hope that it will finally be thoroughly investigated and not just have them look in my ear and say they can't see anything or blame it all on my mental state. I'm the only one who's had such severe headaches; my father had migraines as a child. But in his case it was more psychological, but I don't think that's the case for me. I hope we finally go to a doctor and he finally figures out why I really have these headaches.
Best wishes and stay healthy,
Bey
The best comment I've ever had the pleasure of hearing was… “You have a migraine, but I have a headache, which is much worse because a migraine only hurts in one spot, a headache hurts your whole head”… what more can you say?
Hi, I had a migraine once, and when it started, I was on the phone with a friend. I told her I was having an aura and would let her know when I felt better. The next day, I was feeling better by evening. I checked my phone again and saw that 10 minutes after I hung up, she had asked if I could send her something. An hour later, she asked again if I could send it (I was still completely exhausted in bed at that point). I replied that I could send it, but also asked why she was asking again if she knew I had a migraine. Her answer: "As if you couldn't get to your phone until now! If I have a headache, I send you something like that right away." She still doesn't understand. ::(
Today I also want to write about my migraines. I had just been discharged from the pain clinic again and met my sister the next day.
She said to me, "I had no idea you were in pain!" I was already 59 years old at the time! I've had tension headaches since I was 16 and severe migraines since I was about 23! Back
then, I was called a whiner or told, "Don't be such a baby." (my sister) But even today, my husband replies, "I know what you mean, my back hurts too, and that pain is definitely much worse than a minor headache!" We've been together for 62 years!
I've had chronic migraines for years, 15 to more like 25 attacks a month. Luckily, after a Botox treatment, which didn't reduce the frequency of attacks but did lessen their intensity somewhat, I respond very well to triptans again. And I take them when I get an attack, especially at night, so I can show up at work smiling in the morning. I really enjoy my job, even though it's stressful, and, to be honest, I'm terrified of having a bad attack. I've been through quite a few, and I'm not keen on a repeat. And I know all the comments, even from doctors – "You know you're dependent on medication, you should only take 10 triptans a month, that's medication-induced headache..." – Yes, I know that taking so many triptans isn't ideal, and I'm always grateful for the rare, multi-day pain-free periods – then I don't even think about taking a pill. I've already been through the "well-meaning advice," for example, from my boss: "Have you ever thought about working reduced hours…?" – a joke in my line of work, since I'd just get paid less, not have less work. Many people certainly mean well with their advice, but I also realize that some don't take my pain seriously, because I do go to work and do what I can. And if something hits me during the day, I immediately take my painkiller and hope that the pain remains bearable and passes quickly so I can continue with my daily routine.
I really hope that the treatment in Kiel helps me, because I'm slowly running out of options – not a pleasant thought.
My teacher (10th grade) always said to me,
"You say you have migraines, but you don't look sick at all." I cried more than once because of that, omg.
My brother said to me this morning, "Serves you right," and grinned. (I'm 37, he's almost 41!)
Dear Marianne,
of course we, as those affected, are also aware of the motives of those who supposedly want to help, albeit in different forms.
The point is simply that this is not about understanding those who are not affected.
So maybe find a community where people are dealing with similar problems to yours.
Perhaps you'll find some help there :-)
Hello everyone
I'm writing this from the perspective of someone who isn't directly affected. My husband often suffers from severe headaches, and I hate seeing anyone in pain. So I'm probably one of those people who wants to help over the top. I sometimes ask things like, "Have you drunk enough today?" or "Have you eaten a proper meal yet?" I'll even make him something to eat or some tea if needed. I've also bought him a book with exercises for relaxation, precisely because I know he's often tense. There's no "lecturing" or malicious intent behind it. I simply want to help him in those moments. I want to do everything I can to make sure he's not in pain so often.
After reading your comments, I realize that these kinds of questions can be annoying for someone affected, because it sounds like you get asked them very often. However, I believe many people are trying to get to the bottom of the cause for or with you, in order to help you. I think most of them aren't aware that you don't need or want this, or that it might even annoy you. Of course, inappropriate comments and silly lectures are excluded from this!
Best regards
For me, there's no pain worse than a headache. In fact, there are very few days in my life when I don't have a headache. For me, it's really just a matter of intensity.
Currently, I've been suffering for over two months with severe headaches, migraines, and nausea. I get a break of one to three days at a time, and then it all starts again. On weekends, when things are quiet, it slowly gets better and better, but by Tuesday at the latest, it's pure hell again. This throbbing and stabbing in my head is simply awful. If it were just "normal" headaches, but no. The heat (temperatures above 25 degrees Celsius), bright light, smells, or physical exertion (e.g., climbing stairs, bending over, carrying things) only make the symptoms much worse. How am I supposed to work properly under these conditions? Concentration is impossible. During my current attack, I've noticed that I keep dropping things. When I close my eyes, I get dizzy and start to sway.
In those moments, all I want to do is go to bed and breathe in the cold air. I usually turn on the fan and put wet cloths on my forehead and neck – or sit under a cold shower for several hours a day.
It's fine while I'm showering – but about 45 minutes later the problem starts all over again.
It's nice to hear comments from superiors like, "You should think about whether the job is right for you," and "You should ask your doctor if you're even fit to work." Or, "If you don't feel like working, you should just stay home!"
My new (former) employer took the easy way out and simply fired me while I was on sick leave during my probationary period. When
I called to ask why, he admitted that I wasn't at work and was only on sick leave for 1.5 weeks. He doesn't need malingerers in the company.
I'm not a spiteful person, but I wish someone like that would experience a single, really bad migraine attack so they can feel for themselves what hell goes on in their head.
I suspect that all the artificially provoked stress and time pressure from my supervisor is the trigger for my current migraine. Before this whole mess started, I was able to do my job quite well.
I've often noticed in the past that after a lot of stress, anger, and time pressure, the attacks are more frequent than during calmer periods. This isn't just related to work, but also to my private life. When things get too hectic and stressful, the headaches start slowly and gradually intensify. Often, it's simply because there are too many people around me. I get migraine attacks more often when I have to travel by train than when I'm driving.
Now I have to worry about whether I'll be allowed to go on our three-week annual vacation in a month. There will certainly be discussions with the health insurance company :(((
I've had to listen to all sorts of things over the last 35 years. Almost everything listed by the previous posters sounds very familiar.
Medical examiners from the Medical Service of the Health Insurance Funds (MdK) are always very "understanding" and just casually declare you fit for work.
The last MdK doctor even gave me the helpful tip during the examination to please sit down. If I were to fall over, he'd have a problem... because my examination had already started and finished without me, and all the reports were already written and ready to be sent. My personal appearance only took place because I "was supposed to be examined." What more can you say or think about that??? Luckily, my family doctor wasn't misled by such a quack and continued his treatments.
Changing your diet… for food allergies, ulcerative colitis, and chronic diverticulitis is also a very well-intentioned piece of advice that just makes me shake my head and walk away without a word.
Or go get some fresh air and do more exercise… when you have allergies from the end of February to the end of October.
And then it's always the same: for every "solution," you just have excuses.
Go see a psychiatrist, you're not all there, you're a malingerer!
At some point, I gave up listening to such things or giving them any thought. All I ever say now is that they should be happy that they are sooooooo healthy.
What medication do you take when you get headaches or migraines?
I get my medication two or three times a year in the Netherlands because it's much cheaper there in bulk, and then I mix it myself. I've had pretty good experiences with it.
I either take up to 1500mg of aspirin, 1500mg of paracetamol, and 150mg of caffeine daily,
or up to 2400mg of ibuprofen and 600mg of caffeine daily.
From the age of 17, I also took tramadol for almost 20 years, but that can't be the solution either.
The problem arises when you completely abstain from caffeine from one day to the next. The following day will be pure hell!
For this reason, after the pain medication, I only take pure caffeine tablets and reduce the dose daily down to 0mg.
When I don't have to work, I try to manage without medication as much as possible.
What sometimes helps is putting a lot of peppermint oil on my head while showering (with quite hot water). I don't know if it's just my imagination, but sometimes it helps, especially on hot days. Afterwards, I feel cold and better. I also use ice packs on my neck and forehead and get plenty of rest.
Maybe this will help someone else too!
Peppermint oil isn't that expensive, and almost everyone has a shower. It also works with a whole bottle of peppermint oil in a hot bath. I got that tip back when I was in the army hospital, and my peppermint oil consumption went up quite a bit after that ;-)
I have a disability rating of 40. However, "cervical migraine" only accounts for 10 points. I find this incomprehensible.
Due to my many different illnesses, I'm on sick leave for at least two to three months a year.
The worst was in 2013, when I was on sick leave for over two years straight, which ultimately led to rehabilitation and disability.
My application for an increased rating at the social welfare office was rejected!
My appeal was also rejected!
What do I need to do to get more disability rating points for migraine that truly reflect the limitations it imposes on my daily life?
I wish all migraine sufferers as many pain-free moments as possible!!!
A comment from colleagues after I was in the hospital on an IV drip because I couldn't stand the pain anymore: "It's surely your own responsibility to drink enough in weather like this."
Hello, I've had aura migraines since I was 5 years old. I didn't know it was migraine until I was 14. (No pediatrician, a stay in the anthroposophical ward at the Herdecke Clinic, an EEG, etc., led to the diagnosis.) It was always just called "visual disturbances." In my younger years, this was accompanied by numbness throughout my body and vomiting. A friend casually remarked, "Oh, I have that too, it's migraine." I'm lucky because I don't get the severe headaches, just a slight throbbing pain on the other side where the aura was. I can't identify any triggers, except that as a child, if I was particularly excited about something, like a trip, I would usually have several attacks that day, and that would ruin the trip
I just had an aura attack and can now type again – I can easily hide the 25-minute duration from my colleagues. As a graphic designer, the attack is, of course, very limiting.
Since I've gotten older, I usually also experience speech difficulties and mild confusion, which worries me – especially when you read that migraine sufferers are more prone to strokes. (I'm 49 now). I've never had to take medication for it and am therefore grateful to only have aura attacks.
I don't keep a migraine diary because I can usually see the very subtle warning signs – a tingling in my fingertip or tongue, etc. – and sometimes they're particularly vivid, only recognizing them when the attack actually starts (every 3-4 months). I once had an extreme series of attacks when I took probiotics, which were apparently complete nonsense. After stopping them, I had nothing for a long time. When I started doing sports again (aerobics), it started immediately after training, which I attribute to electrolyte loss (I took magnesium).
And of course, I'm familiar with that from people around me when I talk about migraines. What's wrong with them – lifestyle changes, detoxing, weather changes – blah blah blah. I'm glad that migraines are finally being discussed as a neurological condition.
To all those affected – all the best to you and hopefully more pain-free time
PS: Book recommendation: Novels by Oliver Sacks
Hello to all migraine sufferers.
I've spent several hours reading posts about how people like us are coping, more or less, and what we've all experienced.
I'm 59, male, so in the minority, and I've also suffered from one or more forms of migraine for over 33 years; I can't remember exactly how long.
The last few years with my family doctor, before the migraine was diagnosed, were the worst, in my opinion. I always got along well with my doctor, even now in his well-deserved retirement; we were on a first-name basis. I told him back then, "Do what you want with me, I can't take it anymore, I don't want to live like this anymore." He said to me very thoughtfully and with concern, "I'll think of something. Come back for another appointment next week or the week after." So I did
. My doctor recommended that I see a pain therapist. I got the name, address, and phone number and made an appointment.
I saw a small group practice, many new faces, and a lot of new misery. The staff was friendly, and the doctor was very approachable. As usual, I had to fill out a questionnaire and describe my medical history. Then came many examinations that were unfamiliar to me. Several appointments and new medications followed, along with the first attempts at preventative measures and my first "Kiel headache diary." After further appointments and initial attempts to get to the bottom of the problem, there was no improvement, which I also told the pain therapist. He then suggested I try a different medication if needed (Maxalt Lingua), my first triptan, the kind everyone has probably been prescribed at some point.
When the next attack started, I took Ritazatriptan for the first time. After 20 minutes, my head was calm again; I couldn't believe it. At my next appointment, I proudly confessed how well the medication had worked, and the doctor immediately told me it was a migraine. And so the circle was complete. My mother has had these similar headaches since I was born, which noticeably lessened with menopause. She was never diagnosed with migraines.
Over the years, the medication became less effective, so I consulted a neurologist to try new approaches, which unfortunately weren't entirely successful. I searched extensively online for information on migraines, reading and researching.
After years, I stumbled upon a new term: "Botox."
By then, the attacks were so frequent that the prescribed medication was no longer sufficient, and I started obtaining additional medication.
I finally got an address at the Charité hospital in Berlin and, after much back and forth, managed to secure an appointment because getting a referral wasn't easy, as only following the established procedure led to success.
I had an appointment and a referral, so it was back to square one: questionnaires, old medical reports and findings, etc. Then another appointment at the Charité in Berlin, over 130 km away. My hopes for quick help and relief were quickly dashed. After several appointments, the doctor prepared and administered the first treatment with botulinum toxin. As mentioned earlier, the injections were given in the same spots, causing very unpleasant pain under the very thin skin at my hairline and down to my shoulders.
It brought no relief for about three months afterward. I was then referred to another neurologist, who was present at my next appointment and took over my treatment.
There, I learned a lot about medication overuse. I had been diligently keeping my headache diary, and it was explained to me that I had been taking too many triptans per month to combat the numerous attacks. I was told to wean myself off all painkillers for a while.
This was the worst time I have ever had to endure. The time was extended with each appointment, with the hope that it would be over by the next one. In the end, it amounted to three-quarters of a year. When I presented this message to my family doctor and my neurologist, they immediately and spontaneously agreed that if there were days when I was more able to work, I only needed to call and they would send me a sick note, which I had to take advantage of despite having regular appointments.
Sometimes I felt so awful; I sometimes stayed in bed for two days straight, in complete rest and darkness. I also informed my employer about the very difficult ordeal of going cold turkey, and this was accepted.
Before and after the withdrawal, I tried various medications for prophylaxis, which brought temporary success, but nothing lasts forever. Then came the second attempt with Botox, which brought moderate success over a period of more than a year. I was told it would be a success if I had one-third fewer attacks or days with headaches. This also led to another change of doctor in the same town.
I rarely experience nausea or vomiting, but more often I have light and noise sensitivity. When I have a cold, the headaches are unbearable; nothing helps, which is why I deliberately use the term "headache" in this context. Then the tinnitus, which I've had for at least as long as the migraines, becomes unbearably loud!
I try not to use triptans more than the aforementioned 10 to a maximum of 15 times a month because I know exactly what could happen again.
I'm also on the list of candidates who would be eligible for the new "CGRP antagonist." It
's not my turn yet, so I'll continue as before with antidepressants for prevention and triptans.
To everyone going through something similar:
Hang in there.
We don't need well-meaning advice, we know what we're doing!
Regards, Jörg
Reading this makes me think I was incredibly lucky with my doctors.
My family doctor – sadly, he has since passed away – made a clear diagnosis after the first three attacks and immediately referred me to a neurologist who specializes in migraines. I was 12 or 13, I can't remember exactly.
I always felt well cared for by my doctors, and the medication (Maxalt and a beta-blocker for prevention) worked wonders. Thanks to the beta-blocker, I only had about 1-2 relapses a month for 5 years, instead of 2-3 a week.
Unfortunately, when I was 19, migraines turned out to be a particularly nasty curse. After 14 days of continuous severe headaches and more than two months of nausea and vomiting, I ended up in the hospital. The immediate response upon mentioning my known migraine condition was that it was indeed a migraine and they simply needed to break the cycle of pain. This was then attempted as an inpatient. And because I "only" had migraines, the mandatory tests (EEG, MRI) were repeatedly postponed. Finally, after several days, they performed the MRI and then informed me that I had had a stroke – a misdiagnosis. It was a cerebral venous thrombosis. Not much better.
Since then, I only trust my long-established doctors and am always very skeptical, especially in hospitals. Unfortunately, I've also developed chronic headaches and, on top of that, regular migraines.
I have a lot of support from my family and friends (there are always a few exceptions, unfortunately) and I am grateful for the support I receive.
I wish you all the best and much strength and perseverance
Barbara Scott-Hayward December 26, 2018 at 5:25 a.m
After a largely sleepless night, I found myself at the computer – because of the migraine. Sometimes reading something boring helps. I'm a social worker by profession. One of my superiors said to me, "Yeah, yeah, the meticulous ones, the obsessive-compulsive ones with their migraine attacks."
I couldn't reply to that.
My story is this: as the daughter of a mother who suffered from severe migraines, I saw as a child what I would go through. And yes – my period started at 12.5 years old, and hurray – the migraines came right along with it! I more or less went through a similar ordeal with an understanding
neurologist who performed countless EEGs on me. What happened to me two years ago was the absolute worst:
one Sunday afternoon, I fell out of bed and had two epileptic seizures. In the hospital,
I then experienced another three-minute seizure – I was terrified. When I slowly regained my ability to think clearly, I had bed rails on my bed!!! and wasn't allowed to go to the toilet or shower alone anymore—the illness is too dangerous!!!! My own experience was completely different: I had the distinct feeling that "toxins or impurities" had been removed from my mind. My memory—which had been declining since I turned 40—returned with its former clarity.
However, I still suffer from migraines and experience them about six days a month. Like all of you, I then need absolute quiet, no smells whatsoever, and preferably a lukewarm bath—several times a day.
I take antispasmodic suppositories, which are easier on my stomach.
Unfortunately, like so many of you, I've heard mindless comments and idiotic advice from numerous doctors. The better you know your body, the better you can help it!
All the best to everyone affected – don't let stupid comments get you down!
Hello, thankfully I'm relatively rarely afflicted by this scourge of humanity, but when I am, it's so severe that I usually need a whole week to recover.
Migraines can be triggered, exacerbated, and aggravated by so many factors that I'm sometimes quite relieved when someone comes up with a new suggestion. I've found that hearing about miracle healers and miracle cures is an attempt to show empathy. It's important to "describe" the indescribable pain to those around you, to share scientific findings, and to substantiate the statement "I have migraines." The white and gray matter is so complex that neither sufferers nor researchers should be able to simply summarize it in a single word.
Hello everyone,
I've been suffering from migraines for about 20 years. At first, they weren't so frequent, but for the last 10 years or so, I've had about 15-20 attacks a month. I'm also still working. I've tried almost everything: five treatments, acupuncture, cupping, practically everything in the pharmacy, but unfortunately, nothing helped. Then my cardiologist even forbade me from taking migraine medication because it wasn't good for my heart. I was close to despair until I found a fantastic neurologist. After various tests, he started giving me Botox injections. Since 2009, it's been covered by health insurance. I get Botox injections every three months at 31 points on my head, neck, and shoulders. The result: I've had about 85-90% fewer attacks since then. I highly recommend it.
Just like all of you, I've received, and still receive, "know-it-all" advice. :-(
I've had migraines for 19 years, and what can I say? It's driving me crazy!!! Always those incredulous looks when I
have another headache, and the comments: "It's not that bad today," as if my colleague knows better than I do when I have a migraine!!! Outrageous and ridiculous. Sometimes I just lie in bed crying from frustration and pain.
I'm in my mid-40s now, so I still have a few years ahead of me. The only one who takes me 100% seriously is my husband.
I sincerely wish you all as few attacks as possible.
The worst thing for me was a doctor at the rehab clinic. During our conversation, I mentioned that I found it very strange that the rooms were so noisy and, unfortunately, there was no way to darken them. This is absolutely essential for me during a migraine attack, especially since they specialize in migraines. I also missed having a quiet place to retreat to. In short… everything was far too hectic and noisy for me.
His reply: Then go to the spa gardens. It would be quiet there.
Well, the only problem is that walking during a migraine attack isn't exactly my strong suit, and I'm just happy if I manage to get to the toilet without making a mistake. And the connection between "shadow" and "dark" doesn't make sense to me either.
He really knew his stuff! Unfortunately, he wasn't the only doctor who spouted such nonsense. After that rehab, I was really sick.
Oh yeah, those are all really great "tips" for migraines. I'm getting so sick of hearing them. I inherited my migraines from my mother and have suffered from severe migraine attacks for as long as I can remember (so from about age 4, maybe even earlier). I've tried EVERYTHING, been to so many doctors, tried every medication imaginable. Nothing really helps 100%.
I constantly have to listen to people saying that as soon as I have a beer or a cigarette, it's "no wonder" I get a migraine. Sure, I'm a heavy drinker, because of one beer on the weekend. >:(
Especially since I didn't drink or smoke at age 4! It's amazing how these people think before they speak.
I hope for all of us that there will soon be truly effective means that make our lives with migraines easier or even free us from them.
Until then, all the best to you :*
I'm now in my early 50s and have suffered from migraines since early childhood. Of course, I'm familiar with all the stupid remarks, insinuations, and supposedly clever advice from people who have no clue.
The best thing I've heard so far was from some esoteric woman: "Your migraines could be punishment for being a bad person in a past life." Okay, if that's the case, then I certainly deserve the suffering :-D.
Hi everyone. The latest bullshit bingo comment about my migraine was: "You look at your phone a lot, such a small screen, no wonder you get eye strain, blah blah blah..." Which is complete rubbish, because the last attack started with a massive, jagged, shimmering aura outdoors, at the edge of the woods, by a pond, while we were loading a canoe onto a trailer.
"Eye strain." That tops quite a few classics.
What's annoying about "my" migraine these days is that I'm pretty wobbly, dizzy, weak, and queasy for up to three days, even after the headache (or pain behind the eyes) has subsided. I can still do something, but only on a shoestring. Curiously, what helps me is diclofenac. For whatever reason. The attacks used to be "sharper," more concentrated. I've had this crap for 34 years, thankfully only six to eight times a year.
My migraines started when I was 18. Back then, it was "only" headaches and a watery eye every few months. The attacks gradually became more frequent, now accompanied by nausea and vomiting, visual disturbances (but no aura), loss of appetite, sensitivity to noise, smells, and light, as well as extreme irritability. In really bad cases, I even experience tingling and numbness in my extremities and face, severe finger cramps, and speech difficulties.
Now I'm 26, and last month I had a whopping 23 attacks (the average is 15-20 attacks per month). Of course, I'm also clearly overusing medication, but I simply couldn't cope without it. Every second is agony, and the mere thought that an attack could last 1-3 days without pills drives me crazy. Especially with my 40-hour work week, I can't afford to skip a pill every now and then during an attack. After taking it, it usually takes 2-4 hours until my head feels somewhat "normal" again.
All preventative measures I've tried so far, such as beta blockers, antidepressants, and even dietary supplements (Migravent), have been ineffective.
And then you get these incredibly helpful comments from colleagues or acquaintances:
“Are you drinking enough water?”
“Have you ever tried homeopathy?”
“Have you ever had a massage? You probably just have muscle tension causing it.”
“I sometimes get headaches too, then I take an aspirin, lie down for half an hour, drink a coffee or a cola, and then it goes away.”
“If you don’t try treatment xyz (usually it’s homeopathy or other alternative methods), it’s your own fault that nothing changes.”
“Scented oils are supposed to be really helpful!”
“Try changing your diet or cutting out certain foods.”
This is just a small sample of the wonderful advice and comments.
Often I don't even dare to name the illness because so many prejudices arise, or migraines are equated with just any headache. Even worse: many people who simply have a headache think they've also had migraines and know exactly what it's like, and that I shouldn't make such a fuss. It's amazing how society manages to make you feel ashamed of your illness or even blame you for it! It's sad that migraine sufferers are often ridiculed. Sometimes I think it would help to rename the illness.
My life now looks like this: I hardly do anything besides my job, since I often have to rest after work due to an attack. I usually get them in the evenings and on weekends. Sometimes they even happen in the morning right after I get up (great way to start the workday). I don't smoke and I drink so little alcohol these days that I can count my annual consumption on one hand (I even forgo a glass of sparkling wine for a toast now). I'm only in my mid-twenties and I can't enjoy life nearly as much as I'd like or as much as my friends do. I used to love going out, but now I always carefully consider whether to go and usually decide against it. Very few people understand how drastically a migraine condition changes your life and leisure time. I can't even take a nap anymore without waking up with a migraine, and I often suppress feelings like sadness or anger because even that triggers a severe attack. I'm so often lethargic and exhausted by the smallest things. Not to mention the housework, which so often gets neglected and then just keeps piling up.
Besides the pain, the loss of quality of life and the lack of understanding from society make the illness unbearable.
My silver lining: My mother has suffered from migraines since childhood, has taken early retirement in her early fifties because of it, and has a severe disability card. Although I wouldn't wish this illness on anyone, at least I have someone in her who completely understands and supports me.
My post is a bit longer than the others, but I just had to get this off my chest!
My stay at the Kiel Pain Clinic is finally next month, and I'm looking forward to a supportive environment free of prejudice, new insights, and hopefully some improvement...
Much strength to all fellow sufferers out there!
A question I hear again and again: “Do you drink enough?”
What am I supposed to answer… “No, I’ve had migraines for 15 years because I don’t drink enough”?!?! What utter nonsense.
Or another popular one: “It’s the weather.”
I've had migraines since I was eight years old. Now I'm 55. The intervals between attacks have steadily increased, and I'm experiencing up to 17 attacks a month. A normal life is almost impossible. I've tried pretty much everything – diets, relaxation exercises, stays in pain clinics, psychotherapy, and medication – all without success. Of course, I'm familiar with almost all the well-meaning advice mentioned here. What hurt me the most was the doctor's comment after the birth of my first child, when I was 24. The pregnancy had been migraine-free from the fourth month onward, but on the day of delivery, I promptly had my first migraine attack again: "Well, you should be happy about that; then the migraines will probably disappear after menopause!" Great, whether that's true or not, I still don't know!
Also very “helpful”… just eat an apple, but it has to be green!
Or: …run some cold water over your arms, then it'll be gone immediately!
I tried it (desperate times call for desperate measures), but what can I tell you, it doesn't help!!!
My favorite, though, is when the pain comes, just let it go again… haha
Thank you so much for the article and your comments. I completely agree with everything.
The best thing I heard was:
“Do something about it, things can’t go on like this. No matter what it costs.”
You just want to scream!
Hang in there.
Having suffered from migraines for about 30 years now, since my youth, I've heard almost everything so aptly described in the comments. One of my favorite sayings—no, I'll share two: "
You know you can get rid of it with proper breathing, right? You're breathing too shallowly!"
and "
You have to approach your illness positively; it's teaching you something."
The only thing I learned from this is how to control my aggression in response to such remarks!
Thank you all for sharing your stories.
To those who are suffering
I've been keeping a diary for months. My attacks (2-4 a month) often start when I'm confronted with decisions made by my inexperienced boss, for example.
The throbbing pain in my head intensifies, the nausea increases, the pressure in my eyes rises, I start vomiting, and then the weekend is over.
My family doctor:
“You have the problem – you also have the solution. Try to interrupt the automatic thought patterns that trigger the migraines.”
He didn't explain how, though. I'm approaching 50 now and I'm incredibly frustrated by the precious 3-4 days of my life that I simply lose each time.
My family doctor replied:
“You are not the only one suffering. Look at the pain in the eyes of your loved ones; they are suffering with you.”
Great, now I'm going to feel guilty on top of everything else..
Hello, my dears!
I've been suffering from migraines for four years now, which most people probably wouldn't consider a long time. At first, I was told it was definitely due to puberty and would most likely stop once I turned 18. Well, I'll be 18 in four months, and lo and behold, my condition hasn't changed.
When I had my first migraine attack, I didn't know what was happening and ignored the intense aura while trying to read a book. After these attacks became more frequent, I decided to go to my family doctor for an examination. I hadn't considered the possibility of migraines; at that point, I knew absolutely nothing about them. This doctor was stumped and referred me to a neurologist, whom I couldn't get an appointment with for three (!!!!) months, after I'd had three more attacks. At the neurologist's office, I underwent tests, including checking my brain waves, etc.—you know the drill. The result: no abnormalities, everything normal. A follow-up appointment took place after the examination, and the doctor told me to keep a headache diary and come back in three months. So, I had another three months of suffering ahead of me.
After looking at my headache diary, she finally realized that I had migraines. She first prescribed me migraine therapy in the form of tablets, when this didn't work she prescribed sumatriptan, which unfortunately also didn't help me.
I no longer even have tablets or anything else for migraines, as my doctor no longer prescribes anything because I seem to be resistant to any migraine medication.
It's awful and it's not getting any better. Last April, I had the worst migraine attack of my life after my grandfather died. To this day, I don't know if it was due to the intense emotional stress or the fact that I'm no longer receiving treatment.
I've already been checked for tumors and blood clots in my brain, but nothing was found. My life is so hard because of the migraines. I'm missing a lot of school, which I never used to. Of course, this is affecting my grades. Next year I'm taking my A-levels and I'm terrified of having an attack, because that's exactly what happened during my middle school math exam.
I'm so limited and I really don't know what to do. My family doesn't take my migraines seriously and says I'm just imagining them. I think it's awful that people who don't know this pain dare to judge us based on attacks.
Stay strong, you can all do this!!
My top two idiotic reactions are still these:
– “So, have you had too much to drink again?” (During my school days, I eventually got a reputation as a heavy drinker. Whenever I dared to go to a party, which wasn't very often, the exertion (dancing, etc.) often triggered an attack that quickly became so severe that I eventually had to find the toilet and throw up. And that was despite the fact that I had only drunk water all evening.)
“This is clearly due to all the pills you're taking. If you ever take even one more pill in your life, it's your own fault. Stop immediately and completely.” (Quote from a neurologist(!) after glancing at my headache diary for a mere three seconds. At the time, I was taking medication about seven days a month, usually one or two paracetamol tablets for lack of alternatives. Unfortunately, she didn't suggest any alternative treatments. She ordered an MRI, and when that came back clear, I couldn't even get a follow-up appointment with her – “There's nothing wrong with you.”)
I've suffered from migraines since my teens. I'm 38 now, and the migraines have changed. I used to "only" get terrible headaches and be sensitive to smells and light. I'd lie down, sleep, and wake up feeling fine. Now, an attack lasts at least 24 hours. If I wake up with a headache and the painkiller doesn't work, I already know how the rest of the day will go. If I try to push through at work, I start breathing differently, which makes my hands and feet go numb, sometimes leading to total cramps. If I keep going, I'll be throwing up.
On a day off, I try to do some housework very slowly and listlessly. It just doesn't work, and before I feel like throwing up, I'd rather go to bed with the window open. And then it's sleep, sleep, and more sleep.
My previous employer once said to me, when I was whiter than a sheet again and asked if I could go home... well, because it's Wednesday. I'd been getting migraines every Wednesday for a while.
A colleague of mine was totally annoyed at the time... "Come on, get yourself checked out already, this isn't normal. Someone from our team always has to cover for you." Ugh, I just snapped because she'd already said something like that before. I yelled at her, asking if she thought I hadn't already and was deliberately getting migraines. I'll gladly pass it on to her. After that, there was peace and quiet.
Another colleague said... "You look awful, like you've been on something."
Imagine, that's how I feel.
Or even better are those checks during breaks to make sure I'm not smoking. Seriously, people, it's incredibly annoying. When you have a migraine, you don't want to smoke, or you try, only to put it out again after one puff.
The headaches eventually subside, but what remains is this terrible nausea in my stomach and head. I always say my stomach and head just aren't getting along.
Regarding the sensitivity to smells… once I had just changed the sheets and then had an attack. Luckily, I still had the old sheets in the laundry basket. Those freshly washed sheets, smelling of fabric softener, made everything worse. So, I put the old sheets back on. ????
had chronic migraines since childhood.
Only dolotriptan (sumatriptan and almotriptan) works in high doses if taken early enough, but the side effects are terrible and have damaged all my organs. But I'd rather have stomach aches, kidney pain, etc., than the pain of a migraine. I think a new word should be created to describe the cruelty of this feeling. "Pain" simply isn't enough when you're thinking about dying, to get rid of this feeling. Yes, and now those who don't suffer from migraines will think, "Oh my god, how exaggerated," but my skin is getting thicker and thicker when it comes to these thoughtless comments, looks, or thoughts from others! It's getting thicker, but I still can't ignore it, especially when it causes problems at work because of selfish, unempathetic, and intellectually challenged people. If someone told me, "Work twice as hard as others and you'll never have a migraine again," guys, I would work THREE TIMES as hard, simply out of gratitude and joy at never having to endure that horror again!!!!!!!!!
Much strength to all fellow sufferers, we are apparently not as alone as we often feel!
It's truly appalling when almost all sufferers share a common, negative experience. Why is it so difficult to accept migraines as a serious illness? Don't we suffer enough during attacks? I'd rather listen to a stupid comment every day than constantly take countless medications just to be able to lead a somewhat normal life.
I, too, have suffered from migraines since early childhood. My ears have had to endure quite a lot. But my bad luck was that I ended up with the wrong doctors.
My trust in doctors has severely impacted my life. I felt let down.
The best statements from doctors
Feel free to drop by if you have a migraine attack, then we'll see if I can help you.
The other doctor didn't believe me because he couldn't imagine that I suffered not only from migraines but also from regular headaches. So he gave me a medication that unfortunately triggered a migraine attack, which wasn't planned. His words to that effect were,
"Oh, now I know, you have lice and fleas!"
Just stumbled across this... Thank you so much!
I've had migraines for a good 30 years. Initially, a few a year, more frequent during my first pregnancy, almost nonexistent after giving birth, but with my second child, they returned massively. This gives me hope for a change. Only with triptans did it become bearable. No, almost good. Because as long as the effect lasts, I'm pain-free.
I know all too well the great advice from others, although I hear it much more often because of my sun allergy. My go-to suggestions are "ignore it" and "toughen up."
I think all chronically ill people are familiar with these remarks.
Hello fellow sufferers,
finally a site and like-minded people who take me seriously. Thank you for that.
I could also share a few "lovely" comments that I constantly have to listen to, for example: You need to exercise more / You need to toughen yourself up more so you're not so sensitive to the weather and your hormones are more balanced / You need to switch off from stress better / or even better: get your head checked out already, this isn't normal, maybe you have something in there. Great, that really builds me up. And honestly, after these mantra-like repeated "tips," I'm starting to get a real fit myself, though not a migraine attack. Warm regards to all those affected and thank you to the pain clinic that offers this website on this topic.
Dear fellow sufferers,
It feels good to read all your comments and know I'm understood; you're speaking my mind. The world out there has little or no understanding for this. No one can truly understand this devastating pain unless they've experienced it themselves—they simply can't know any better.
It was funny how I recently had another visit to the employment agency's medical service. Of course, the report only stated "headaches," despite a detailed description of my symptoms and a multi-page cover letter detailing my illnesses. I'd rather not say anything more about that. But that's exactly the perception of the so-called performance-driven society in which we live and are expected to function. It's actually ridiculous, if it weren't so devastating, but as a chronically ill person with a multitude of complex conditions, the employment office apparently considers my migraine just a headache, because no single person can (or should?) have so many different (or perhaps related?) illnesses. Since it was about the overall picture anyway, I didn't really care in the end. I'm not fit for work right now regardless, so why fight over the migraine? Give me a break!
I wish you all love, sunshine and appreciation, healing, gentleness and as little pain as possible. Don't give up, life is worth it for the beautiful moments.
Hello everyone,
this article has been around for many years now. And thankfully, it's still here.
I'm lucky I'm not as badly off as you. But I should probably prepare myself for worse. I've had migraines for about 5-6 years. The first time, I thought I was having a stroke, and I had speech difficulties. Thankfully, that hasn't happened since. Otherwise, I have 3-5 attacks a year. I'm 48 years old now. And it's incredibly annoying. I'm trying to live with it. I also have a kind of diary, well, just any scraps of paper that are lying around. They're scattered everywhere now, at work, at home. Sometimes I find one by chance and think, "Aha, so that's how it was back then." With only 3 attacks a year, you don't have something like that readily available. The problem is, I don't know what happened in the days before, what I ate, or what my day was like, so I can't identify any factors that might trigger the migraines. I think it's not that severe for me so far. After half an hour, despite the headache and nausea, I can more or less get back to work, but of course, very reluctantly. I really don't feel like it anymore in that state. But I know some of you will say, "Lucky you."
I haven't gotten any stupid comments yet because I've always been able to hide it well, and I also have colleagues who suffer from it too. It's definitely hereditary on my mother's side. She also got it at a young age; I should ask her how long she's had it.
The only attack I was really able to handle was once before bed. I suddenly got a visual disturbance (aura), and it was immediately clear what was coming. Nausea was already setting in. So I quickly got ready, lay down, and fell asleep fast. I don't remember having any problems the next morning, maybe just a very mild one, so mild that I didn't even really notice it.
I'm curious to see what else is in store for me.
I wish you all the very best. Thank you for sharing your experiences here.
Greetings
Andreas
PS Since my last attack, about a week ago, I've been experiencing a slight, pressing, stabbing pain in the middle of the top of my head; I think it's from the migraine.
Hello,
It's sometimes so shocking what kinds of comments people throw at you… Here are a few excerpts
- Family doctor: Just get pregnant already, then the migraines will go away. (Unfulfilled desire to have children for three years, history of multiple ICSI cycles with miscarriages.)
- Gynecologist: No, she's not a migraine woman...! There are no migraines during pregnancy, they disappear. Headaches and nausea are really nothing unusual in the first three months. You just have to get through it, like all other women.
- You're too thin. You need to eat more fat. Then you won't have headaches anymore!
- Why do you always lie down? Go for a walk and sit in the sun. The sun will draw the illness out of your body!
- I know that feeling, when I've drunk too much I also get a headache and feel nauseous. It'll pass.
- There are worse things. Be glad you don't have anything else.
- If you have a proper drink, you won't feel the migraine anymore.
- You are the master of your body. If you don't allow the migraine, it won't come...
I could write endlessly… I simply can't understand why migraines are still ridiculed by everyone. If I were to say, "Hey, I have chronic, recurring inflammation of my brain vessels with terrible pain, nausea, and symptoms of a stroke…" what would the reaction of those NOT affected be?
I have chronic migraines…. Thank you for this great article! I've already forwarded it to everyone I know :)
Here are my experiences:
– Why didn't you go to the private doctor in Buxtehude? You would have been cured long ago.
Don't always take a triptan, you can do without it sometimes and function without chemicals!
– You do realize that the triptans are the reason for your constant migraine attacks, right?
– Why don't you massage your neck for an hour? I always do that and then the pain is gone!
Stop overthinking things so much! You're to blame for your own pain!
– Surely no doctor can help you! After all, you only have a headache!
Try simply ignoring the pain!
– When pain comes, accept it and let it pass!
High-dose magnesium would cure you!
– Your hormones are to blame!
– why do you always have to get upset about everything! It's your own fault!
Are you in pain again today?
– In Switzerland there is a healer who would heal you with acupuncture! He says he has done it many times before!
...And and and :)
Hello, I know two other people with migraines, but otherwise I felt pretty alone with it. It's interesting to read how many others here feel similarly/the same way. I've had migraines since I was 8 years old. Back then, they were about every three months. Since I was about 20, it's been once a month. I'm now in my mid-40s and have integrated this reliable episode into my life. "My migraine" almost always lasts exactly four days. The day before the increasing/raging headache starts, I feel really awful. I argue and find almost everything annoying; I just want to be alone. And I feel like I just need to have a good cry, but I never can. The next day, the headache starts, and it gets worse despite medication. Triptans help the most, but some pain remains, albeit slightly less intense, along with all the accompanying symptoms. These include a general feeling of depression/inadequacy, low resilience, severe lack of concentration... and, of course, the severe headache. I work in nursing, so I have to take sick leave regularly. Physical exertion makes things so much worse that I become a burden to those around me. I feel so awful that I only want people I trust to see me like that (family, for example).
I also get intense cravings for carbohydrates. And then there's this strange euphoria after a migraine episode, like I could move mountains. And I'm just so glad it's over. I don't get any disparaging remarks from my family, friends, or employer. I do hear the occasional stupid comment from someone, but that's rare. I just give them the middle finger because it's just plain stupid. I don't justify myself.
Thanks to everyone who has spoken so openly about this topic and "their migraines."
Over the years, I've learned to accept "my migraines" because I can't prevent them anyway. When one starts, I check my calendar and cancel everything for the next three days that isn't absolutely essential. My child is a teenager now, so I hardly feel guilty anymore about not functioning well. I get support.
Yes, that's all I can think of right now. Best regards
Hello, my dears,
So, my favorite "no-go" phrases are still:
– Don't make such a fuss about a little headache
– Change your job and your migraines will go away (quote from a doctor)
– Why don't you eat/drink any more sparkling wine/cheese/chocolate/cocoa? You don't get headaches from that!
– Don't be so sensitive to the weather
I wish you all strength to continue dealing with migraines
Hello.
I'm so glad to find like-minded people! I started getting migraines with and without aura when I was 12. Along with that, I experienced nausea, sensitivity to smells, light, and noise, even to the point of feeling seasick.
My parents just thought I was imagining it and making a big deal out of it.
Even today, you can't expect much understanding, and it's especially bad at work. It's hell having to work with loud equipment and do physically demanding work in that state.
While I know you shouldn't wish ill on anyone, sometimes I just wish these ignorant people would experience a three-day episode with all the symptoms!
Maybe then they'd understand that sticking your finger down your throat isn't perverse, but simply a way to relieve the unbearable pressure.
Sorry, I don't mean to complain; thankfully, the episodes have become less frequent over the years, only 3-4 a month now. Nevertheless, the behavior of "clever" non-affected people still infuriates me!
Thanks for listening, and I wish everyone many pain-free times. Best regards, Tina ????
It's a scandal what people with this disability have had to endure in their lives and continue to endure.
The mere fact that even on a good day I can hardly believe how I feel with a migraine makes me feel compassion for those fortunate enough to be spared this illness and unable to comprehend its devastating impact on an entire life.
My first experience, at age 10, with my then-family doctor, was diagnosis and treatment summed up in a single sentence:
"Once you're married, it'll go away."
After 48 years of this ordeal, my current family doctor's final comment was: "When will this finally be over!"
It takes nerves of steel to endure.
Nevertheless,
wishing you all health and success
, Marianne
I could have cried when I read all this – I feel exactly the same way. I've had headaches and migraines since childhood, I'm 52 now, and I've heard all the more or less well-meaning advice. My mother suffered from it too, but back then her friends, colleagues, family, etc., had even less understanding because migraines weren't a topic of public discussion at all. It really hurts when you're not taken seriously and people simply don't believe you – why don't you go to a chiropractor? / Why don't you try that naturopath? / Have you tried that diet? / Why don't you distract yourself with that? / I know an angel healer. / What kind of head do you have? It's unbelievable! / It'll go away after menopause. / You just need to do some exercise. / Go get some fresh air. / Drink more water. / You just need to have a shot of liquor, then it'll definitely get better. / Get drunk, then at least you'll know why you have a headache… etc. etc.
I've been seeing a doctor who practices Traditional Chinese Medicine for two years now and treats me weekly with acupuncture and special herbal tinctures – the migraine attacks have become less frequent, perhaps also due to my age and the onset of menopause, but I still get migraine attacks, for example, during weather changes, stress, anger, or going to bed late. which then have an effect for a few days afterward.
I am very grateful for this site – it makes you feel understood and not so alone anymore…
I've had to listen to quite a lot myself…
– Drink more water
– Eat/drink something with sugar, that will get your circulation going again
– Your migraines are probably psychosomatic, since you have depression
– Have you ever tried acupuncture?
And a few more things, but those are the most common suggestions.
My attacks started when I was 8 years old, but they only became significantly more regular after I started taking the pill, as hormones unfortunately often contribute to worsening migraines. I've now suffered from migraines for 16 years.
I suspect that my attacks also have a familial origin; my father suffered from migraines, and so did my grandmother (on my mother's side).
I don't get much understanding; my partner is the only one I can really rely on when I have a seizure. My employer just gives me disapproving looks, like most people here. Family and friends accept my illness; they can't change it, after all.
Migraines often restrict me; I only rarely have attacks where I vomit (maybe three times a year). My attacks consist of sensitivity to light, noise, and smells, severe nausea, and significant limitations in movement. These symptoms are accompanied by considerable sleep disturbances, so the attacks can last for several days if I don't get enough sleep and rest.
To all fellow sufferers: Hopefully, one day we will be understood, but it's good that we understand each other and can relate to our suffering.
Stay strong!
I'm rarely taken seriously when it comes to migraines. They often strike on weekends, which means I can't go out partying or anything like that. The best comments I get are things like, "I've become such a bore." Or, "You always have something going on... if you focus on the pain so much, it won't go away." How are you supposed to distract yourself from pain like that? All I can do is lie in bed, can't talk, and I already feel awful enough when everyone else is out and about and I'm sick for two days a week. Even doctors don't take me seriously. Tips like "you need to drink enough water" come from people like that – it's unbelievable.
A comment from a senior physician at a psychosomatic clinic during a lecture on psychosomatics: "Migraine, for example, is an expression of anger – suppressed anger causes headaches" – heard in December 2017. But we're all used to that kind of thing by now; perhaps the lady should take some further training… MERRY CHRISTMAS TO EVERYONE… and if it's all too much for you, take an hour to yourself.
When you come back to work after a migraine attack, it's also nice to hear: "I'd like to have a migraine too, then I could stay home for a day."
It's so liberating to find understanding here. I usually get advice from older people: - Spend less time on your phone or watching TV
- Go to bed earlier.
My schoolmates annoy me because they complain about their mild headaches as if they were dying, and because teachers and students accuse them of skipping school, or because people don't take my illness seriously or downplay it.
Reading the comments brings tears to my eyes – no, I'm not alone. I experience all sorts of pain, including migraines, or even migraines and headaches at the same time. Medication with triptans in the form of orally disintegrating tablets has also made a big difference. Thankfully, I very rarely feel nauseous.
My personal favorite comment among all the remarks: "Don't make such a big deal out of everything!" – Speechless!
I send my very best wishes to everyone affected.
I have to say, I'm really lucky in terms of my environment. I've never had a stupid comment made about me; maybe it's because I always look incredibly pale and miserable during an attack, so my colleagues explicitly send me home.
My family doctor also approached the whole thing as an (organic) illness and not as "you need to work through your problem".
So the external circumstances are quite pleasant. The migraine itself, of course, is not, although I find the nausea almost worse than the pain. During an attack, I also have an aversion to water and have to drink other beverages. When the attack is over, I'm – although totally groggy – strangely euphoric and crave fries with mayo (which I otherwise rarely eat).
Pain-free days!!
Greetings,
Kylling
My top 5:
– Think of a butterfly.
– Now put that aside and get on with your work (family doctor).
– Perhaps your illness is trying to teach you patience.
– Have a child, and the headache will go away. (And what if it doesn't?)
– Everything has its price. (He was referring to my artistic talent, as was the family doctor.)
Also, some very “encouraging” advice: “Migraine is a thwarted orgasm. Let yourself go during sex and the migraine will disappear.” “It stems from childhood trauma; have you ever been in therapy?” “Are you stressed? Overwhelmed?” What reassures me is that carbohydrates are important for people who suffer from migraines. I eat a lot of chocolate before an attack and tons of pasta during attacks; I should actually be severely overweight—but I'm not. I always feel like my body simply needs much more energy than usual during those times. When the migraine is very severe, I can't consume anything at all. Not even water. To avoid dehydration, I regularly put water in my mouth. This can go on for two or three days, but thankfully, it's extremely rare. I've even been to the emergency room because of it.
Reading all the comments here makes me feel understood and no longer alone. I could repeat everything that's been shared here so far, but that would make this page far too long. I'm 32 (slim, no diabetes) and have suffered from migraines since my early 20s. Just yesterday I had another attack that caught me while I was asleep. I especially love that. It's difficult to explain or describe these pains to someone who doesn't experience them.
And I've also noticed among my friends and acquaintances that many don't even know the difference between a "normal" headache and a migraine. In those moments, I'm still grateful for any painkiller offered. Yesterday, for example, I was out of painkillers and overjoyed to at least get an ibuprofen 600. While the majority of the pain was gone, the rest lingered throughout the day. But at least I was able to work. Because you're also embarrassed about it and don't want to run to the doctor every time you have an attack. At least, that's how I feel.
And I've already received various "tips" like...
– Do more exercise
– Drink more water (yawn)
– You should take a closer look at your life circumstances and see what the cause might be and eliminate it. (yeah, right)
– Avoid stress at work (haha)
– Eat less chocolate (Nope!)
– etc.
And the worst part is that my family doctor gives the same advice. She asked me if I suffer from depression (that was the first thing she asked me) or if anything was bothering me, etc. It's nice that she cares about me and checks various things, but you feel completely disregarded, and especially so back then, because I was young. How could I possibly be sick, or even think I was sick? I'm still so young.
And you naturally think all sorts of things at first and want to rule out any organic causes (a completely normal reaction). So, last year, at my request, I got an MRI, and recently a referral to a neurologist. Admittedly, there were long waiting lists, but at least I have an appointment in August. Before the MRI, she asked ME what I thought I saw. Um, no idea. Tell me. In the end, nothing showed up. And a few years ago, I had an EEG that only partially detected some irregularities, which weren't investigated further.
I've tried everything: aspirin, ibuprofen, sumatriptan, etc. The triptans help a lot, but they really affect my circulation. I try to take as few pills as possible, especially not preventively. I'm trying not to become dependent. Now I'm thinking about applying for a rehabilitation program. I've been considering it for years, which is why I came across this website. Let's see what my doctor says. :-) My attacks aren't as frequent as they were at the beginning. Back then, I had them two or three times a week. Now it's "only" once a week, and it's so intense that, like some of you, I just want to bang my head against a wall. It's nice to be happy about that, but when an attack suddenly appears out of nowhere and you have plans or something else going on, it throws you off balance and you're socially isolated. You never know when it's going to happen, and when it does, you constantly have to explain yourself. What I also have is a permanent "brain fog." I'm constantly unwell because the attacks usually last a long time and take such a toll on my body that I can feel the effects for days afterward.
But what I can also say is that dietary changes aren't always just a myth. In the hustle and bustle of everyday life, it happens that we reach for ready-made mixes because we don't have time during the week to whip up a sauce from scratch. Personally, I've noticed that gluten, among other things, triggers my migraines. I also get migraines after eating at an Asian restaurant, and as we all know, they cook exclusively with gluten. So I've avoided it and have been cooking only from scratch for years now, and lo and behold, it's gotten better. Cutting back on meat has also reduced my migraines somewhat. I don't know if it's just my imagination, but I can confirm it.
Thank you all for your experiences and opinions on this topic, and I wish you all the very best!
Stay strong.
Greetings from Berlin
Hello, yes, what I usually hear is, don't be such a baby, everyone gets headaches sometimes.
Nobody sees that I've been in so much pain for the past four weeks that I could cry almost every day. None of the people who haven't experienced this can imagine how it feels when you're simply unable to participate in even the most basic aspects of daily life. Eventually, you feel isolated and abandoned because nobody can help you so quickly. I've already seen countless doctors, had CT scans, an MRI, and the next doctor I see is a neurologist. So far, nobody can figure out what's causing my pain.
Yesterday, an acquaintance told me I should just take a pill. When I told her that I take Tilidin twice a day, Novamin 30 drops three times a day, and Pregabador twice a day to make it bearable, she shut up. She knows about this stuff because she works as a pharmacy technician.
I'm having problems with depression again, so it's really difficult for me to do anything at all. I'm not allowed to drive, except in absolute emergencies, which means I'm always dependent on others. I appreciate having friends and family who practically fight over who goes shopping with me or something like that. But still, the whole situation is just incredibly stressful. The last thing you need when you're dealing with this is a bunch of well-meaning advice from people who have no clue.
Hello, I'm on the verge of an attack and was searching the internet for information again. I'm on the verge of being hospitalized. I'm 28 years old and female. It plagues me three times a week. My daily life is restricted, and I can only work three days a week. Nobody there understands. They say I have a headache and it's my own fault. It makes me very sad. And when I think about these situations and read your comments, I get tears in my eyes (I wish nobody else had to suffer like this). It's not the worst pain I've ever experienced (I had a body part bitten off), but it's the worst state. Vomiting 13 times in an hour is manageable. But you can't think straight and you bang your head against something. Both my parents have this, and I've read it's hereditary. I so desperately wish that something would be found quickly that makes the attacks less frequent or even eliminates them altogether. Nobody can imagine what it's like, and you wouldn't wish it on anyone.
Nothing helps me except triptans. No painkillers work, and I can't sleep. Sometimes I have to take three triptans because I spit them out. I'm copying in a text I wrote after a colleague didn't take me seriously, since many other female colleagues were using migraines to avoid work.
I can't today, I have a migraine… I don't give a damn about the headache
That's right, people who suffer from migraines can certainly live with headaches. Of course, they're part of migraine.
I'd like to clarify a few things here. A headache and a migraine attack are two completely different things, neurologically speaking. With a headache, the blood vessels in the brain constrict. During a migraine attack, they dilate. And that's why painkillers will never help with migraines. (It's still nice to be offered painkillers when you say you have a migraine.) And as if a headache (so intense you feel like banging your head against a wall) weren't enough, you also have to deal with other things: vomiting, hours of nausea, fatigue, fainting, dizziness, circulatory problems, speech difficulties, visual disturbances, and much more. This huge difference is now recognized as a neurological condition.
Many people simply experience intense pressure in their head and need darkness. Some have such severe visual disturbances that they can only perceive half of their surroundings, and then there are those who vomit for hours and feel like drilling holes in their heads. Anyone with such symptoms certainly doesn't have a headache or try to avoid doing something. Because nobody would wish such conditions on anyone. And then you suffer from this illness and have an attack. You have three options:
1. They deny it and don't take you seriously.
2. They listen to you and learn.
3. They are affected themselves.
I've experienced it all myself.
I wouldn't wish it on my worst enemy for even five minutes.
I'm glad that some people are understanding. And then there are those people you tell this to, and they don't believe a single word (they probably don't have Google). You can explain to these people for hours that migraine isn't just a headache. They simply don't accept it. When you're suffering, you almost want to cry. They think you're trying to avoid something. But migraine sufferers are more likely to go to work with their nausea than people with headaches. I'm not saying that headaches are nothing. I just want to stop comparing them.
If you've read this far, you're welcome to know why I'm writing this.
I've been suffering for eight years now, and I experience it twice a week. I'm fed up with not being taken seriously. And even today, I still meet people who don't take me seriously. I'm tired of having to justify myself. I've had enough. I reach a point where I can barely walk or speak. The worst part is that I've practically married this nausea, yet I still go to work. Please, nobody tell me it's just a headache.
I know those comments all too well. I often hear them from family: "Do you have to take pills again? You're practically an addict!" (If I don't take painkillers at the first sign of a migraine, I can either climb the walls or hang over the toilet for the rest of the day). At work, no one really takes it seriously either; my colleagues usually leave my tasks undone because they don't understand my (very limited, despite the migraines) absences.
Hello everyone,
this morning I was surprised by a migraine while sleeping in bed… A little about me: I'm a geriatric care assistant with a license to provide treatment care, and I've also been dealing with aura migraines since my youth.
I can completely understand all people plagued by migraines, because it's hell to suffer for several hours or even days with excruciating headaches and all the accompanying symptoms like vomiting, light sensitivity, aura symptoms, depression, diarrhea, and so on… It can even lead to being unable to work, and anyone who doesn't understand that hasn't looked into this condition… What helps me, however, is a regular daily routine, when it actually works out, sufficient sleep, drinking plenty of water, having someone to talk to, some exercise, and a carbohydrate-rich diet, but without cheese containing natamycin, as that's a trigger…
My migraines are apparently hereditary. My father, my uncle, and my grandfather all had them – but mine are hormonal. I get an attack once a month that lasts about 72 hours. I'm always sensitive to noise – I'm only sometimes sensitive to light – and nausea is also only occasional.
People around me react differently. A former colleague once said, "You always have something going on. Don't make such a fuss. I get headaches sometimes too." My family is considerate: if Mom has a light on the sofa or bed outside of normal hours, then it's quiet time. Unfortunately, I haven't found a solution for myself yet. I don't want to take estrogen tablets. I'm hoping it will stop after menopause (since it started during puberty). My youngest son also gets migraines, but only once in a blue moon – thankfully.
Our now 7-year-old suffers from migraines. It took us a while to figure out it was migraines. He was about 4 years old when we looked at each other and said for the first time, "It's a migraine." We'd known about it for a while; he would scream, later clutch his head more often, couldn't be calmed down, get angry, vomit a lot, fall asleep, and thankfully, by the next morning, it was always over. Poor thing! We were there for him, but in his early years, we couldn't figure out what it was. Today, he tells us when he gets a headache. He has an aura. Now he gets Nurofen early because it prevents him from plunging into such excruciating pain. He tells us when he needs to vomit. He knows everything himself. ... A comment helped me this evening. Yes, our son is a child who takes in and processes far more impressions than others. He's emotionally richer. He thinks about a lot. He has to process what he's experienced. He doesn't filter stimuli; he takes them all in. One comment mentioned brains that need to perform at a higher level and shouldn't be undernourished. I'll be paying closer attention to this, because today was a very busy day, and our son had a lot to do, both mentally and physically, but he ate far too little. Too little sugar for his brain. He's also someone who enjoys eating. Perhaps he instinctively knows his needs.
As a mother, I can only confirm that this pain must be unbearable! I didn't do this before and have always lived by the saying, "Don't judge others for who they are." The few severe headaches I've experienced were bad enough. I would take away my son's suffering if I could. Many thoughts about my possible shortcomings have haunted me.
It helps me to learn from others who have gone through this. Thank you for your input, and all the best.
—–it should read “They hide behind the headaches”
…I've had tension headaches since I was 16 and migraines since my mid-20s! Now at 65, they're still there!
I know all those sayings only too well! The best one was: "They're hiding behind the headaches!" (Therapist's exact words).
Right, I hide behind diapers too! I always thought the days of such uninformed people were over.
Homeopathic remedies and homeopathy might help believers, but not the informed person, because they care.
Especially since the internet offers so much more these days. Please, no more advice, just understanding.
Dear fathers, take the children off the mothers' hands, play with them, and leave your wives alone!
No, not just for half an hour, but all day long, even when Formula 1 is on or your football match is about to kick off!
Oh, and you can also make dinner for the children and put them to bed! That'll help!
People never believe me when I say it's really that bad… Everyone just says, "Oh, it's just a headache," but that's not true… I wouldn't wish the pain migraine sufferers sometimes have on me, not even on my worst enemy
I also think that migraines are far too often downplayed. Many people just think you can take a headache pill and that's it. I always get migraines in humid weather. Then I have to go to a dark room with a cold towel on my head.
So I have mixed feelings about this post.
Nevertheless, I enjoyed it.
Hello,
I've had migraines for as long as I can remember. My mother said the first attacks started when I was about 2 or 3 years old.
I'm 19 now. Migraines have dominated my entire life so far, as I suffer from them almost daily during bad spells, while at other times they only occur occasionally due to changes in the weather, dehydration, or other factors.
Since I've always taken Nurofen since my first attacks, and even today the 200mg tablets (for young children) help me (or rather, make the migraines disappear completely for a while), no doctor has yet seriously considered my condition or been able to tell me exactly what I'm suffering from or what can be done about it.
If I don't take medication, it gets so bad that I double over in pain and vomit constantly (and it has never gone away on its own without medication).
However, I don't want to take pills almost every day for the rest of my life.
Has anyone had similar experiences or have any tips for me?
I've had headaches since childhood, which have gotten progressively worse over the years, and eventually it was diagnosed as migraines. Today I'm 47 and still get migraines 3-4 times a month. About 10 years ago, a doctor at the university hospital in Jena recommended Imigran injections (a maximum of two every 24 hours) and Ibuprofen 800 mg extended-release tablets. This is the only thing that helps, and probably the strongest. When I have a migraine, I'm unable to drive or go to work. The only thing that helps is lying down and waiting for the attack to pass. But I know it works.
Hello, I've been suffering from complicated migraines with stroke-like symptoms for years. I could write a book about well-meaning advice, tips, and even more ridiculous comments. The best one I've ever heard was: "Just have one or two more children, then the migraines will go away." Give me a break! Even during my pregnancies, I had some severe attacks. In the end, only high doses of painkillers and rest help; darkness is essential. During an attack, I'm completely incapacitated. It starts with vision loss and ends with complete neurological collapse. I've had to endure many hospital stays. What's much worse is that many people think I'm a bad mother because when I have an attack, my husband has to take care of our child. That's not true at all. I would much rather spend time with my child than lie in the dark, struggling with severe pain. And anyone who says, "It's just a headache," I wish they would experience just one day of migraine. They have absolutely no idea what life with migraines is like.
I'm probably one of those people who were diagnosed with migraines very early on… it's been clear since I was 7 that I have migraines with aura.
I'm 14 now and still in school. So I get comments like, "I get headaches sometimes too, but you can still go to school!" It's kind of nice to hear that I'm apparently not alone. That's just how it always is at school :D
Love, Sarah
I have up to 17 attacks a month. Sometimes an attack lasts 7 days, after which I'm completely exhausted. On top of my cancer, which also causes pain, I'm almost never pain-free.
It's a shame that some people don't understand.
Hi :)
I've suffered from migraines with aura since I was 8 years old. I'm almost 20 now, and only this year did I stumble across something that has made my attacks disappear. My mother pointed it out to me: a study by researchers found that the brains of migraine patients are more efficient; we perceive movements and stimuli through our eyes more effectively (which is why we're usually more sensitive to light). This means our brains need more energy, and if they don't have it, an attack can occur. Therefore, you should pay attention to calorie-rich foods and absolutely avoid calorie-restricted diets! It's worked perfectly for me so far. Of course, you have to keep in mind:
1. My migraines were always irregular and occurred at least every two months.
2. My migraines progressed like this: 20 minutes of aura, then 3 hours of headache and nausea, so about 3-4 hours of migraine itself – which, as I learned from forums, is very short.
3. Every body is different.
But even so, if you haven't already tried it, I would recommend it to each of you :)
I myself am still testing it and have been migraine-free since January.
I hope this can help some of you. Even though my migraines don't last that long, I hope it helps those with more severe migraines too!
I've had migraine attacks for six years, occurring about once a month, sometimes twice, and lasting an average of three to four days. For over four years, I told several doctors that the attacks were getting worse and worse, sometimes lasting up to five days, and that I also became very depressed. I was always told that it wasn't migraine, because migraines only last six to twelve hours. A year and a half ago, I pleaded with my then-family doctor again, quite desperately, for some medication that might help, but he said there was nothing available. A naturopath who gave me acupuncture told me after five treatments that I absolutely had to get a prescription for a triptan. He said I should specifically ask for it, that he believed I had migraines and that his treatment wouldn't help, but the triptan might. Then, he said, we'd know for sure that it was migraine. I then had to see two more general practitioners before I found someone willing to prescribe sumatriptan. It helps me quite well (sometimes 50mg for the whole day and night, sometimes I need 100mg morning and evening). While I often experience dizziness and a euphoric feeling as side effects, after all those depressive periods when I felt like my head was going to explode, I don't mind them too much. The fact that I was strung along for so long by doctors who should have known better still upsets me, and I resent it personally. I see it as a form of assault that it wasn't prescribed to me sooner. Even now, I often think that I did something "unwise" that triggered an acute attack and that it's my own fault. That's why my sister recently sent me an article from the New York Times that analyzed countless studies and came to the unequivocal conclusion: AS A SUFFERER, YOU HAVE NO INFLUENCE ON YOUR MIGRAINE. It would be nice if more people knew this and didn't recommend some kind of detox weekend or other nonsense.
I never used to get headaches… it only started around age 20, with migraines. Now at 38, I don't get headaches anymore, just migraines. I've tried everything. I don't know why I get migraines. They disappeared during my pregnancy and while breastfeeding. After that, they came back, but very slowly. I didn't start taking the pill again until two years later. Now I'm considering stopping the pill for good. When the weather is bad, I get attacks on both sides of my head, left and right. Only sumatriptan helps for about 10 hours, but not always. Sometimes the effect lasts two hours, and then I feel awful for another two hours. It's always best if I take it an hour before going to sleep. I can somehow manage the pain during the day. I always go to work. What's a sick note? Then I'd just be sick all the time. I have an attack that lasts for three days. Before my pregnancy, I even vomited, but I don't do that anymore. Acupuncture? It helps if you believe in it, but it's costing me a fortune.
Thank you for the great report!
The article hits the nail on the head!
What I find worst of all is the feeling of having to justify my migraines and the accompanying periods of incapacity to the people around me (partner, friends, doctors, neurologists, physiotherapists) and of being responsible for the chronicity of the condition. I could do this or that, and then everything would be better… A physiotherapist once told me I should focus more on my legs and less on my head and do squats regularly. Yeah, okay.
Generally, there's a lack of understanding for invisible illnesses. I mean, you're in so much pain that you think you're going to lose consciousness, and yet you have to apologize to others for not being able to walk, sit, speak, see, hear, eat, do anything?! Or rather, you have to listen to how annoying you are… Unfortunately, I've experienced this in several situations. Does someone who's in pain and needs to rest because of a broken leg really have to listen to that? I don't think so. Okay, enough ranting. I just had to get that off my chest.
And for those who want to know how to deal with someone who has a migraine: Simply leave the person alone during the attack and accept that they are not functioning as usual and are ill. And for a deeper understanding, talk to the affected person about their migraine, ask questions, and learn :)
I've now discovered for myself that my birth control pill must have been a major contributing factor to the severity of my attacks. This wasn't initially considered, as I suffered from migraines even before starting the pill. Since October, I've stopped taking hormones and I've noticed a significant difference. The migraines aren't completely gone, but they're less frequent and more bearable. I'll continue to monitor the situation and will likely forgo hormonal contraception in the future.
Best regards to all those affected and interested.
Hello,
yes, you have to listen to such nonsense. The misconception that certain foods cause migraines is still very widespread. I often have intense cravings for chocolate during the aura phase, which I then indulge. Afterwards, people like to say: "If you hadn't eaten the chocolate, you wouldn't have a migraine." No, damn it! I already had the migraine (aura) before I ate the chocolate!
What annoys me is that even physiotherapists assume that migraines are caused by tension in the neck muscles.
It's incredibly frustrating that you have to talk yourself hoarse to get any understanding, so I stopped years ago.
in acute pain, you don't care about the stupid talk anyway.
I once had a department head who liked to tell me that our department couldn't afford to have employees who were unexpectedly off sick for a few days. I usually ignored such nonsense, and then this happened: For a few days, she strutted proudly around the department, announcing to everyone who wouldn't listen that she had tickets for the Linkin Park concert at the Lanxess Arena.
Great.
The day after the concert, she called in sick.
Stupid.
From then on, I made a point of humming a Linkin Park song whenever she bothered me with her drivel about a "single day off" due to a migraine.
She finally got the message and didn't say anything more.
It's nice when someone else's stupidity gives you a weapon.
The best advice I received after eight years of pain: You need to drink more!
Hi everyone,
you're all speaking my mind.
I'm 27 years old and have been suffering from migraine aura for about five years. I really can't take it anymore because lately I've been getting migraines every few days, and they last up to three days. I can't listen to anything other people say anymore, even if they mean well. Nobody takes me seriously; everyone always thinks, "Why is she exaggerating so much? It's just a headache, she shouldn't make such a fuss." Noooooo, it's not like that at all. It's unbearable; it drags me down so much. Sometimes the pain makes me so aggressive that I just cry uncontrollably for hours. During an attack, I don't care about anything else; I just want the pain to stop.
So, I wish you all a bearable time, good luck, and beautiful days in life.
Thank you so much for the great article. You've put my thoughts perfectly
My son is 21 years old and has had migraines with aura for about 16 years. What I find most upsetting is that my husband, for whom he works, accuses him of being lazy and work-shy :-( After the second attack within 48 hours, he even said he couldn't just kill him. The fact that even some family members don't understand leaves me sad and speechless!
I too have been struggling with the worst kind of migraine for at least 9 months now (initially massive visual disturbances and then headaches with nausea and complete exhaustion).
Yesterday at the hospital, they dismissed it as trivial and made me feel guilty, as the health insurance company supposedly wouldn't cover the outpatient treatment costs for me.
Quite gruesome and terrible.
I wish all those affected the necessary strength, patience and endurance to endure such attacks and such (brainless) reactions from their surroundings.
Best regards from Emilia
Hello fellow sufferers, I've been hit too. Last year I was diagnosed with complicated migraine with aura. It's not a pleasant feeling, let me tell you, when you're practically blind for a while. Before it was diagnosed, it was always dismissed as harmless headaches, and then I had a severe attack that I couldn't make sense of
. I went to the doctor the next day, who urgently referred me to the hospital with a suspected stroke. Long story short, it turned out to be complicated migraine with aura. Since then, I've been trying to get through my daily life as best I can, which I usually fail at. It's also difficult to manage at work because no one understands what migraine actually means. Many think, "It's just a headache, what's so bad about it?" Until I showed them what a migraine is (I yelled at my boss). Everyone went quiet. I was very moody then. It was my absolute lowest point. He barely spoke to me all day. But friends and family have had to experience it too.
My husband took me to the hospital again last week with speech difficulties, numbness, and paralysis on the right side of my body. I was admitted, and only because I didn't get the headache that usually accompanies my migraines, they suggested I see a psychologist, because these symptoms weren't related to my migraines.
As if I were making it up... I was in the same hospital last August with the same symptoms, only without the paralysis/muscle weakness, and there I was diagnosed with a severe case of complicated migraine, and now suddenly I'm mentally ill... I'm at my wit's end...
To all those suffering from this wretched torment, those whose condition has become severely chronic and who can no longer lead a normal life, to those who have tried everything and still have to listen to "helpful" platitudes, and to all those who somehow manage to keep going, I wish you a better 2017 and much strength!
And I thank all the doctors and staff of the Kiel Migraine Clinic for their dedication to the patients and their fight against this disease.
Hello, thank you for your comments, they are very helpful. I've had migraines for 16 years, usually a few days before my period and more often around ovulation. What's important for me is a regular daily routine with fixed mealtimes, sleep times, and exercise in the fresh air. When I get an attack, no pills help me because I always vomit violently and can't keep anything down. I got myself some pre-filled sumatriptan injections, which help break this vicious cycle. You can easily inject yourself or train family members. The pain subsides after about 15 minutes, leaving behind a slight drowsiness. It usually takes me a day to feel completely normal again.
All the best to you all!!!
I myself don't suffer from headaches. But my husband does. He's had these headaches for nine years (they first appeared after a car accident). We've tried everything, from the neurologist, who after a while told him he was resistant to treatment. Then came thermotherapy in the hospital, a cerebrospinal fluid examination (very painful), and treatment at the university hospital. For the past six years, he's been a patient at the Kiel Pain Clinic. He sees us as an outpatient every four months and is admitted annually or every two years. We've tried every medication on the market for treatment and prevention.
We constantly hear, "Have you tried this or that?" Of course, we grasp at straws. But somehow, we feel like it's getting worse. The doctors can't pinpoint the exact cause of the headaches; is it cluster headaches or migraines?
had repeated courses of high-dose cortisone, blood pressure medication (even though his blood pressure is actually too low), etc.
He still works and refuses to let it get him down; he lives his life with me by his side. I'm also the only one who can tell from his voice or facial expression that he's having another attack. You wouldn't wish that on your worst enemy.
All doctors at the medical services of employment agencies and pension insurance companies should take a look at our comments…! We don't just have headaches! We have excruciating pain, unimaginable to anyone who only knows headaches. Imagine raging toothache plus middle ear infection, for 72 hours a day, night. While this doesn't even come close to the pain level of cluster headaches and migraines, it's an attempt to give the blissful non-migraine sufferers a tiny, tiny idea.
During acute migraine attacks with vomiting, which can sometimes last up to 75 hours, you can feel like you're dying a miserable death. At that point, it doesn't matter anymore whether you're believed or not.
My personal recommendation, after medical consultation, is triptans. The only medication that has helped me.
I'd love to hang this up in my office so I don't constantly get all sorts of "well-meaning advice" from my colleagues. The nutritionists are the worst right now. They say you should just eat quark with flaxseed oil and everything will be fine. Well, if you don't want to or can't do that, it's your own fault.
The worst thing I've heard so far is that you're imagining it.
You don't feel like you're being taken seriously.
A terrible feeling.
I know the comments from others and the statements mentioned above all too well. No one can truly understand this pain unless they've experienced it themselves. I was particularly hurt by being labeled as mentally ill. The phrase "Think about what your migraine is trying to tell you" really hit home, as did the idea that the illness should just go away. Over many years, and including my stay at your clinic, I was able to identify my personal triggers. Learning to say no was crucial for me. A lot of practice, a healthy diet, fresh air, and regular exercise have led to me no longer experiencing migraines, but rather occasional headaches that are infrequent and easily manageable. It was a long journey, but it was worth it and has improved my quality of life.
Hello,
I'm 24 and have suffered from chronic migraines for 10 years. This perfectly sums up what I think every time someone says something like that to me. I'm so tired of having to justify myself every time I'm in pain and therefore can't "function." Anyone who hasn't experienced this daily for years has no idea what we go through every single day, and their clever advice is truly infuriating.
I'm so glad to have finally found a site that makes it all clear. Thank you!
Hello,
Reading the comments here makes me realize again how lucky I am. I've suffered from migraines for 15 years (about 6 attacks per month).
However, these symptoms can be managed by taking triptans. I've never had to take sick leave or been absent from work for any other reason, I can do all kinds of sports, and I participate in all events even while taking medication.
I have to say, I hate these pills. While the migraine pain is gone, my mouth becomes dry, my tongue heavy, my reflexes slow, and I think much more slowly than usual. A workday becomes torture because the pills have a drowsy effect on me.
Nevertheless, I should be grateful that the illness does not restrict me and that I can live my life.
Well-intentioned advice is very annoying. However, I've only ever heard it from acquaintances, never from doctors.
Greetings to all.
Dear Mirjam, it's exactly as you describe! I'm lucky that I currently only have two predictable days a month (at the beginning of my period). If I'm unlucky, it happens when everyone is looking forward to nicer weather, ideally twice a week, like this "summer" when it goes from 15°C to 30°C in two days and back again, and then gets warm again. It's awful!
And then, when you're at a health resort and a doctor asks about your medical history, and you say that instead of nausea and vomiting, you have to deal with bloating just before and during an attack, they even doubt that you really have migraines because bloating isn't part of the "repertoire"...
I wish all those who have to live with this illness much strength, and I hope there will soon be more successful therapies!
Mirjam, you've hit the nail on the head! Everything you say is exactly right, and I wish all non-migraine sufferers would read this! !!!!!!!!!
And although I know I'm not alone, this is the first time I've truly felt understood! I too send a smiley and tearful aura-eye while reading this article and the comments….
I have had migraines with aura since childhood. The aura lessened, the migraines settled at "only" 3 days per month when I had my period, but for the last six months they have been worsening again and are now chronic once more.
I've been in psychotherapy for years and tried practically every pill and contraceptive method, including hormonal methods. Nothing seems to help in a predictable way. Ibuprofen has become my best friend, and I'm really worried about just continuing to take all these pills. After all, I'm not just my head; I also have a kidney, liver, stomach, heart, and soul.
I now suffer from depression and an anxiety disorder, as well as a certain phobia of medication, and besides the constant pain attacks, I desperately want to be free of this feeling of being overwhelmed, of constantly having to cancel plans, of not being able to enjoy anything because someone's hand is on my head, half-massaging me, tired, trying to follow the conversations at the table while feeling drugged up, of having to give up my anticipation again and constantly disappointing others! I long to be able to plan normally for once, to actually do the things I'm looking forward to, and to experience that feeling of carefree joy again. Light that doesn't burn my eyes, exercise in the fresh air where too much wind, too much sun, or anything else isn't making my stomach and head flutter. Simply being, without the consequences of pain.
The lack of understanding from others, coupled with my own helplessness and constant guilt towards my own body due to the many medications, is so exhausting!! I always feel only half-dealt… The other half of my life belongs to pain, the fear of pain, and isolation.
I'm also familiar with the 1000 mg Ibuprofen as a recommended dose. It's all well and good if that dose provides short-term relief (greetings to the rest of my body!), but then what? My attacks usually last 72 hours. The doctor's look on his face was blank… More exercise, and above all, regular exercise. Sure. And please, like with chronic migraines, more than half the days of the month? I do it when I can. But I also constantly have other things to catch up on in this shorter lifespan. And I try… I really do.
I've known the tips about cola, water, coffee, lemons, stress, etc. since childhood...
What actually helps me is drinking enough still water, peppermint tea, using an ice pack, getting lots and lots of rest, eating regularly, not consuming too much sugar at once, drinking little alcohol, not bottling up feelings like anger and sadness, and yes, sometimes even sex… All of it provides a little relief. It doesn't make anything go away, though… But it's something.
I'm going to print out this article. Maybe I'll even get it tattooed on my forehead; who knows, perhaps THAT is the solution and the ultimate tip I just haven't received yet… :)
Stay brave and try to find your way, and never forget:
We are good and right just as we are. Whether we suffer from migraines or not, have shortened hours of happiness, stomachs full of pills, or negative feelings. We give what we can, just like everyone else. And in that sense, we are all the same.
I've heard every single one of these sayings at least once. My favorite is always: "Don't close yourself off to new things, listen to your body, it's sending you a signal to calm down." Or reduce stress, change jobs, or whatever... VERY tiresome.
I've had migraines for 27 years (I initially thought my eyesight was bad and I needed glasses), and I have two children. As they say, I've been through a lot of different doctors, tried absolutely everything, and told countless people about it, again and again. The last one said I'd exhausted all treatment options since I was managing well with sumatriptan and was finally taking the pill (or injecting it) early enough. But now the attacks are becoming more and more frequent. And I'm not even counting on menopause anymore; I should be past that by now. But you should never give up hope.
Great, finally a website that clearly explains to everyone not affected by migraines what migraines are all about.
I personally suffer from migraines relatively rarely (5-6 times a year), but I always have an aura of about 30 minutes
before a migraine begins.
I've noticed that my body temperature drops to around 35-35.4°C before a migraine.
If I start running about 15-20 km immediately during this aura, I can stop the migraine.
What remains are mild headaches for the next few hours. My body temperature
then rises back to normal at 36.2-36.9°C after the run (normally, after a long run, my
body temperature briefly drops to 38-38.4°C). I don't know why running helps me, whether it's the improved circulation or the rise
in my low body temperature, but it does help. I only got this tip by chance from another sports colleague
who also suffers from migraines and regularly runs away from them.
Unfortunately, no doctor had been able to give me this tip before – it would have saved me a lot of painkillers and even more suffering.
Hello,
I'm male, 25 years old, and have been suffering from severe migraines for the past 5-6 years. Sometimes I get them 6 to 10 times a month. They're often very intense, accompanied by vomiting (especially if I've eaten something I'm allergic to), and on some days I just have a completely dull head. My grandmother, mother, and an aunt also suffered from migraines. Over the years, I've learned more and more about the triggers. My tips might be new to some of you and could be helpful. Keep your sleep schedule consistent, meaning don't sleep in longer than usual on weekends. Eat regular meals and definitely don't wait long to eat when your stomach is growling. Avoid MSG and processed foods. Alcohol and cigarettes are a no-go. Get plenty of fresh air, ideally take long walks every day. Japanese mint oil often helps me too. A lot of my migraines are also caused by tension in my neck. Various exercises can also be very helpful.
A truly valuable article! Being pressured by "well-meaning" advice is unbearable. The only solution is not to justify yourself:
"I don't want to hear any advice right now."
"If I feel I need advice, I'll ask for it."
"Please, no advice, I have a migraine."
And if someone still doesn't get it, just repeat it – once, twice, three times.
Then even the most thick-skinned person should understand.
All the best!
I've suffered from migraines since early childhood. My previous family doctor diagnosed them and prescribed various medications. I moved five years ago and still suffer from them. My current doctor says I don't have migraines and am just overly sensitive when I have headaches. :( She didn't even consider the reports from my old doctor. My boss said, "Have a baby and the migraines will go away." Let me tell you, forget that. During my pregnancy, I almost went crazy because you're not supposed to take medication, and my migraines were even worse. My gynecologist prescribed massages, which helped to some extent, and even after giving birth, the migraines didn't improve. I'm currently experiencing pain that I can manage with ibuprofen, turning into severe headaches, but that's no way to live. At least my partner tries to help, even if it's just by taking care of our little one after work.
Hello, I've also suffered from migraines for 30 years. It started when I was about 7 years old, so for as long as I can remember. Back then, people told me it would get better as an adult. I can only say it's gotten much worse. When I have an attack, I vomit several times, just lie in bed, and need rest while my head and neck feel like they're going to explode. Working is completely out of the question, let alone looking after my children. My parents already know what's going on when I say I have another migraine. Pills don't help me at all because I'm constantly vomiting. An attack lasts up to 16 hours. After that, it slowly subsides. I could write a book about all the places I've had migraines, and unfortunately, I'm also familiar with stupid comments like, "Just take a pill," or "Don't be such a baby," or "Don't exaggerate." Or, "You and your migraines are annoying..." Am I really the one who has to bear the brunt of it? I've been to doctors many times, but they didn't take me seriously. I've almost given up hope. I'll probably have to suffer like this for the rest of my life. War has an attack approximately once a month, sometimes twice…
Hello everyone, I also have migraines, which were diagnosed in the hospital. I'm one of the 3% who suffer from the rarest and most severe type of migraine. I carry several tablets with me, and when an attack starts, I first take Dolormin Migraine and then lie in a very hot bath to relax my neck muscles. So far, this has helped me quite a bit. After that, I go to bed in a dark room and sleep. There are also times when it doesn't help because I end up vomiting more, and I don't know what else might help besides the injection in my neck. I hope that new findings in the field of migraines will bring new and helpful treatments.
I'm spontaneously sending the author of this article about "non-advice" a giant virtual bouquet of flowers!!! I've had migraines for 22 years. Finally, someone has put it so perfectly. Not knowing whether to laugh or cry, I ended up smiling at the end. It's truly outrageous what kind of reactions you have to put up with on top of your suffering. And often it's the unspoken ones that are the problem.
Tritpane doesn't help me at all. But about 10 years ago, I discovered by chance that diclofenac helps. By chance and on my own, mind you. I've been telling every doctor what I have for 22 years, and all I get is trial and error regarding the symptoms. Nobody bothers to treat me consistently. Fortunately, with diclofenac, I can now manage acute attacks quite well (thank you! Thank you! ...after 12 years of having to endure it!). But now I have stomach problems, which are probably also a side effect of the diclofenac. The doctor's diagnosis: "You should be aware that every medication you take has side effects." 8-[ And besides, I should really take care of my mental health. While reading this, I feel myself getting angry –> Quote from a fellow commenter here: "Me (single), you (mother): As a mother, I can't afford that."
I am a mother of two, working, and a single parent. I can't even tell you the lengths I've gone to just to keep up a halfway decent role, because I simply had to. I wouldn't wish this on anyone, but when I think about how often I've discussed the next day's schedule between the 8th and 9th vomit, or spontaneously thrown up into a bag while driving on the four-lane A5 because I had to get home, couldn't pull over to the right, or there's no shoulder at the Frankfurt interchange, then you're tempted... We do all this voluntarily because we take ourselves too seriously.
All the best to you! :-)))
Everything's been said. I've suffered from migraines for 32 years and it's incredibly painful not being there for my family and for celebrations so often. Since I only work three days a week, I somehow usually manage to schedule my migraines for my days off. I have no idea why that is. I'm familiar with all those nonsensical tips and I suffer from the prejudices and am ashamed of being absent so often. Only someone who has experienced it themselves can truly understand what it means. Everyone else will never be able to comprehend it.
Hello fellow pain sufferers,
due to recent events, I feel compelled to write a short post today. I've had a migraine for three days. Yesterday (Sunday) it became unbearable, and my husband took me to the nearest emergency room. After waiting for about half an hour under glaring lights on a cot, a young doctor in training came and gave me an oxygen mask. He said this often helps, and if not, the refrigerator was full of "cocktails" (= medications – one of which would surely do the trick). I first received an IV with 1 gram of Novamin, but the pain persisted. Then I had another IV with 100 mg of aspirin. The pain improved slightly, but I knew (from years of experience) it would return… I was so annoyed that I refused to let them "experiment" with me any further and told them I was feeling fine. So we quickly went home and straight to bed. As a well-intentioned tip, the doctor present suggested I try black coffee with lemon (…scream…) and that a psychologist would also be very helpful (I shouldn't misunderstand this advice). And yes, I had another terrible migraine all night, which is now slowly getting better, otherwise I wouldn't be able to sit at my computer now and share my suffering and anger with you all… All the best to every migraine sufferer who reads this and has to suffer just as much and often feels like they're not being taken seriously… Yours, Hayka
Hi Pia,
I have the exact same problem as you... and I also only got a diagnosis of exclusion: migraine. That means I've been to all sorts of doctors and they've all ruled out anything else (orthopedist, ophthalmologist, dentist, ENT). The neurologist then said it was migraine because nothing else could be the cause.
Since you mentioned puberty, you're probably still a minor, which complicates things. Mine started when I was 15 and I wasn't taken seriously... the neurologist's best piece of advice was to rub peppermint oil on my forehead... that would help, he said, and maybe take a painkiller. I was furious...
Find a doctor who takes you seriously, get confirmation from all the doctors mentioned above that they can't find any other cause, and then go to a neurologist once you've seen everyone else. Maybe you'll get lucky and they'll recognize it.
I've had migraines for as long as I can remember, and the pain always started in my eyes. However, it got worse after a riding accident, and I've been to countless doctors. Every single one of them has blamed it on growth, the accident, my period, puberty, my muscles, or my spine. But now I have the feeling it's originating in my head. The problem is that when I take painkillers, the pain gets a little better, but afterward, I feel completely out of it, like I'm on drugs. My eyes still hurt, and my neck is still rock hard. Does anyone recognize this and have a solution? I'm starting to despair...
And how/which doctor can I find out if it's really originating in my head?
Reply to Kipris:
I have the exact same problem with noise in my apartment. I've now contacted the property management company and reduced my rent by 15%. According to the tenants' association, that's okay. And indeed, the property management company is now making an effort to teach the new tenants how to live there properly.
Keeping a noise log and writing letters was exhausting because of pain and other health issues, but things are changing.
So, maybe that's an option for you too?
I also suffer from migraines (basically, for as long as I can remember) and have heard several of the listed "tips." Luckily, my family understands and takes care of me when I have an attack. Unfortunately, these attacks are becoming more frequent, and I'm plagued by headaches almost constantly – sometimes mild, sometimes severe. Since I'm still a minor, doctors can't prescribe stronger migraine medication, so I have to deal with classic painkillers like Dolormin or Thomapyrin several times a week. But during very severe attacks, only dark rooms, rest, and sleep usually help. Until a few months ago, I felt misunderstood and alone, like many others, because I didn't know that so many people have to cope with this illness. Of course, one hopes that the pain will eventually lessen or even disappear, but in my opinion, and apparently also in the opinion of doctors, this is hardly possible. Nevertheless, I wish you all the best in enjoying your lives and somehow coping with the pain; we don't really have much choice!
My favorite sayings are:
“Migraine? You just need to drink a glass of cola, then it'll go away.”
“I used to get migraines too. But they've been gone since my pregnancy/menopause.”
Then I guess I'll drink a glass of cola and get pregnant – menopause could still be a while away…
Hello, my dears!
I just read the so-called advice and your posts with mixed feelings: laughter (or rather, a smirk) and tears. These lines sound all too familiar to me.
There are those “malicious” people who think they know better (but the main thing is to stay home even with “normal” headaches!!) – I try to ignore THEM as best as possible.
And then there are the people who are truly dear to me – and whom I know mean well and honestly – but after more than 10 years of chronic migraines, good intentions unfortunately don't translate into good results... sometimes I catch myself being annoyed by it, even though I'm sure they really want to help me.
I honestly find it difficult to deal with, as many people don't understand. If someone breaks their leg and shows up with a thick cast, people are considerate, but with THIS condition, I often feel like I'm not being taken seriously – even doctors have often had this experience.
Even though I truly wouldn't wish this pain on ANYONE in this world, I'm still glad not to be alone with it and I feel for each and every one of you!
sunny greetings
Hello, since I was 14 I've had 2-3 attacks a month.
Until I was 40, I always treated them with Novalgin, caffeine, Omeprazole, paracetamol, and ibuprofen.
Only since I started taking triptans have I been able to cope with real life, thank God.
Sometimes I wish all those people with their great advice would just experience one of these shitty attacks so they'd understand how knocked out we are by one.
But I also had to learn one thing – avoid triggers like irregular meals, too much coffee, or red wine…
There's nothing negative in my environment. I often go to work with migraines. Three times a year, I miss two days because of them. Right now, I'm changing my diet. Dairy products immediately trigger an attack, as do flavor enhancers and fatty foods. There's not much left to eat. But the fear of the pain keeps me going. It really started after the birth of my second child; now, after four years, I only get about one week pain-free per month. After changing my diet, I get two days of migraines coinciding with the start of my period, and one day around ovulation. Maybe it's helping. I don't even care anymore whether the food tastes good or not, as long as I don't get a migraine.
“You have to look closely; there’s a reason for everything. If you know what triggers your migraines, you’ll get better. Just go see a doctor.”
1. I’ve been looking closely for years. I’ve optimized a lot, and I’m slowly getting tired of it.
2. You can tell someone that the reason is genetics, or that “migraines aren’t a consequence of another illness, but rather their own condition,” but often the prejudice is too strong to gain new insights.
3. If I know a trigger, I can minimize migraines… Migraines can’t be completely cured… See the prejudice in point 2. I feel like Don Quixote…
4. Go see a doctor…? I’ve been telling doctors what’s going on in my head since I was a child! I usually know more about migraines and other headaches than I do!
Hi everyone.
Yes, I know all the sayings and the suffering. I admit that I "only" get a migraine once a year. But then it lasts for 1-2 weeks!
I also heard a comment from a doctor: "How... migraine in winter, plus tension. That's not in the book."
I don't know which book she meant. (A diary?) But it's strange that my old GP, the emergency room doctor, and my neurologist all diagnosed me with migraines.
If I didn't have migraines, the triptan wouldn't work. And it does.
Best wishes to all migraine sufferers.
I have chronic migraines, very often accompanied by aura and the whole nine yards. It's awful! And the attacks have been quite frequent. Now, at the beginning of January, a family with a child moved into the apartment below us, and I'm getting migraine attacks every few days. The child is about four or five years old, is NEVER outside, and seems to think the apartment is his gym. From about 7:30 a.m. until usually just before 8 p.m., the boy runs (gallops, no joke) all day long without any significant breaks (breaks usually last two to four minutes) through the apartment, jumping off the furniture in every room. He does all this barefoot. The people live below us, but the noise is unbearable. The parents aren't much better: they don't know what "nice room volume" means. The doors are constantly slammed, and everything is falling and clattering. We went there, explained the situation, and asked if there was any way to reduce the noise. We even offered to buy them slippers. (They claimed they didn't have the money and that the child had nothing to play with, so he runs around all day and nobody is willing to stop him or go outside.) We bought three pairs of slippers and took some of our 16-year-old son's old toys downstairs to the neighbors, like Hot Wheels with a playmat, a Nintendo Wii with games (which my son actually wanted to sell), Lego, and other toys. Do you think it's gotten any quieter? NOT AT ALL.
I'm just so disappointed and quite ill. I have the flu, which isn't completely gone yet, plus the constant migraines, and I can't find a quiet place at home. I can't drive when I have an attack because I can't see, and the medication isn't really helping anymore since I have to take it three or four times a week. The other day, I just got in my car when it was dark and lay there, because that's not possible at home. I've been on sick leave for over six months (due to another illness) and am always at home. Moving out isn't an option, because the apartment is great and the rest of the neighbors are just wonderful. Can anyone give me tips or advice on what we can do, because things can't go on like this.
I feel very close to all of you right now. Two and a half days of migraines are over, and for the past hour I've almost been myself again. I've just read through this article and the comments, and I don't feel so alone anymore. Migraines make you lonely. So does depression. I have both – depression for ages, migraines for four years. I had the depression somewhat under control, but with the migraines, they've returned with a force that leaves me baffled. Me – and the people I tell about it. Sooner or later, everyone withdraws. I can understand that. I usually withdraw myself before the other person does. Somehow, there's no one there anymore. But somehow I'm too weak to change that. Greetings to you all! And thank you!
I'm single and live alone. A company doctor once advised me to get rid of my migraines: "Get pregnant. You don't get migraines during pregnancy."
I find it appalling how completely thoughtless even doctors can be.
Hello,
I'm reading a lot of familiar things here. Nevertheless, I'd like to take this opportunity to thank everyone who understands our illness and supports us wherever they can. THANK YOU!
But I too would like to write a post about what I had to listen to:
I worked for a well-known computer company. After about a year, my migraines became increasingly severe, frequent, and longer-lasting due to various triggers. After about three months, I was called in for a performance review. During this meeting, I was told that if the job was too stressful for me and causing my migraines, I should reconsider whether it was the right job for me. Out of sheer protest, I endured another painful 1.5 years.
Since I started a new job, my migraines and I get along a bit better. They still drop by every now and then, but they don't stay longer than three days at a time, and we're both glad when we go our separate ways again.
Nothing more needs to be said. I, too, have had to listen to my fair share of insensitive and know-it-all "advice," especially from people who have no idea what migraines are. I've suffered from migraines for over 25 years. Only medication containing the active ingredient triptans makes my life bearable.
I've suffered from migraines since I was 14, and I could tell you a thing or two about "well-meaning" advice.
It's almost always about doctor recommendations, dietary tips (cut out alcohol, certain foods), exercise (which I do 3-4 times a week), Schüssler salts, and so on and so forth...
The best advice is always, "You just need to think positively!"
Thanks for these words... I had to share them right away for all the "advice-givers."
Dear Techniker team!
It would be great if you could add a few tips to the article on what to say to or do for migraine sufferers to make them feel supported.
It's often helpful to clearly communicate to family and friends how they should interact with you.
While this is naturally very individual, there are certainly tips for partners that are generally well-received by sufferers.
And: many companions of migraine sufferers will read this too!
Thank you and best regards!
AW
Brilliant statement, absolutely spot on! But I find it shocking how little people seem willing to understand. Especially immediate family members. During an attack, you can see how the person is feeling! Why is it so difficult to simply believe and help, instead of putting down migraine sufferers in any way possible?
Ute, January 10, 2016
I've been suffering from migraines for over 20 years. Initially, I didn't have such acute attacks, but since 2006 it's been diagnosed as chronic. Society and doctors simply don't take you seriously. As described in the individual accounts, you're treated like a hypochondriac, ostracized, and belittled with sarcastic remarks. It's not just the attacks that wear you down, but also the superficial treatment in everyday life. I'm grateful for the accounts of those affected and hope that people around them will become more aware of this illness.
Good day.
Yesterday I went to a clinic near me. I was out again after five minutes. They said there was nothing they could do for me. Beforehand, I filled out a questionnaire and then answered the doctor's questions. He classified my "triggers" as psychosomatic. They are indeed very specific. As soon as I open my eyes in the morning, I feel a cold sensation in my right eye. Previously, ordinary safety goggles were enough to provide my eyes with a comfortably warm, protective environment. Later, I needed completely sealed goggles that rested on my cheek with a rubber seal. But even those aren't enough outdoors anymore because the cold penetrates the lens and reaches my eye. Shortly afterward, I get stabbing pains behind my eye, which lead to a migraine an hour later. At home, I can pull a long beanie made of warm alaca wool diagonally over my right eye. The warmth from this makes the stabbing pain disappear immediately. If I miss this window, I get another migraine.
Now I come to psychosomatics. ;-) The other day I sat at the dentist for an hour without my safety glasses and without my alpaca hat. And lo and behold, no stings behind my eye, my head didn't get cold, everything was fine. I was distracted and my everyday problems faded into the background, at least for that hour. Hmm, maybe it really is my mind that's causing all this trouble, at least for me…
Greetings from the Sauerland region
"You just need to drink 2-3 liters of lukewarm water within 30 minutes. Then your migraine will stop. This is done successfully in traditional Chinese medicine." This advice came from a self-proclaimed health consultant. It's so sad how little this cruel illness is still taken seriously.
At this point, I wish all tormented migraine sufferers many attack-free Christmas days, a better New Year, and little "well-meaning advice."
I went to the hospital for the first time because of a massive, uncontrollable attack. I was asked if there were any general practitioners, waited five hours in the emergency room, and received an IV with Novalgin because they didn't have any triptans in the entire hospital?! Novalgin brought my blood pressure down, but the pain was still there. Then the doctor tried to get rid of me by telling me to go home and take my usual medication. She then tried to transfer me to another hospital, but they wouldn't admit me and advised me to have a CT scan of my head, give me Tramadol, and admit me. I did that, and... Meanwhile, the nurses told me how over the top it was, that it was probably just a pinched nerve, etc., etc. Tramadol, Novalgin, and the stay in a four-bed room didn't help. So the doctors came up with the idea that it might be a cluster headache and tried to treat me with oxygen… After two painful nights without sleep and many tears, I discharged myself… The doctor's report then stated: Suspected cluster headache, patient is tolerable, complaining, improvement after Tramadol and oxygen… Huh???
My “favorite comments”:
“You don’t stay home for a little headache” (when calling in sick).
“Work helps with migraines.”
“You’re lacking regular sex/masturbation.”
“You just need to figure out what the migraine is trying to tell you.”
“I (a mother to me, a single woman) can’t afford something like that!”
“There’s no point in inviting Uli, she won’t come anyway because of her migraine.”
“Just do some exercise” – from a neurologist while I was standing in front of her in my underwear. I’m very athletic and have a slim, toned body…
And you constantly hear that it's "something psychological" and that you're to blame. Some kind of wrong behavior, too sensitive, too responsible, too perfectionistic…
I too suffer more from the reactions to my illness (M. for over 35 years, long since chronic) than from the attacks themselves.
I'm 15 years old and have had migraines since the end of last year… I have to admit, before I was confronted with this issue myself, I probably would have made similar comments. You try to help, but without understanding the situation, you can only really say the wrong thing. I used to associate migraines with the stuck-up mother from the children's books "Pünktchen und Anton." Suddenly, it all became too much for her, and the oh-so-stressed woman got a migraine and was supposed to be left alone by everyone. It always sounded like a perfectly valid excuse to me… But when I experienced my first migraine attack, I was just ashamed of my past thoughts. I never again jumped to conclusions or judged something I knew nothing about. For me, it started off really badly. I had up to four attacks a month, each lasting about a week (have fun calculating the pain-free days). I was told so often at school and elsewhere, "Just take an ibuprofen and you'll see it'll be over in half an hour." I'm really not a violent person—quite the opposite—but in those moments, I just wanted to lash out. Nothing worked, from ibuprofen to paracetamol, Imigran, Formigran, and Novalgin. What was worse, though, was that I, still so young, was already suffering from this "old lady's disease," and no one my own age could possibly understand what I was going through. I was hospitalized several times and given drugs. But no one else understood. Even my teacher once said in front of the whole class that she was so annoyed she hadn't thought of such a simple way to skip school back then, and that she admired how clever I was for just saying I had a headache. That teacher made my fist clench even tighter inside my pocket. My parents and doctors, however, were very understanding and tried every possible method to help me. But when I was finally referred to a pain specialist, I felt like I was in heaven. He prescribed me a preventative medication that I still take successfully today. The attacks now only occur about once a month and can be stopped with ibuprofen and plenty of sleep. The pain specialist also boosted my self-confidence immensely by simply saying, "Please turn around, these are my patient files from the last two weeks for children and teenagers between the ages of three and eighteen." I could hardly believe my eyes. It was a huge stack of files upon files. Of course, it's a shame for the children who were also affected, but I am incredibly grateful to them. Since then, I know I'm not alone. I now know that it can happen to anyone, at any age, with any personality or lifestyle. Whether arrogant or shy, pushy or reserved. It can happen to anyone. It's not my fault.
Now, whenever I get a migraine attack, I'm no longer desperate, ignorant, and helpless. I no longer blame myself for the pain. Instead, I'm glad to know it will pass and that I'm not alone. Reading the comments from all the other people affected just now gave me even more courage. Because now I know not only that I'm not the only one, but also that I'm not the only one who can expect little understanding and compassion from others. Stupid comments are always out there. But it's not because outsiders want to harm you, but simply because they're ignorant. It's a shame, but true.
During my mother-and-child health retreat, the doctor explained to me that mustard helps her father-in-law with his migraines. Who needs medication then...?
A family doctor told me I needed to change my life. I was under too much stress. That's true. But I have absolutely no control over my father's cancer, the arson committed by a third party, or my child's serious illness. So I suggested I get a divorce, put the children up for adoption, quit my job, and apply for welfare. Those are the only things I can control. He didn't find that funny at all.
I know all about that. At my secondary school, they even accused me of having a drinking problem. The teacher said that anyone who could party could also write math tests. I shouldn't make such a fuss, other people come to school hungover too.
Hello!
I'm 15 years old and have had migraines for over two years. I also have migraine sufferers in my family (father, sister), so I expect understanding from them. I often have migraines for several days at a time. At school, though, I mostly just get strange looks.
If someone asks me what was wrong and I say, "I had a headache," the usual response is, "Yeah, a week of headaches, sure." And even when I say I have a migraine, people act like I'm skipping school and make comments like, "Migraines don't exist," "It can't be that bad," or similar things. People who don't have migraines just don't understand what those who do go through. I haven't had this problem for very long and I don't really understand it myself, but I'm very sensitive to factors like stress, and I can't handle any additional pressure from classmates, friends, or teachers.
I wish this topic could be explained, but probably no one would understand it or take my illness seriously.
Of course, it's also chocolate, ice cream, meat, vegetarian and vegan food, dieting, not dieting, chocolate-covered marshmallows, tap water, electromagnetic radiation, my cell phone, the computer, the television, too much/too little salt in food, fertilizer in Brussels sprouts, germs in potting soil... etc. etc.
I've already been to a naturopath; I'm one myself.
Note: I apologize for the poor grammar and spelling. I'm currently experiencing the after-effects of an aura.
I've had classic migraines for almost 20 years. In my youth, I had one attack a month, followed by a few years of respite. Since my 30th birthday, I've had 20 attacks a month. Sometimes it's just the aura, other times it's the full-blown pain, and no medication seems to help. I now take beta blockers and antidepressants preventively because the constant fear of the next attack has led to an anxiety disorder. I've heard all the advice mentioned above countless times. What's much worse, I believed it. The fact is, every day is a gamble. From one minute to the next, all your plans can be ruined. You have to think about how you're going to explain yourself at work or how you're going to get home to your bed. It's especially great when an attack happens in an unprotected space; I've spent some "wonderful" hours in supermarket parking lots because the aura made driving impossible. Finally, my boss once said something quite apt. If you survive a heart attack, you're a hero. If you have a minor migraine, you're a denier who takes themselves too seriously. This statement wasn't malicious, but rather tinged with a touch of pity because one feels helpless, even powerless, in the face of the illness.
As a woman, you also hear the comment that you are not capable or willing for sex/relationships/dates.
Finally, an article that describes everything we migraine sufferers have to go through. I often hear things like, "You can't drink anything today because you took a triptan?! Every time I go out on the weekend, I take two ibuprofen so I don't have a headache the next day and I can still drink." Often, comments like that make me not even want to go out anymore. There are people who seem to understand, but only migraine sufferers themselves can truly understand. Thank you so much for these frank facts, which I'd like to share with my friends on Facebook.
I've had migraines since I was six years old. I'm 39 now, and I've had to listen to practically every single item on this list, some of them multiple times, in my life.
Then there was the physiotherapist who claimed she could massage my migraines away. The result was that I went from having mild migraines to having extremely severe migraines after the treatment, to ones that even triptans couldn't really help with.
Or the dentist who said all I needed was a mouthguard, and that would make the migraines disappear.
And an (ex)boyfriend who told me I should take Q10, that it would help with migraines.
Not to mention all the teachers during my school and apprenticeship years who sent me outside for some fresh air instead of letting me go home to bed.
I hate it when people start throwing around clever advice like, "Don't eat this anymore," "Give up that," and "Don't take so many pills" (one triptan per attack is hardly much and helps me if I take it in time).
However, I've now reached the point where I don't expect any understanding and I immediately dismiss anyone who gives me strange advice. Perhaps I should actually print this out and hand it out to people when needed. I'm curious to see their dumbfounded looks!
It's frightening how accurate these statements are and what one has already heard, or rather, from whom!
I've often wished that the person in question would have my symptoms, just for an hour.
I think the article is good, but how should one deal with migraine patients…?
When I went to the neurologist at age 15, he told me not to make such a fuss, it'll all be over by age 50.
Those are truly fitting statements... but what's even worse is having to be insulted by people who don't know this pain. For example, I had to listen to someone telling me it wasn't a valid reason to miss work.
Thanks for the truly helpful comments, which non-migraines should really keep to themselves!
I've had migraines with aura for 39 years, but also another form without aura. In rare cases, I also experience speech difficulties. The attacks tend to strike when I have plans outside of work or even during an attack. My colleagues know nothing about it; at most, I become a bit calmer during an attack. You become a master at covering it up because these prejudices from those who don't know are still prevalent.
Once, during my school days, I couldn't finish a math test because I had a migraine attack in the middle of it and couldn't see anything due to the aura. The teacher just smiled and accused me of not having studied! I felt so small and helpless back then; I'll never forget it!
For a while, Petadolex (butterbur) helped me. It was banned in Germany at one point because it might have damaged a patient's liver.
I think it's been approved again now. It serves as a preventative measure, and it significantly reduced the frequency of my attacks.
I'm currently experiencing another attack. Since last Thursday, I've had five attacks with aura. It's really starting to take its toll!
I wish all those affected a time as free from suffering as possible.
I've had migraines since I was 14 – that's 35 years!! I've tried everything, and for the last two weeks I've been taking 12.5mg of methionine daily. The first week I had a migraine every day, and now I've been pain-free for seven days!!! But I've also gained two kilos, which of course can't continue :-)
Bedblocks only made me drowsy, Topiramate made me depressed and I lost three kilos. The attacks were between eight and ten times a month.
I'm very curious to see how things develop.
A question for Brigitte Prasse: Were you granted disability benefits due to migraines?
Does anyone else know more about this? I'd be very interested to know.
I wish all those affected continued strength and perseverance!
A few years ago, I had to see the company doctor. He was firmly convinced that you could easily work 8 hours a day with an acute migraine. This and other "clever" statements stem from ignorance. Okay, sometimes also from stupidity ;-)
I am 42 years old, have had migraines with aura for 20 years, nobody understands it, not even a neurologist, except the person affected. It's simply disgusting.
I've had to listen to just about everything imaginable... and I have to say, it seems to be getting worse and worse lately.
I'm 22 years old and have had one of the most severe forms of migraine since I was 8, complete with aura (eye area). My pediatrician at the time called me a malingerer. I dragged the migraines around with me until I was 19 and simply endured them as much as I could. Then I mustered up all my courage and went to a neurologist, who then referred me to the headache center at the University Hospital in Essen. After a 2-3 hour examination by several doctors and physiotherapists, I received the diagnosis: migraine with aura (29-30 days a month of pain that can't be relieved even by the strongest medications). Now I'm desperately searching for another way to alleviate this pain.
I'm 14 and because of my migraines, I can only go to school part-time. I read that migraines are supposed to peak around age 35, and that you can't work for several weeks after that. What am I supposed to do? I mean, I'm 14 and I can't even go to school properly anymore! I'm going to see a doctor tomorrow, though. What I don't like is that at home, my mother doesn't understand at all when I don't get up until around 1 p.m. because I've had a migraine all morning. She said I could still get up earlier. This makes me sad because I don't feel understood at all, and it's affecting our mother-daughter relationship...
But what I read above helped.
Thank you!
When my migraines started 15 years ago, I didn't have a diagnosis. At first, it was just the one-sided pain that no normal painkiller could help with, and which I could barely swallow anyway because of the nausea.
My family doctor's comment:
“Well, if I say now that they have migraines, then they will always be dependent on medication in the future, and I don’t want that.”.
It was as if her words conjured up migraines.
As a result, I endured every attack for years without medication. It wasn't even enough to warrant a referral to a neurologist.
I suffer from migraines with aura. After I turned forty, I was free of them for seventeen (!!) years, but now they've returned. Despite taking beta-blockers, the attacks keep coming. It seems nothing can stop them; I'm desperate. I'll have to increase the dose of beta-blockers even though they cause side effects.
But all the comments today were helpful.
Since my family doctor doesn't take me seriously, I buy my pills at the pharmacy, like many others. When I saw a neurologist today, all I got was, "Well, they're not very strong." She wasn't the least bit interested that I sometimes have to take up to 10 pills just to get by. All she asked was, "Why do you drink warm water when you take the pills?" or "Oh, you just feel like vomiting? Well, that's not typical at all." "How come you have pain on both sides?" she asked. "No, not typical." She looked at me in utter disbelief. "It's as if thousands of little men are digging around in my brain, and I've gotten a few punched in the eyes because the pressure is so intense and I can barely see." "The only thing that helps is movement and relaxation exercises," she said. During these attacks, I'm glad to be lying in bed and have some peace and quiet. But actually, all I could do is sit and cry
Bullseye!!! I've heard all these "tips" before. It's really annoying, but unfortunately, people don't get it. I've suffered from migraines for 26 years and can't get rid of them. During acute attacks, I'm bedridden and unresponsive for 2-4 days, often wondering why I'm even still alive… Planning anything, making a firm appointment – forget it, I'm sure many of you can relate. And of course, that's exactly when I'm laid up. I even received an anonymous message once accusing me of faking my illness. If I could just give that person an hour of migraine, so they'd know what a migraine really means…
Wow – I'm sitting here reading all the comments and crying – like so many others here, I've been through the same thing so many times. Enduring the great advice, the super tips, the numerous suggestions from "non-migraines," constantly having to explain myself, wanting to counter the same old stereotypes – it's simply exhausting.
The lines from the quoted poem are so true, and I sincerely hope you all retain this advantage!
Quote: "One who has the advantage of appreciating healthy days more
than those who 'always' have healthy days."
Ha! I also had a bad attack once. I called the deputy manager, and he said it couldn't be that serious and that I should come to work!
Okay, since he didn't believe me anyway, I went. When I got there (I was a sales assistant), I sat at the till. Five minutes later, the till was covered in vomit, and I had to go to the doctor immediately. From then on, he believed me ;-) because he also got a really nasty phone call from the doctor.
A nurse advised me to have more sex; that made her migraine-free. A pediatrician advised me to go swimming during an acute attack. One should compile a table of oddities, especially doctors' advice, which reflects the doctors' lack of knowledge.
A neurologist once said to me, after my migraines hadn't improved despite beta-blockers and attempts to prevent them with topiramate… “Well, what more do you want from me? You can get your triptans from your family doctor anyway.”
I also suffer from migraines. It's absolutely agonizing; not even medication helps me. What I used to hear, and still hear, is: "Drinking lots of water helps!"
I'll say one thing: it would be nice if it were that simple. Mine throbs so intensely that even swallowing makes my head feel like it's going to explode. And besides, I drink enough. I'm starting a diary now.
Finally!
It's not just the migraine that completely knocks you out, but also the resulting psychological pressure of constantly having to justify yourself—I find that even worse now than the migraine itself. No one believes your pain, no one knows what it's like to be in pain for hours on end; your days are ruined…
My supervisor knows about my constant visits to various doctors, and yet she keeps saying things like: "Are you sure it's not a tension headache?" or "Maybe it's hormonal?" I've now been granted a 40% disability rating, and yet she still says things (during a migraine attack at work) like: "Why don't you go for a walk?" or "Don't drive to work, take the train"—as if that would be less irritating.
Thank you so much for this great post.
It's unbelievable what one has to, can, and is allowed to listen to.
I had to go to the hospital once and was given very strong antibiotics, and as a side effect, of course, I got a migraine.
I told the doctor that I'd been a migraine sufferer for years and needed a painkiller (my own triptan, or any painkiller she could give me). She then said, "I'll give you one paracetamol; that will definitely help." Of course, it didn't work.
The nurse's comment was, "You should consider whether you're addicted if even a paracetamol doesn't help with your headache."
My point that I didn't have a headache but a migraine was dismissed with a weary smile.
But, and I have to mention this, my roommate got incredibly upset about it! Every time the nurse or the doctor entered the room, she complained about such unprofessional treatment. She really stood up for me, and that actually helped me a lot.
My former boss once said to me, when I had a severe migraine, "I thought you only got migraines in the summer." I was speechless and stunned!
I know how you feel; I also suffer from migraines in connection with severe burnout. It's really not easy, especially with a toddler. Because of this, I had to give up my job and was under neurological treatment, which I still am today. But my boss was very understanding, as were my colleagues and friends, which I really appreciated. Thankfully, I haven't had any negative experiences related to the illness.
Have you tried this or that? No? Then the pain can't be that bad!
I was speechless!
After examining me regarding a transfer due to my migraines, the company doctor said the following: "Oh, you're having thyroid surgery soon? Well, then everything is irrelevant; you won't have migraines anymore and can keep your job as normal.".
That was in 2013…nothing has changed since then. Which is inexplicable to the company doctor from “back then”.
I had another terrible attack last night. After suffering through the warning signs for half the day at work!
I stumbled across this site by chance and it really brought tears to my eyes! No one knows what kind of pain this is unless they suffer from migraines themselves!!! THANK YOU for this site and for making me feel less alone in my experiences at work!!! Does anyone here have any ideas on how to respond when I have to listen to stupid comments after calling in sick?
I don't find the first piece of advice all that unreasonable, provided it's taken seriously and not just casually. I myself suffer severely from migraines, I'm a doctor, and I constantly have to remind myself to look at where too much stress is accumulating in my life. It happens slowly and insidiously, and it's usually many small things, but many small things add up. The brain simply becomes overloaded. I think there's a lot you can do to reduce the frequency of attacks in this regard.
I've already heard all the advice and recommendations from doctors and even followed some of them, for example, years of psychotherapy – everyone has some skeletons in their closet, right? :-) Luckily, I have wonderful friends who don't make any stupid comments but are very understanding of my situation. After a two-year struggle, I've been retired since the beginning of 2015. So I don't have to worry about my job situation anymore.
Despite having a terrible migraine attack, I was still in the office, and my colleague, enveloped in a cloud of perfume, said quite venomously: "You've got it easy, you only have a migraine… I have a cold sore on my lip – you can't even kiss with that…"
A lifetime of headaches at most – then the horror of migraines struck me suddenly, overnight. After a day I couldn't make it to work and stayed home – back at work. My colleague's exact words: "It's your headache, what do I care about it?".
I still have some:
It can't be that you're always in pain on the weekends!
or
If you stopped constantly sticking your finger down your throat, you wouldn't have to throw up all the time!
…the gist of all this good advice…
if you can't get your migraines under control, it's your own fault…
It's not just the illness, the attacks… the suffering that's bad…
the social status of this disease is also burdensome and painful
…
— it's similar to obesity… or addictions…
You can't get rid of the label... It's your own fault – it's not that easy!!!
Dear Iris,
We've taken your important suggestion on board and are now discussing it in our Headbook at http://www.headbook.me . You're warmly invited to participate, read along, or whatever you like. Feel free to drop by; here's the direct link to the relevant subforum: http://www.headbook.me/groups/migrane-vorbeugung-durch-verhalten/forum/topic/was-man-menschen-mit-migraene-sagen-sollte/#post-98872
Best regards,
Bettina
I find the attacks as exhausting as a first birth—my whole body is working at peak performance and is suffering. Afterwards, I'm just as drained and blissful, only the reward is missing—no present (child ;))—only the fear of the next attack is there
Thank you for this article, I will print it out and carry a small copy with me.
For years I couldn't get triptans and swallowed masses of strong painkillers, which didn't make it stop! Even with triptans, I can only suppress my migraines for a maximum of 4-6 hours. They always last three full days in a row, plus the mood swings beforehand and the exhaustion afterward.
Nevertheless, one functions despite this illness, not least to avoid losing one's job. I can't be absent every month because I always have a migraine before, during, or after my period for three days straight.
A human resources manager once said I was probably under too much stress again. That doesn't help anyone, because it sounds like you haven't been taking good enough care of yourself…
I even had my homocysteine levels checked because my husband read that this could also be a cause. I tried, among other things, Indian medicine, acupuncture, and of course I know everything in the article. Orthopedics (you probably need orthotics so you don't tense up...; oh, a vertebra has slipped out of place, we'll realign it, then the pain will go away...), I was put on an IV drip as an outpatient with the words, "This will work for at least 24 hours." What remained was a bad feeling, even though the effects wore off four hours after the treatment, and I thought I wasn't normal. I didn't want to go back to the doctor's office; after all, the effects were supposed to last longer..
The low level of acceptance in our society when someone doesn't want to drink alcohol, no matter how great the occasion... "It's just this once, nothing will happen," etc. ... The ridicule when you explain that alcohol triggers migraines..
My last severe attack occurred alongside my flu. My family doctor said the flu infection had most likely triggered the migraine… I became panicky about my condition, explained the situation to the emergency room doctor, and said that the triptan wasn't helping. They then recommended I simply take another 1000 mg of ibuprofen afterward.
I live near Kiel and would very much like to come to your clinic!
What should/can you say to people with migraines?
I would be delighted to read a post like this. A friend of mine has suffered from migraines for years, and she also shared this link. It's becoming increasingly difficult for me to find the right words so I don't say the wrong thing. I hardly say anything anymore, but I also don't want to seem indifferent or rude.
After all, I know she suffers from unbearable migraine attacks.
Thank you so much for this article, I'm crying because I see myself reflected in some of the comments!!
I've suffered from migraines with aura and neurological symptoms for 36 years.
A psychotherapist also recommended more sex, and when I applied for rehabilitation, they told me I wasn't sick often enough because, like a "stupid" person, I even drag myself to work blindfolded when the aura hits me just before I leave.
I'm so fed up! For the last five years, the attacks have been getting more frequent, so that sometimes I have one or two attacks every day for 14 days. They often hit me at night, and then I can't counteract them with Novalgin…
I'm in the process of applying for a disability rating, which I'll then wear around my neck!!!!!
My neurologist said it's normal with migraines to have attacks for 5-7 days in a row.
While researching headaches and migraines, I came across the Kiel Pain Clinic. It's wonderful how you handle this issue. How often are children told, "Don't be such a baby," plus all the comments you mentioned... I experienced it myself, and decades later, so did my daughter. We're practically a headache family ;-))) That's why I'm so interested in finding ways to get rid of headaches, and they do exist! Best of luck with your work and warm greetings from the south!
Migraine sufferers? Of course!
I am a migraine sufferer;
a fighter,
a survivor,
someone who has the advantage of appreciating healthy days more
than those who "always" have healthy days,
someone who has had reason
to delve into the subject of health,
someone who likes to have fun without alcohol,
someone who nevertheless spat next to the "A-Team,"
someone who has had diverse life experiences,
an incorrigible optimist who always believes
that every day will be a good day,
an enthusiastic madman
who is occasionally forced to slow down,
a persistent type who will not give up his fight for well-being
until his deathbed.
Yes, I am, my soul, a migraine sufferer
, and I am proud of everything I have done
to feel better.
I am a fighter.
Don't come here and tell me
that I am affected and that I am suffering!
I don't want you to see misery
when you look at me.
I suffer from migraines,
and yet
so much
more
.
Åsa Stenström
(own translation from Swedish)
It's great that those affected are talking openly about it. Migraine is a devastating illness that turns your whole life, including your family, upside down; nothing is ever the same again, and probably never will be.
We, too, have to listen to stupid comments from ignorant people: "Try this," "Do that."
My son was a lively little boy who always had migraines, but only once a month. For over a year now, he's had migraines almost every day. We've tried all the usual remedies, undergone every test, and sometimes the side effects of the medication made him even sicker. Now we're pinning all our hopes on a migraine clinic, where there's certainly no miracle cure, but at least some improvement. I wish all migraine sufferers the best of luck. Don't give up, don't let yourselves be insulted, and hang in there so that maybe one day, instead of flying to the moon, we can find relief from this cruel disease.
A doctor told me that migraines are psychological and wanted to refer me to a psychologist.
A friend of mine said the same thing.
Today we know that migraine is a neurological disease.
My husband, who is a doctor himself (surgeon), commented that he couldn't deal with hysterical women when I was in the middle of a migraine attack.
To all those who don't believe me, I wish they'd experience just one attack, so they'd realize how powerless you feel and that "the pill" you're supposed to take usually doesn't help. Even if you're not completely well for days, you still go to work. Many of the know-it-alls probably wouldn't do that either. Many don't realize how resilient we sufferers are, even if no one believes we're really suffering!
Have children, then you won't have time for migraines anymore.
Hello everyone,
my daughter, now 12 years old, has been suffering from headaches for almost 7 years. I would say they started out harmlessly, once a month, but since she started menstruating in January of this year, they've been daily, accompanied by dizziness, stomach aches, sensitivity to light and noise, and she just feels exhausted. So far, all we've heard are comments like "it's stress-related, psychosomatic," and we can't stand hearing that anymore. None of the doctors take it seriously. My child is suffering terribly. In January, we have an appointment at the university hospital's children's headache clinic, our great hope. As her mother, I cry a lot because I can't help her. It's not good :-(((
I also have a few comments to add:
“What happened in your childhood that made you develop migraines to get attention?” (Direct quote from a doctor during rehabilitation)
“You’ve been working towards your disability pension for years, you’ve been planning this for a long time!” (Direct quote from the rehabilitation clinic as above, but from the head physician)
After pointing out to my family doctor that migraines are not a psychosomatic illness, his reaction was an eye roll, looking at the computer and saying, "Well, that's what YOU might think."
“Have you tried aspirin? Well, if that doesn’t work, then feel free to take two!” (I was taking eight aspirins a day at the time because nobody had told me about triptans.) (She was a gynecologist.)
“You’re just getting worked up about it!” (Ex-husband)
“Migraine? Never heard of it, what is it?” I’ve heard that before, wow.
“Headache? Children don’t get headaches!” (old people who were surprised when I already had migraines at age 5)
And many more comments… plus the ones mentioned above…
Since the age of four, I've had migraines associated with joyful occasions (Christmas, birthdays, holidays). The doctors I consulted said it would go away with puberty.
During puberty, my period triggered monthly migraines for about four to five days. The doctors again said it would stop once puberty was over.
From the age of 20, my migraines were also triggered by ovulation, affecting one side for about three days each time, and then the other side. Twice a month, I had five to seven days of migraines—one good week and one bad week.
The doctors suggested pregnancy could be the solution.
During pregnancy, I experienced completely uncontrolled, severe migraines with little respite. After giving birth, my migraines returned to their "normal" pattern.
After a total hysterectomy at age 48, I had no pattern at all, experiencing three to five days of migraines, followed by about three days completely symptom-free, etc., while on hormone replacement therapy. Unfortunately, hormones are absolutely essential, because then the triptans are no longer effective against the severity of the attacks.
I am very familiar with the entire list above!
The almost complete loss of quality of life, the unbearable physical suffering, and the desperate efforts to manage my workload (household, child, job) during attack-free periods often made me consider suicide, especially during the time before I started taking triptans (until 1992).
For the past five years, I have been receiving a partial disability pension. My former family doctor told me that I wouldn't be granted a pension for migraines; I would have to be much sicker. Thankfully, I didn't let him intimidate me and applied – successfully. I also received a disability rating of 30%. I now have more time to live, especially since my son is also grown up and therefore has the opportunity to do something enjoyable again, as long as I abstain from alcohol (a glass of wine with a good meal would sometimes be nice :-( and maintain a regular day-night rhythm).
Dear Team,
your article hits the nail on the head. Since childhood, I've heard this and similar advice, and I probably don't always react very politely these days. Anyone who knows this kind of pain has already thoroughly explored all possible ways to alleviate it. It's nice to read that we're always given the same well-intentioned tips. The latest trend seems to be veganism, which everyone is recommending to me, but thanks... I don't want a recipe for vegan Bolognese sauce :-))
Thank you for this article;
I've heard it all before, and even more: "You're taking too many pills!" "You look fine, it can't be that bad" (comments from colleagues). Even my (now former) family doctor said: "I also often have migraines and am depressed, but I still have to work. Surely Mr. Purmann could pull himself together." (Reason for changing doctors)
I work as a carpenter, so heavy lifting, machine noise, driving a van...
It took many years for my colleagues to even begin to understand the seriousness of the situation.
Now, with a 50% disability rating, over a year of constant headaches plus 10-15 migraine days per month, sick leave since July 2014, and advice from a neurologist to apply for disability benefits, my colleagues see that there's something to it after all.
To all migraine sufferers: We are not malingerers! We are fighters!
Hello everyone, I'm 54 years old and have suffered from severe migraines since I was 16.
For many years, I didn't even know it was migraine.
I went to many doctors, often had emergency doctors at my house on weekends, received injections, and was back to normal on Monday. One doctor even called me a malingerer, so I often stayed silent and retreated to bed. Even during my pregnancies, I wasn't spared. I couldn't participate in many celebrations... I spent so many days and nights in bed, constantly swallowing pills, until a neurologist prescribed triptans about 10 years ago. Now I'm dependent on these pills and have migraine attacks almost daily, mostly at night.
Sometimes I get depressed because I just can't take it anymore. Perhaps I can go to this clinic; that's my great hope.
Warm regards to Kiel
, Britta Wollesen
Thank you Prof. Göbel for this successful and encouraging article.
I've heard the phrase "You just have to let go" quite a few times. It even came from a doctor whose treatment methods weren't working. I followed her advice and never went back there.
Yes, I know that one. Plenty of times. The best was, “Why don’t you go for a walk by the lake and watch the little ducklings… or the swans…” Things like that make me sad, but sometimes they just make me angry. When I’m in pain, I couldn’t care less about those stupid birds, and sometimes comments like these make me think of my slap tree.
I'm 14 and currently at a health resort, and I constantly have migraines. It's really annoying. The staff think I'm just saying I don't want to participate. That's how it is, the crap works. Will migraines go away when I get older?
The worst thing for me is that no one takes me seriously, not even my daughters… it's all psychosomatic…
Yes, I've heard all that before. What I found particularly annoying were those overly clever comments from experts.
One psychologist even said... that a migraine is like an orgasm in your head...
I was cynically quick-witted at that moment—what a fantastic orgasmic experience with up to 10 migraines a month over 34 years—WOW!
Keep up the good work in Kiel!!!! I was there, and the understanding I received, along with my growing understanding of the connections and acceptance of my illness, helped me a lot. Thank you!
Thank you so much for this wonderful and insightful article. I feel exactly the same way. I feel completely misunderstood by those around me and not taken seriously by the doctors.
This article should be displayed on the wall of every doctor's office.
Dear Professor Göbel,
It's great that you've listed them like this! I've had severe migraines since I was six (that's 39 years!) and I've heard all these comments before – many of them more than once!
The worst part is that at first you listen to these great tips… later on, it just gets on your nerves, and you have to carefully and gently explain to people why you're not immediately following their advice – otherwise, they get offended, and then it's your own fault if you continue to suffer. So, I've gotten into the habit of always replying that I've already tried all of that, and unfortunately, it hasn't helped.
Please continue your research and publications! Thank you!
I've had migraines since I was 27. Someone who hasn't had them can't understand.
I still suffer from them today. I'm 62 and still have them. I've never been to a
pain clinic. I'm just labeled as having a mental illness.
The comments I get are pretty harsh. I suffer from migraine attacks, but without headaches. I have all the other symptoms. My doctor explained that migraine is a condition and that pain is just one of many symptoms. I simply don't have that one symptom. That's why I constantly hear that I don't actually have migraines.
I can only confirm that many people think migraines aren't so bad. I've had them for 25 years, and I only realized they were also related to female hormones when I had a fibroid in my uterus. For four years I had irregular bleeding, accompanied by migraine attacks every time.
After the surgery, the migraine attacks subsided. I'm 53 now; mine started nonspecifically during my first pregnancy.
The migraines developed very gradually. I still get attacks today. I recently read that I might also be at risk of a stroke, which is why I'm thinking of looking for a pain/migraine specialist here in the Ortenau district.
Regards, Regina
@Pia: Be happy for your daughter! I was migraine-free during both of my pregnancies and the subsequent breastfeeding period. Afterwards, the migraines returned…
I keep hearing: You just need to drink more water.
I can hardly stand to hear other people's well-meaning advice anymore. I've suffered from
severe migraines for 45 years, 8-10 attacks a month, and sometimes I just don't want to live anymore. I'm such a fun-loving person, but I can't do anything—no glass of wine, no going to bed after midnight, no loud music, not even laugh too much, otherwise I end up in bed for three days straight with loads of
triptans. What kind of quality of life is that? If I were sure I'd only
get them occasionally, I'd jump at the chance to have surgery.
Regards, Leonie Hansen
Thank you so much for this incredibly precise list!
I couldn't believe that anyone actually understood this illness. You constantly have to explain yourself and apologize.
Among the very common pieces of advice I get is: "And have you tried that amazing oil from Canada or the magnetic bracelet from Turkey?" This ties in with your point number 6 about hobbies. You wouldn't hang an amulet around the neck of someone with, say, pneumonia to cure it.
It's a nasty illness, difficult for outsiders to recognize, that truly brings you to your knees.
Greetings to Kiel
A pharmacist once recommended nasal spray to me, because often it's just the nose that's blocked.
I recently heard from my family doctor: You need to calm down!
Many, many thanks, Professor Dr. Göbel, for your empathetic article. You are the only doctor who portrays these afflictions as they truly are. That's so helpful! As a chronic migraine sufferer, I've had to defend myself for decades, even though I've explored every possible treatment option.
Perhaps you could add the point, "Migraines disappear after menopause." Unfortunately, that's not true either.
I wish all sufferers many pain-free hours and once again, many thanks to the clinic in Kiel.
In the 1970s, I was told at a large city hospital: "You're a killer of leading figures," because after six months of treatment by the professor there, my migraines hadn't improved. I questioned his professional competence completely.
Pfffff… That was my family doctor's reaction to my intention to apply for a disability rating. Later, I was immediately granted 50%. The report was written by my neurologist.
Unfortunately, it's all true. I also find it unfair that you're taking too many medications! Although, according to the information on this site, I'm thankfully far from having medication-induced headaches.
Migraines seem to be a burden on those around me (unfortunately, including my husband), which in turn burdens me.
The statement, "Migraine is an independent neurological disorder!" is very comforting. I would give anything to be able to see a doctor in Kiel. It's just so far away!
But I'm very grateful for the app, the "triptan threshold," and the lists and information!
I don't have a headache, but I do have similar back pain and I'm all too familiar with these "tips." Thank you for this article. I imagine it could have saved me many years of the strangest therapies. Perhaps there is a way for me to get into Professor Dr. Göbel's pain clinic after all.
Hello everyone!
Thank you for this article, it is very relevant and helpful for me as someone affected.
I'll show it to my friend. I regularly hear her say, "Things have to get better with YOU!"
Warm regards,
Gitte
The following conversation: How are you? How are your depressions? / I don't have depression, I have migraines! / Oh, just migraines!?... Have you been to a homeopath yet?
The worst part is that stupid statements of this kind about migraines or other forms of headaches come not only from laypeople, but even from established doctors.
All very true words from the professor; I've heard them far too often in my 42 years of migraine practice!
But I have a "well-intentioned piece of advice" to add—migraines go away during sex!
With that in mind, best regards to Kiel.
Finally, someone who understands us sufferers! I've been suffering under these circumstances for many years, and I'm going to a pain clinic soon, hoping they can help me. Thank you for your openness!
Thank you so much. Everything is so true. The comments/well-intentioned tips/questions as well as the explanations.
Have you been to an osteopath yet?
Your head is not properly positioned on your spine.
Stop working! (I love my job! It's my dream!)
Having a dog helps with migraines because it forces you to go outside. (We now have two dogs, but the migraines haven't gone away!)
That was the recommendation of a physiotherapist during the spa treatment.
Those were some of the tips I received
You need to eat more potatoes. You're very acidic.
Take homeopathic remedies! Please take homeopathic remedies!
I've been living with migraines for about 16 years now, and I know those phrases all too well! I'm going to a headache clinic soon and hope they can help me. I've heard a lot of good things about it. I think people who've never experienced such pain simply can't imagine it, and that's why they say things like that.
Thank you so much for this article.
It would be wonderful if the Integration Office would recognize this in the same way and assign a disability rating.
I myself have suffered from migraines since I was 14, which is now more than thirty years.
While migraines were listed among my other limitations (spine and knee), they weren't assigned their own percentage points. Even though, given the frequency of the attacks, it's easy to calculate how much of one's life is lost. And that's not even considering the comments from my "dear" colleagues... with recognition based on percentages, the acceptance of this condition would be significantly higher. Perhaps migraines will achieve this acceptance in a few years... when more doctors engage intensively with this topic and it receives the attention it deserves in medical school.
Keep up the good work, Professor Göbel.
My migraines have improved significantly since I started paying attention to my diet. The connection to my gallbladder is definitely undeniable, as I react to fatty foods with severe migraines. Since I've been focusing on my diet and my gallbladder, I've gone from weekly attacks to one or two a month. Otherwise, these are exactly the kinds of things you usually hear about migraine sufferers!
@Lina
Yes, exactly the salts. And yes, the bile.
As if one weren't doing everything possible to prevent even the slightest attack.
Almost as if it were one's own fault.
It explains a lot and may be helpful in clearing up some misunderstandings.
The biggest misconception: Migraines are not “JUST” headaches!
Many people don't understand that it's not something that can be fixed with a pill. After all, it's not just a "hangover".
Everyday life has to be adapted to the migraine.
– Diet
– Rest/sleep times
– abstaining from certain sports
– abstaining from social activities (celebrations, going out
…) (all this and more during relatively pain-free periods)
. During an attack, time slips away.
Time you would rather have for your family.
Unfortunately, you often have to "explain" and "apologize" for your migraines.
Because they aren't "just" headaches.
You can't tell at first glance that someone has this disability. It's not as obvious as with someone who's missing a limb.
But it's indescribable pain and a daily burden.
The advice “suggestion” in point 11 was even given to me by a public health officer of the city of Frankfurt am Main, coupled with the accusation that I had already resigned myself to my illness and was therefore not at all interested in a cure.
Incidentally, thank you very much for the very accurate summary. I feel very well understood.
I have never given my daughter such stupid advice; I know about migraines from my colleague, so I know how to deal with her, but the strange thing is that since my sweet grandson has been here, I have never heard of her having migraine attacks again.
Thank you for these kind words, I felt very understood. As someone who has been affected for many years, I would like to add a few helpful tips:
Why not try some homeopathic remedies, Schüssler salts, or Bach flower remedies?
Do you always have to take all those chemicals?
Drink more water; headaches almost always come from dehydration!
Migraines originate in the gallbladder; your diet isn't right.
Stop partying so much and go to bed earlier!
Migraines come exclusively from the neck! Do something about it, and you'll be rid of the pain!
There's something wrong with your mindset; you're always so negative.
I can only agree with Christina regarding the diagnosis of "cluster headache". What all did I have to listen to before I received the correct diagnosis from Prof. Dr. Göbel?.
Thank you!!! It's so easy to be labeled a malingerer!
Great! I think I've heard every single one of these "tips" at least once before.
It would be great if this article could be posted directly to Facebook
Fantastic! Could this also be applied to cluster patients? How tempting it would be to rub that in the faces of everyone around you…
Dear Professor Göbel,
Thank you so much for stating these facts so frankly and publicly. It would be wonderful if everyone around you, both personal and professional, would handle this issue with appropriate sensitivity. Warm regards to Kiel!
Thank you, thank you, thank you!!! Finally, someone has said it perfectly.