1. Try to reduce the stress in your life.
Migraines are a neurological disease and are not caused by a stressful life. Certainly excessive stress can be a trigger, but it is never the cause of migraines.
2. You look really good, not sick at all.
Most of those affected do not notice the disease unless they are caught in an acute attack. A statement like that offends, so it's better to avoid this “compliment”.
3. It can't be that bad, I also have a headache sometimes.
Migraine, especially chronic migraine, is not a simple headache, but one of the worst pain conditions that afflict people. It is one of the most serious disabilities, especially for women. So it's not just the typical one-sided, stabbing, throbbing, pulsating headaches - no, the entire body is affected. Sometimes the attack begins with aura symptoms, and you also suffer from nausea and/or vomiting, dizziness, exhaustion, and hypersensitivity 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 sports can have a prophylactic effect and are often practiced during pain-free times. Exercise is not possible during an attack. Many are bedridden and feel seriously ill. In addition, chronically affected people hardly have pain-free times to do regular exercise.
5. Recently I read about a therapy that can cure migraines. My neighbor's sister-in-law successfully did the "xxx diet" for migraines. Have you tried xxx yet?
Tips of this kind are well-intentioned, but are more of a nuisance for those affected than helpful. You are usually very well informed about your own illness and have endured all the alternative attempts in the past, only losing 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 complaints, but it can neither prevent attacks nor make them easier to endure.
7. Take a pill!
If only it were that easy. Of course, the attack will be treated, but usually there is not just the pain, but other severely disabling conditions as described above. In addition, not every tablet works reliably and sufficiently well, and it is usually not enough with a single tablet. What is also overlooked by those who are not affected is that those affected by the chronic form of the disease in particular have to take several medications every day for prophylaxis.
8. Migraine is a women's disease.
It is true that more women are affected by migraines than men because of the hormonal triggers. Apart from that, this genetic neurological pain disorder affects both women and men.
9. Migraines are psychological, the illness is trying to tell you something.
Migraine is a primary disease in its own right and is never a symptom of another disease! Those affected are neither unwilling to work, mentally ill nor are they looking for attention. They just expect not to be discriminated against by prejudices of this kind.
10. You probably cannot tolerate a food. Have you already been to a naturopath? You have to remove the toxins from your body, purify, deacidify, and avoid carbohydrates.
Migraine is an independent neurological disease that is not caused by allergies. There is also no poisoning in the body, nothing needs to be eliminated, purified or deacidified. Diets are ineffective. What is more important is a wholesome mixed diet that should contain enough carbohydrates. The brain can best and quickly get the 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.
These or similar tips and questions do not help anyone affected. They make you sad, isolate and discriminate.
Have you ever heard advice like this?
Do you know more? Feel free to add in the comments… tips based on The Migraine Dirty Dozen
“Don’t act like that, I have a headache too” “Don’t look so angry, don’t let the migraine spoil your mood” and when that’s coupled with depression I hate the saying “Have you taken your tablets too? ”
This unempathetic nature is what you would expect from enemies, but not from friends or family
Nobody should take advantage of this (unfortunately the contrast here when writing is very thin! You can hardly read it, it's tiring and then gives you a headache.) Why is the writing so terribly light?
What I'm really trying to say is that no one should take the right to give "GOOD" advice to someone who doesn't know anything about migraines.
It started when my sister said: O Ton: you have 3 children... it's your own fault that you get headaches.
She 4 years older without a husband without children; Of course I know exactly.
When I once sent her a card from the pain clinic, her response was: I didn't even know that you had migraines! So much for your knowledge!
My father was of the opinion: I have to talk to your husband - he should really relax... no, I won't write about that here!
I recently had an attack in the middle of school and the response was:
“You just want to go home again”,
“Just drink water”,
“She’s just playing, it’s not that bad”,
“Have you eaten anything today”.
It has to be said that I have had a lot of attacks in the last few months and that's why I stayed at home. I had like that 3 times a week. For this reason, I always have painkillers with me so that I can somehow make it home.
My friend somehow helped me up. The teachers then tried to make fun of me until I ran back up to the office with my girlfriend (I was at the top of the class at first, then had to go to the bottom to the lockers) and my teacher, where I was fortunately the favorite student with me and my companion came and other teachers gathered around me and watched as I fought. The students and teachers who wanted to make fun saw me feeling so bad that I was barely able to breathe and stand. I still don't know how I got back home.
But one thing I can't get out of my head is the comment:
“Just drink water”
Yes, of course I can do that by
drinking 1.5 liters at 11 a.m.
But now I need something very strong because the painkillers didn't help. Tips on how to really help
1. you should just be quiet
2. ask what the other symptoms of the
person are (not all are the same, there can
always be other symptoms) in order to
best prepare for them
3. the person best do not attack
4. Avoid stupid comments
My mother and my aunt had very bad migraine attacks.
They were always knocked out for several days. The worst thing about my aunt was that she also had cancer and her work colleagues portrayed her as a malingerer. Her cancer was incurable. Luckily, my mother was a bit more flexible in her career and was able to arrange her own times. In addition to the migraines, she was highly allergic to many foods and nickel. She was later diagnosed with cancer too.
I'm glad that I "only" suffer from an aura migraine, which has only occurred very rarely and only lasts 20-30 minutes. It first appeared during pregnancy, then 12 years later after my mother's death, and since then more often in stressful situations. One of my children also has aura migraines. On the other hand, I have been given Maxalt but have never taken it because the symptoms are only short-lived.
I have other complaints due to another chronic illness and I notice how everything is “trivialized”.
When I'm feeling bad, I often get sayings like: "I'm not feeling well right now, I have pain here and there." “That’s the age, it’s completely normal.” I get a pension because of total disability, I don't get it because of a few little aches and pains! It's bad that only VISIBLE illnesses are taken seriously.
Hello,
big thanks to the Kiel Pain Clinic for this article on the topic of migraines. Instead of constantly justifying myself, I'll just keep your post in front of you in the hope that they'll notice something.
I had my first migraine attack when I was 12 years old. Since then I have had attacks every now and then. And there are always problems due to ignorance on the part of me. Because migraines are only associated with headaches of any kind or as an umbrella term. That's not the case. Only a headache would be a wish of a person affected. When you can no longer take in liquids yourself without them going back and you end up on a drip at some point.
Sayings like: Well, looking too deeply into the glass at the weekend are standard.
Migraine... Well, unfortunately, a restriction that is incomprehensible to outsiders.
As many of the previous speakers also describe, the association of migraine=headache.
If you, as a migraine patient, report that the headache is often accompanied by nausea and vomiting, others often comment with “I also had a thick head and puked over the weekend.”
It's stupid when your colleague talked about a brilliant party at the weekend three minutes beforehand. Dear people: this has nothing to do with migraines!! Just drink less and you won’t have this “type of migraine” (LOL).
In addition to unbearable headaches, migraines - at least for me - have accompanying symptoms such as sensory sensitivity, nausea and vomiting. My field of vision is restricted and my sensitivity to light increases. The only thing that helps is: lie down, open the window, pull down the blinds.
I also know from my family that I am extremely sensitive to noise.
The person hears a pin falling over three floors and finds this “noise” unbearable. Luckily I was spared from this.
Nevertheless: When the migraine hits, you are out of life. Concentration and perception are absolutely removed from your body.
With me, weather changes (changes in air pressure) are the trigger and therefore I am more affected in autumn and April (...does what you want).
The bad thing is that you can't actually tell. In the best case scenario, you'll be a little pale in the face. And what is very close to me are comments that contain the hidden message. that you are a malingerer.
I think I inherited migraines from my mother. And I know that I passed migraines on to my children. My oldest has a similar personality to me. My son often deals with “silent migraines” and has neurological breakdowns with temporary one-sided blindness. The worst thing is with my little daughter (14): She is 100% severely disabled (mentally/physically) and cannot speak. So she cannot inform us about any pounding headaches associated with nausea or other neurological deficits. If she has sudden, painful screaming attacks, I will sensitively try to find out whether it is a migraine. Then I feel the temples and massage gently at specific points. If this calms you down, I'll assume it's a migraine attack, as I also feel an improvement when I massage/have my temples massaged when I have a migraine. For the little one, ibuprofen or paracetamol fever juice usually helps. This means we can quickly get you into a tolerable pain situation. She then becomes sleepy and quickly falls asleep.
Many years ago I was allowed to serve as a “test subject” when triptans were introduced. Not all triptans work for me. But with sumatriptan it works quite well. But not everything is good after taking it. I'm still off track, weak, sleepy, weak and have very sensitive perception. Only pain and nausea are properly contained.
I wish NO ONE would ever have to deal with migraines.
And to all the doubters: When a patient diagnosed with migraine talks about migraines, it throws that person off track for a few days. An Alka-Selzer isn't enough.
And leave really unnecessary tips and comments. They don't do you any good!
I suffered from migraines as a young adult, but they have now returned during menopause. I take hormones for other problems and have decided to gradually reduce them. Because that was how the misery started slowly. I currently have migraines an average of 15 days a month, which is about one attack 2 to 3 days a week. Triptans are the only thing that helps. Sometimes I have the impression that they just postpone the attack. The attacks often begin with cravings and yawning attacks, and are accompanied by severe freezing, nausea, strong sensitivity to noise and the typical feeling of illness. The problem is ignored in the family. People don't talk about it, what should we do? I seem to be in a bad mood and listless at the time, I do everything slowly (otherwise my head will buzz even more), but I still have to function and I feel very bad. I also kept hearing “Is that even a migraine?” “Then take enough painkillers” (but they don’t work) or even “When you’re 60, the nightmare will definitely stop” Who else would you advise to just endure the pain for years? I often feel like I'm not being taken seriously. The fact that I only ever plan for the short term and can never make reliable commitments is met with incomprehension or is noted grumpily. I simply can't attend an event when I'm feeling unwell or don't feel like entertaining, because then I'm a different person. I'm making it all up to myself and even the gynecologists don't see any connection to my medication, organically everything would be okay. That's why I'm now reducing the hormones as another attempt to get this under control. I would rather be bathed in sweat and sleep worse than endure this condition for much longer. Luckily there are triptans that I only use in measured doses. And I still have hope that an end is in sight somewhere. And when I say “Today I finally feel optimal again and would like to make the most of the day” then I often have the feeling that no one understands what I really mean by that and how happy a migraine sufferer is when the storm clouds have cleared in their head and you can finally function again.
I've been turning the tables for a long time.
If one of the usual nonsensical and ignorant sayings comes up (as listed above), I ask in detail what the person knows about migraines and where they got the information from. Then only hot air comes, and I make that clear by referring to the specialist information on the Kiel Pain Clinic homepage. Then there will be peace on the ship.
What particularly annoys me is that my colleagues regularly say that they have migraines but then still work.
A few years ago one of you said to me that she couldn't imagine having a migraine. But for the past few months she has been using this term when she has a headache. In our office, the term is generally equated with a headache. But migraines don't just mean headaches. It strains the entire body. All senses are hypersensitive and so easily irritated. I usually vomit every 10 to 30 minutes. And this over many hours. It must be dark. Sitting in front of a screen and working? No chance. I'm even lucky because the intervals between my attacks are still relatively long. Approximately every 4-6 weeks. One attack knocks me out for a maximum of 3 days. I feel guilty every time I have to miss work because of my migraines. Among other things, because my colleagues work despite having “migraines”. This may sound strange, but I have the feeling that my illness is being extremely downplayed and that I am not being taken seriously. In my subjective opinion, migraines are still considered a synonym for headaches by many people. I think that sucks, to say the least -.- I would like that to change.
To all migraine sufferers out there, hold on, don't let yourself get down and do exactly what you have to do for yourself during an attack <3
A very stupid saying from people you know about migraines: you need more sex. I don't think there is a suitable answer, I just wish you had a migraine for 3 weeks.
In the summer of 2015 I had my first diagnosis of rheumatism, shortly afterwards I got my first migraine attack just before my period, it just came out of nowhere and lasted for almost a week, since then I've been getting them just before my period, what partly a sign (for me) that I'm getting it now haha.
However, as time went on it got worse and worse.
Now I get migraine attacks even when I'm stressed or upset and unfortunately nothing helps except sleep and rest.
The others always say that I shouldn't play it up so much and that it isn't that bad, but I always keep my pain to myself but just withdraw and sleep all day instead of doing anything.
In fact, I also have phases in which my vision is poor or I am so sensitive that I can no longer see anything.
Things got so bad after I developed rheumatic fever that the fever eventually stopped, but the “strength” of the migraine attacks didn’t really go away.
But when I was in Thailand, I got an oil there, and since then I've used it for every attack, which often only shortens it to 1-2 days or, if I'm lucky, gets a little better on the same day.
I didn't realize how different migraines can be until friends told me about their migraine cases and also explained that it can also manifest itself in other things.
Not being alone is often a relief and gave me something to hold on to.
“Drink espresso (but not too much, it’s bad for the stomach), eat pretzel sticks!” That was my mother’s advice and her only “treatment” for years. I was never seen by a specialist or even a family doctor with my severe migraines, even though I often vomited for several days and was disoriented and dehydrated. My mother is a doctor.
Currently looking for anything to alleviate my migraine attacks right now... I came across this article. Wanted to add my two cents.
I've only had migraines since I was around 27 (2016). My guess is that the second concussion a few months before and a nervous breakdown are the causes - before that I had a headache, but not a migraine. And she has the talent.
At first I didn't know what it was or why I got such bad headaches. It ruined many very important moments in life. I'm talking about "once-in-a-lifetime" moments with close friends.
It's not yet clear whether I have a migraine or a cluster headache. But probably more like a migraine, as I see a slight aura about every 5-6 attacks. But as soon as the attack starts very slowly, I know that the next few days will be difficult or even 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 a breaking headache for up to 7 days and almost no one, apart from my doctor, believes me that it completely hinders my life. Like a pressure that can't escape from your mind. I've already been able to rule out the worst possibilities - thanks to MRI, but there's still a long way to go to treat it properly.
Thousands of years old skulls with carefully drilled holes are often 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 crazy, but sometimes I could throw myself off the balcony in pain.
I hear too often that only women have migraines. Or even worse, what's missing here: "You probably just have a hangover." I've barely drank at all for years (once every few months).
Or complete misunderstanding of the level of pain
...
Then comes from me: “I BROKE 6 RIBS AND ARM AT ONCE IN AN ACCIDENT AND HAVE TO HANDLE MYSELF AND 20KG OF STUFF 13KM OVER 5 HOURS ON WALK THROUGH THE PATAGONIAN WILDERNESS! I KNOW WHAT FUCKING PAIN IS, YOU SOFT CITY SLUT!”
It may be that the headache doesn't heal for months, but the headache is often more intense than that. And it's in the head. Where the “I” is.
There's so much to talk about, but I'll keep wandering around the internet, hoping to find something at 3:15 a.m. that will help me ease the pain. Because the pain is too strong to sleep.
Stay strong, my dears, and don't let yourself be defeated. There are many of us who can understand each other.
A very popular one among my colleagues is: you definitely haven't drunk enough/you need to drink more. This also helps me with headaches / it goes away straight away...
Since May 2020, my migraines have occurred suddenly and chronically, including chronic tension headaches.
I initially had migraines every day of the month. The side effects were also really bad. At first I kind of dragged myself to work. In September 2020 it stopped working and I went to the hospital. I looked like death on pines and was completely emaciated. However, in neurology I was not taken seriously and it was claimed that the migraines were psychosomatic. In other words, I didn't get any prophylaxis, apart from amitriptyline for the chronic tension headaches. But I had to demand this emphatically. I should then undergo psychosomatic therapy in the clinic. This started in February. It was hell because I still had migraines 30 days a month and then had to take some kind of therapy. The doctors there had no idea about migraines. For example, I was at a doctor's consultation and the doctor said I didn't look good at all. I then just said that I had a bad migraine again and that I would lie down again straight away. She then said that the weather was nice and that I could sit in the sun for a bit or go for a walk. The therapists weren't any better either and sometimes claimed that I was putting off the migraines in order to avoid therapy or that I should talk to my migraines. After begging the chief physician several times, a neurological consultation was finally arranged and luckily I got to a neurologist who had an idea, but wasn't there in September. She was horrified that I hadn't had prophylaxis yet and ordered topiramate. So from April 2021 I finally had prophylaxis. Unfortunately it didn't help and I tried several others. I then got Botox in the pain clinic and I have been receiving Emgality since July 2022. Of course, I lost my job during that time and will now soon be financially entitled to citizens' benefit. I've been able to apply again since March because I'm doing quite well at the moment. I'm now at around 15 days of pain per month, which is still a lot. However, the attacks are usually easy to treat. Unfortunately, that wasn't the case before the antibodies because triptans and the like didn't work. I hope that it stays that way or improves even further. However, I am extremely angry at how I was initially treated, or rather not treated, by some doctors. If someone had reacted more quickly, my financial situation might now look better.
Since I've had a migraine attack almost every weekend since the beginning of the year, I tried beta blockers out of sheer desperation... It failed, the side effects were too severe... Now I'm taking painkillers again to control the pain.
And I had to hear all too often from my ex-boyfriend (that's why he's my ex-boyfriend now) that I had once again ruined the weekend with my migraines... Most people don't actually know what they're saying and how their statements are hurtful. I've even heard this well-intentioned advice from my parents...
Hello,
I just had to ask my sister to stop taking the painkillers...as if I were taking them every day.
The fact is, either I take a simple 400 mg ibuprofen at the beginning when I have harmless knee pain to be pain-free for at best 3 days/nip the migraine in the bud or I wait until the migraine really gets going and then I can also take 3 triptans not suddenly become pain-free!
So why wait every time until it becomes almost unbearable?
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 just to make it stop. For me it's always 3-4 days, very often I can't eat anything for 2 days, sometimes I even vomit still water at room temperature and then have to wait up to 35 hours until I can drink anything again, popped pills I also vomit, and liquid painkillers too, because not even water works. If I open the bathroom door, I have to vomit just because of the sight of my toilet. I can't brush my teeth either, so I go into the garden to pee. So why wait when in 99.9% of cases I don't get normal headaches, just migraines with sensitivity to light, even if it's completely painless when taken in a timely manner in a daylight-free room. In addition, dizziness, hypersensitivity to smells and wrinkles on clothes, bed sheets, and sometimes walking in front of doorposts because I don't notice where I end and where the door frame begins. And also an insensitivity to pain, so I only noticed my wrist, which was sprained in the door accident, after the attack, even though it had already gotten thick before then. I got my sleeve tangled in the door handle and kept walking, resulting in a sprained wrist, a bump on my head, a bruised knee and a scrape on my arm. If you can't even leave the room without risking self-harm or if you miss the steps and then sprain both wrists and ankles and can't even use crutches to protect your ankles, you're definitely not fit to work! You're actually just a nursing case who needs around-the-clock care.
I tried for years without pain meds because they never worked anyway, but that was just because I didn't take any meds when the headaches started, but were already at the stage where I just wanted to blow my brains out, just to make it stop, not because I didn't want to live!
I only recently found out at the dentist that there is something to relieve the pain caused by anesthetic injections. Why can't you tell the patient that there are ointments for pain through injections? – I haven't been to the dentist in 26 years because of needle panic. Why do children have to go through such shitty traumatic experiences until they can no longer be treated because they have injection panic and then somehow play painkiller “games” as soon as they grow up, e.g. overdosing on tablets or washing them down with a lot of high-proof alcohol Hoping that it passes into the blood faster than it is vomited up and that's only because if you say I don't want injections, you'll immediately drop it like a hot potato!
It makes me so mad that no one told me that I had to take it at the beginning of the attack and it makes me almost crazy until I explode that I should just let the migraine (environment) and then everything would fizzle out on its own!
I've had migraines for at least 30 years now and therefore have enough experience of how it works without medication and I don't want to allow this to happen anymore, to walk into the pain hell with my eyes open and then say things like "you could do a handshake around the house" instead just lying around in bed! It's just as scary as if they were ramming a real knife into my chest! No wonder if you prefer to be single and live alone instead of constantly having to justify yourself. Luckily, I found out what works myself. I just have to learn to rise above the hater comments from those around me and to act independently of “no wonder, you take too many pills” and to assert myself against any resistance.
I can only agree with the comments here!
All of this well-intentioned advice has already been given to me. “That little bit of a headache”… etc. Unfortunately, after a while you are no longer “in society, but on the side”.
No one wants to hear all the cancellations and maybes and then not taking part anymore. I have had migraines 24 hours a day, 7 days a week since a car accident in mid-2018. To tear out your hair, to use the toilet bowl, if time allows, to lie down and try to sleep, which often only works with aids like Melperon, to go crazy. And it's also incredibly tiring for my loved ones!! I have had aura symptoms for many years, such as visual disturbances, loss of speech, fainting spells, etc. who also accompany me. I don't leave the house without triptans! If I do forget it, it ends in a panic attack. I recently tried acupuncture again. On the way to the practice on the highway, I noticed that I was getting an aura. Thank God I was already on the highway exit. I parked my car so that I wasn't on the street and then it got dark. I stood on the side of the road for 3.5 hours in complete blindness and became more and more nervous. Police officers asked me why I parked so impossibly. It was difficult to make it clear what was going on. Since the incident, I have had a document from the pain center with me that I can present. It was only through visits to the pain clinic that I regained hope. It's very stressful and incredibly frustrating that I have to live with this, but I always have the chance to come back to the clinic.
As the saying goes: “You won't get it until you get it.”
As soon as someone finds out that I have chronic migraines, I hear a lot of things. And at the same time they don't understand what a high level of suffering this is. I find myself there in many ways.
Unfortunately, that's how I feel too.
During a therapy session, the nice lady said. You're hiding behind a headache! No, it's not like that, it's a migraine! But in their eyes that wasn't an important explanation. As the conversation continued, I could no longer concentrate on the conversation. She threw me out because she said I wasn't fit for therapy! She didn't miss the fact that I had to throw up. Luckily I had an appointment with Dr. Heinze in the Kiel pain clinic
It's miserable what you have to listen to, I know that too. Once my husband was so desperate when I had a migraine attack and was just crying and thrashing that he took me to the emergency room. They hardly cared about me there and left me lying on this narrow “bed” for hours. I was vomiting three to four times an hour, which prompted a nurse to tell me not to breathe so stupidly, logically that I had to puke...
I can only agree with the comments here!!!
“Non-migraineurs” simply cannot imagine how incapacitating an attack can be and should refrain from giving well-intentioned advice.
I've had regular attacks since I was 13, but luckily they only last about a day.
As a student, it always started on time after school. I could only spend the rest of the day in bed or over the toilet with the curtains drawn. The next morning I had to drag myself to school in agony, where it finally stopped in the 3-4th hour. Then a visit to the neurologist, who recommended autogenic training and keeping a migraine diary: The former didn't help at all and what use is it to know that red wine, cheese or chocolate or sleeping in on the weekend often trigger attacks? Because even with a perfectly adapted lifestyle (which I tried for a long time), the attacks became a little less frequent, but they simply couldn't be avoided. These things are just a trigger, not the cause and you simply cannot influence the famous change in the weather.
As a student, I was then allowed to take part in a double-blind study testing triptans at the University Hospital in Aachen.
The medication was still injected at that time. I was probably lucky and received an adequate dose from the doctoral student who carried out the procedure. After the second injection, the migraine disappeared within minutes (!). To see how well it worked, I rode my racing bike for another 100 km straight afterwards. Unfortunately, it took many years until triptans finally received approval. A blessing for all migraine sufferers that triptans are now available to everyone.
Since then, I always carry a unit with me in my wallet. Without the medication I would be sick one day every few weeks. I am now a university professor and, thanks to the medication, I have not had to miss a lecture in 12 years. I found the often well-intentioned advice “You just have too much stress” and similar sayings to be so unhelpful. Especially if you have responsibility at work and have a family at home. Abolishing your job and family can't be the solution.
I know that I am only a mild case and that for many migraine sufferers, even triptans provide little or no improvement. You all deserve appropriate consideration and understanding from your fellow human beings instead of wise advice!!
Thanks for the great article, which I (unfortunately) only discovered today!
Cool!
I was just laughing at the article itself because I have heard ALL the “no-go” sentences mentioned there again and again in one form or another over the last 40 years. Then I wanted to read briefly about the comments - and noticed that an incredible number of those affected have described their suffering here.
I'm really looking forward to being able to go to Kiel as an inpatient in December. In fact, I'm hoping to wean myself off medication. Since 2018 (also 4 years again!) I have described my migraines as chronic. If you have up to 24 days of pain per month, you can probably do that. I don't leave the house without sumatriptan and I'm happy and grateful every time the medication works. It actually does. Still.
Why I'm commenting here:
I almost believe that we migraine sufferers are partly to blame for many such sentences. No, I am not the enemy! Please read what I mean before you freak out!
Starting with myself:
I decided years ago (before I called it chronic) that I would not let migraines control me and my life!
I don't talk about it so much anymore, I swallow pills and carry on bravely. However, I am also lucky enough to have never had any side effects until recently. My head is “just” bursting. I don't vomit and rarely have an aura. What I want to say: If you constantly downplay your pain and take advantage of the fact that you can't see pain from the outside, then it's actually logical that people can't assess the true extent and come around the corner with stupid comments... Think think about it ;-)
Nevertheless, migraines are a terrible disease! The fact that it is now taken so seriously and that many employers react more empathetically than before is great! For example, my boss asked me to contact the pain clinic because he was worried about me. That's super sweet.
What really affects me is the suffering of those around me.
I have an 18 year old son. It breaks my heart when he sticks his head in the living room door, sees me lying on the couch and says “Oh. You have a migraine. Then I’ll come back later.” He knows that. He grew up with it. Mom is once again unresponsive. I'm annoyed again, can't handle loud noises, can't listen to me. How bad is that? The same goes for my husband.
As mentioned at the beginning, I rarely if ever let migraines stop me from scheduled appointments. But I can't really enjoy it because of the massive pain.
The environment should actually be classified as chronically impaired. And the relatives also have to listen to the stupid tips and questions! “Has your wife ever tried XXX” “I’m sure she’s coming from work!” “She doesn’t feel like it, that’s typical for women. Then suddenly everyone has “migraines”, a seemingly endless list.
I'm now looking forward to Kiel and am confident that I'll get a fresh start in January and have a bit more quality of life again <3
I have been suffering from sometimes severe migraine attacks since the birth of my second child, i.e. for 16 years. The first one took me to the hospital straight away, I had no experience with it and suddenly had paralysis and visual impairment, which was followed by a panic attack. This went on a few more times. It took a while until it became clear that I had migraines. Unfortunately, the attacks also caused so much tension in my neck that I actually suffer from tension headaches every day. I can keep it under control to some extent through yoga and relaxation exercises, but I no longer know what it feels like to not have a headache. Migraines come once or twice a month with full force for exactly 3 days. Then I'm really capable of spreading. I can't tolerate light and noises feel like electric shocks. In addition, my ears close and a feeling of excess pressure arises in my head. I don't drink alcohol, but I'm often called a fun-lover and bland. The advice is always particularly great, and not everything would help, but I don't want to... Bla bla bla. God knows I've tried everything possible, and in some cases I have much more specialist knowledge than many family doctors. I have a very understanding husband who is there for me, but sometimes I feel like I'm annoying him with the constant headaches. Nevertheless, I try to enjoy my life, I only have one thing and my skull is part of me.
Migraines are a terrible disease.
When I don't have any, I live my life, am happy and literally suck out everything positive. I've lived like this for twenty years.
For others, I'm in a bad mood, dissatisfied and can't stand anyone. You wouldn't wish such dark days on anyone else, this incredible pain that sometimes leads to fainting;
can hardly speak, can hardly walk. So I am considered to be cheering to the sky or sad to death or even “made”, namely manic-depressive.
Here are some examples from my life:
Do you have a headache?
Do you have a migraine? These are sexual climaxes…….only in your head. You should really go through the motions again, then it will stop!
Said my boyfriend when I was 18! Or —How do you raise your children?
It's your own fault if you have 4 children! Then you get a migraine! Said my sister….who has no children! Or —A teacher said about my daughter!
She can go to school with a migraine... I have it too and there's really no reason to stay at home! My daughter was just 9 years old and this from a woman who should know Waldorf education!!
Or – it’s happening to me today!
But today I have a piece of paper with me with the diagnosis on it! Then they are quiet... always with a reference to the Schmetz Klink Kiel!
My husband, now 71 years old, recently said: Do you have a migraine again? You just don't want to go to visit so-and-so! We've been together for 50 years and my migraines started when I met him, I should think about it!
A teacher once said to me, migraines are just an excuse, in reality you don't want to go to school!
I also have migraines and can work with them. I was 15 years old at the time and was stressed about high school. Because of the illness I had to leave school and then did my Abitur a year later! Of course I wish this teacher only good things but….
I still have to think about the “doctor” who showed me during the stationary measurement of the nocturnal increase in intracranial pressure, ie. while confirming what I've been saying all along, FOR YEARS, writing a letter about how psychosomatic my pain is. Something like this works in a university clinic, even in neurology! Unfortunately, I'm not allowed to write here what I would like to tell this colleague.
I know the sayings too well.
Globules were recommended to me. If I want to suck sugar, I go to the sugar packet in my kitchen cupboard or eat a lollipop. I'm currently having fun with my landlords who refuse to turn on the heating. Working all day at 16 degrees isn't that fun. I'm self-employed and the office is cold. Tomorrow there will be a discussion and if nothing happens, a rent reduction. But these are people who are not migraine sufferers. People don't care that temperatures that are too cold can trigger migraines. It can't all be that bad. It's just a headache. Quickly throw in some paracetamol and move on.
Hello dear migraine sufferers,
I recently read the following: The WHO classifies migraine as the disease with the greatest impairment of quality of life!
This got me thinking and realizing a few things about myself and my migraines.
It's not just the days of pain that drain my life energy, but also the everyday avoidance of triggers and all the side effects of migraines. For example, I don't go out on sunny days because sunlight is one of my biggest migraine triggers. I also haven't drunk a drop of alcohol in 15 years and go to bed early every night, which isn't a big problem for me, but it does mean that I always have to listen to stupid comments and am called a drag on fun. Physical exertion also triggers migraines for me, which is why exercise, gardening, going to the playground, and sometimes even a short walk are not possible (especially not when the sun is shining). That's why I'm adding another saying here that I can no longer hear: “You're always in a dark place, it makes you depressed. Just open the shutters.” 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 saying that I never want to hear again: “Isn’t it a bit cool to wear sunglasses even when it’s raining?” or, equally caustic: “Take your sunglasses off when we talk. That's totally rude!” And when I mention to someone how hard it is as a mother of three with migraines, I can also hear: “Well, you chose that yourself.
You really wanted three children.” (I never want to hear that saying again!) That’s right, that’s what I wanted and I’m infinitely glad that I didn’t allow my migraines to deny me this heartfelt desire. Because of her I had to give up enough in life: no vacation/school trip without migraines, no birthday without migraines, no summer without loneliness (because everyone else was in the outdoor pool while I was lying in the dark room), giving up my dream job , foregoing my wedding celebration, ... I could think of a lot more. I think we people with migraines are incredibly strong! We should fight more for the recognition of our illness (which we cannot control, which we are not imagining and which actually limits our quality of life enormously) by not hiding or keeping quiet about it. I would also like migraines to be recognized as a disability so that it can be made easier for us in our working lives and even at school. (Unfortunately, I passed on migraines to my eldest child. My son can hardly manage a week of school without a migraine attack, but he still has to perform at the same level as healthy students. I can see how he is losing more and more joy in life under the burden. He I even had to stop exercising because it gave him migraines every time.)
Dear ones, hold on and remember: Migraine sufferers are above average intelligent and empathetic! The world needs us!
Kind regards,
Nadine
“Ginger Rogers could dance just as well as Fred Astaire, but she did it backwards and in high heels.” (I read somewhere recently, I think it describes the life of a migraine sufferer very well)
I know these “tips” all too well. I have had chronic migraines and chronic tension headaches since early childhood and have been suffering from chronic tension headaches for 29 years. Since my migraine is hereditary, I am at least “lucky” that my family environment is largely understanding, as some of them are affected themselves or have affected people in their own family.
Things look completely different in the workplace. I've already been on 4 weeks of pain therapy and also have a disability rating, as well as various medical and company certificates, but none of that helps. As soon as I mention my migraines or my GDB at work, I am looked at as if I were “not completely normal” and only laughed at. In addition, despite the GDB, no consideration is given to the fact that work is distributed differently, quite the opposite. And then it says “if it gets too much for you, say it in good time, not just when it’s too late”. I was hoping that the GDB would make my job easier. In the end, I could have saved myself the application. I don't know what else you should do to be taken seriously...
I was able to hear from a neurologist I saw when I was 18: “I am actually aware that every neurologist has migraines (including him) and from the way I describe it, it is much worse for him than for me So I shouldn’t act like that.”
The third (and final) neurologist replied to my statement that I had daily headaches: “That can’t be true, I’ve never heard of anything like that, you’re imagining it.” Since daily headaches/migraine attacks aren't bad enough, as a migraine patient you naturally imagine something like that...
I'm very happy about these posts because at least you know that there are doctors and other people who take the disease seriously.
Thanks for that!
Hello dear fellow sufferers!
I am now 17 and have had migraines since I was 4 years old, probably due to displaced and overlapping skull plates when I was born, but this was not diagnosed by my mother's “healer”, despite months of screaming on my part as an infant, until I finally woke up The idea came that something MIGHT be wrong.
In the 13 years, which is actually not that long compared to some others here, I have had to listen to almost every single one of the sayings here. My favorite is still: “Yeah, right, migraine!” Don’t act like that, I had a migraine once too, so I took an ibuprofen and then it went away!” My teacher didn't really understand that a migraine isn't just a slightly stronger headache. In fact, my migraine attacks have changed a lot. Initially it started with violent attacks lasting 2 to 3 days, which became so severe around the age of 10 that I sometimes simply fainted. Fortunately, a really strong attack now lasts a maximum of 1 to 2 days, and only happens about 4 a month. The small attacks are problematic and really limiting for me, as I can have them several times a day, but then only for a few minutes. But since I have migraines with aura, they almost always lead to complete “blindness” as a harbinger for me and actually lasts around 1 to 2 hours, I really struggle with it in my everyday life. Unfortunately, I don't have access to medication or further diagnosis and/or treatment because my parents both work in the healthcare system (surgical nurse and nurse) and don't think it's necessary to give their 17-year-old son, who is convulsing and vomiting, more than one tablet of ibuprofen 400 mg to give with the words: “Yes, you can take another one later if it gets worse” or “Don’t act like that, that will have to be enough, that always helps for us/the patients” To combat the loss of vision it was just “ “Yes, we can do an MRI and a brain wave test.” It came out that it wasn’t a tumor or anything like that, so it can’t be harmful. Thanks too. Unfortunately, migraines are often not seen as a serious illness that also has a major impact on those affected in our everyday lives. I hope this view changes soon, but I don't really think so.
After I discovered Indomethacin (neurologist: “Try it, one at night” but according to information on the Internet, such pain must be about 3 times a day and continuously; with every interruption the pain comes back) I was happy about the success I'm happy, but I haven't gotten very far, at least so far.
A clarification, a pressure measurement over several days, shortly beforehand in a university clinic showed that the temporarily increased cerebrospinal fluid pressure was also causing the pain, ie. I can figure it out now. But unfortunately, at about the same time as this report, I received a nice letter from an assistant doctor from the same clinic who - this must have been a solo effort on his part - once again portrayed me as a malingerer and labeled the pain “psychosomatic”.
The investigations there showed this without any doubt, and the report mentioned feels like a slap in the face to me.
Measurements before that elsewhere showed similar increased values, without me receiving any relevant feedback, apart from changed values in the reports - I was told something different, or I was punctured twice in a row and the 2nd value was noted - or a verbal “that can be done.” Not be"; and reports were not created or not complete.
I have had this problem for so many years and it is said that so-called trigeminal autonomic headaches are “easy to diagnose”.
(Just FYI, this is about years of severe migraine-like pain).
Up until then it felt like there were tons of beta blockers, topiramate, Botox, which were unsuitable for me because of...
Facial paralysis, ibuprofen (if that helps with migraines it would be known), amitriptiline (of course, the chocolate is on the house) and again beta blockers... beta blockers, beta blockers and again beta blockers and now and then CA antagonists. Before I got triptans I had to try codeine with paracetamol for half a year. Only then did I come across this medication, which helped me at least temporarily. Even with triptans, you can't get around the exhaustion that sets in after every attack and that gets stronger and longer the longer you have it.
The best statement so far, from a gynecologist, was “...you have to be able to endure the few headaches”.
You can start to think about it.
I once had a friend who had that. You'd have to be pretty blind not to realize what torture it is. She broke and curled up into a ball. The only thing that hurt me was that I couldn't help her.
Standard sentences:
1. Definitely didn't drink enough.
Have a drink! 2. No wonder with the air here, just open the window!
3. I read that chocolate etc. is to blame.
Leave out various foods 4. It's probably because of the weather
5. It's definitely because of the moon
6. I also have a headache today
7. Why don't you go to the doctor
8. You have to change your life
Like so many others, I read the article with both a laughing and a crying eye.
I have suffered from migraines since I was ~14 (diagnosed at 16). I currently have 7-8 attacks lasting at least 24 hours per month and the previous prophylaxis is not working. The injections will be available from July and I hope to achieve success with them. I work in the healthcare sector and many people say “yes, I know that…” But as soon as you are missing, they start saying things – now the boss has cut my hours “So that’s nothing against you , but that's too strenuous for the team if they're regularly absent.." Colleagues say "yes, so do some exercise to combat it" "it can't be that often" and "yes, they just have to avoid their triggers" – Thank you very much, two of my many triggers are flickering/exhausting lighting conditions and changes in air pressure. I have to explain to me how I should get around them :D I now also go to work during the attacks because we get sick at least 5 hours before the start of work I have to report that I have to vomit regularly at work and have to take triptans + daily doses of ibuprofen and paracetamol and travel tablets. Well, you get the feeling that it has to be that way. I have the feeling that I'm just sleeping
and working Fortunately, my partner, who is also very understanding, takes care of the housework and our dog.
The next step will probably be to apply for disability and try out the injections
This migraine journey is really exhausting and I wish everyone affected a lot of strength and those not affected the ability to simply shut up when the comments hurt more than they help
A colleague (male) once said to me (female): “Surely you know that more sex is supposed to help. You’ve probably heard that too, right?”
Luckily that was an isolated incident.
What's really driving me crazy now are the questions from family and friends about whether I'm feeling better again. I could explode if I heard that.
I usually have an attack on one side for 2 days, then the next day comes the next attack on the other side, which lasts again for 2 days. After that I was completely exhausted for another 2 days.
If one attack phase is just over, I wouldn't say that my migraine is better, because I know that the next attack could come tomorrow.
For me, “better” would mean I have fewer seizures. But you don't want to understand that, even though I've explained it many times. Then I have to listen to: “Yes, but it’s gone at the moment!” Yes, great, and then I'm in a good mood and able to function. Nobody wants to understand that chronic exhaustion and excessive demands are becoming more and more common as a result of “normal” everyday life and that you can’t do everything that others do.
I would say that the lack of understanding of those around you makes the illness even worse because it creates conflicts in your life that are also stressful.
I have had migraines since my daughter was born (she is now 31).
Since I worked independently at home for 25 years, I had no problems with the employer. For me it was really bad...I had a seizure, was lying in bed and just managed to call work to report myself to AU...the answer was prompt, call me later when you're feeling better and bring the sick note with you tomorrow …..I lay in bed for 3 days…luckily the doctor wrote me off sick for the whole week because I actually dragged myself into the practice on the 2nd day, crying.. Unfortunately, that’s just how it is for most
people say…do something about it.
I have already tried everything mentioned without success. I'm so glad that my family and my husband take me 100 percent seriously. My neurologist is also great.
Oh yeah and the sledgehammer greets you every day... that's what I "affectionately" call my migraine pain that has existed for 17 years... now the article has made me smile a bit, even if it's actually no fun... ironically, in 2017 my sledgehammer presented itself as a little lifesaver, 3 brain aneurysms, 2 of them on the left and right of the temples, the third placed in the middle of the brain stem .. you can use it as a 25-year-old full-blooded nurse and mom - not .. the same applies to the daily hammering in my head ... when I was a teenager it was the crooked ones Wisdom teeth, then the excess weight and then the coincidence because after a strenuous night shift I collapsed before going to sleep with an extreme aura... I think every owner of a “sledgehammer” feels the same way about them... I find it all the sadder, I found this article by chance and that this real disability in life is not taken seriously or is “discussed” too quietly... all the more, thanks for the great article :)
But I would like to give you a “great tip”: the next time you have a clever joke, take your imaginary sledgehammer and hit the person straight away.. that will certainly do more than the pointless banter 😂😘😘
Thank you for someone who brought it to the point!
As if suffering from migraines wasn't stressful enough. I've been tormenting myself for 28 years now and I've felt like I've heard every comment. I'm sure we all know the rush from doctor to doctor. For me, the climax was reached when my brother-in-law's friend gave me the advice to go to a REAL doctor... Unfortunately, I also have to experience that my daughter now apparently also suffers from migraines.
She's 21 now, which is also the age when it started for me. It's so horrible to watch her struggle and know exactly what she's going through. I feel so guilty that I passed this crap on to her :-( I wish everyone affected all the best and many pain-free times!
I know it too well…
Discrimination is always stupid.
My partner also had to experience several severe migraine attacks before he could understand how bad it actually was. Since my mother also suffers from migraines from time to time, I can always count on my parents for support. If I call in the middle of the night because I don't think I can bear the pain anymore, or because I've been vomiting for hours, alternating between chills and heat, and I'm afraid that something might happen, then I'm called straight to them and “monitored”. Some of my colleagues understand me, but unfortunately my boss doesn't because she can't put herself in my shoes. She only ever gets sick on vacation, never has a migraine, and also comes to work when she's sick. Well, I do that too, i.e. go to work when I'm sick, but with migraines that's just impossible.
Wishing you all that things get better for you in the future. My migraines used to be more frequent (14-24) and now, fortunately, they only occur 5-8 times a year for a maximum of 24 hours.
A pharmacist recommended Schüssler salts to me. They would definitely help. I told her - because this information disappointed me very much, very poisonously - that I am usually allergic to Schuessler salts. She then looked at me insulted and angry. Well, that's life... But I felt good because I was able to say something stupid back.
I started getting migraines when I was 13 years old.
Missed a lot of school days. Stupid sayings and bullying included. When I had a migraine during a school trip, it got better, but a lot was still made of me. Now I'm 19 and suffer from chronic migraines. Ie in a good month 6 pain-free days. I know all the well-intentioned tips and advice. Tried everything and nothing helps. It's meant to be kind, but you really can't hear it anymore. Oh, you're way too thin! No wonder... something on your ribs and you'll feel better. That's rubbish! I've tried everything about prophylaxis.
Was in migraine clinics (I can still only recommend it! The exchange is good!) Now I've had Botox for the 1st time...unfortunately I don't notice anything yet but you can only judge after the 2nd dose.
After that, the only alternative I have is the injection. I'm really worried that this might not help me either.
Can't plan for the future, can't do any training. Who will take the one trainee who is present at most once a week!!!????!!! Nobody!!!! So, we migraine people can happily do without any stupid, well-meaning or smart-ass advice and wisdom!
Thanks for your site...let's just hope that those who aren't affected read it too!
I have not yet experienced bullying at work because my colleagues were also affected. However, lack of understanding and stupid chatter about the illness of people who aren't affected happens every now and then, so I no longer mention why I'm calling in sick. If I do get asked, it was just the stomach or something similar.
My big brother often tells me during my attacks: “It can’t be that bad, everyone has a headache sometimes”. Then I tell him that it's not JUST a headache and then he replies: "What's so different about it?" You will survive". I suffer from chronic migraines so I often say “Mom, I have a migraine, I have to go to bed” or something else and then I always hear from my brother: “again? You can't have that so often, I can't hear that sentence anymore, it's getting annoying." This often hurts me because he has never had a real headache in his life, if only he knew what migraines were like...
@Kathrin Witt
I am very sorry about that. Please talk it over and stop doing so much when you're feeling bad, then they'll learn to appreciate it. You're a strong woman. All the best for the future!
I have had migraines for as long as I can remember, since I was about 3 to 4 years old. I often had to hear that I was a malingerer or that I did more sports and I had to listen to all the sayings above. Unfortunately, I have been obese for a few years and now I always hear: “You have to lose weight, then the migraines will go away or they will get better”. Sometimes I had to have doctors tell me this. My whole life is determined by such statements. I've gotten used to it now and don't say anything more about it. Luckily I have a good pain center. There I find the few people who simply take me seriously.
Unfortunately, our society has not yet fully understood what migraines are and how bad they can be. Especially among colleagues, people like to make fun of it and say, “He has another migraine, he must have drunk too much at the weekend...” etc.
That's why I'm writing a comment here because I think it's really good that someone is pointing out what not to say. My appeal to everyone who is not affected: Save yourself any sayings and comments. Just leave people alone with Mirgäne.
Hello to all those suffering from migraines,
I always hear from my husband: “But a little bit of housekeeping will still work!?!?”
So over time you learn to let yourself be noticed less and less and to simply function. My luck at work is that my boss suffers from migraines himself and my direct supervisor is usually understanding. I've been taking beta-blockers since February and I'm so happy that instead of having one or two attacks a week, I actually have a two or three week break. Last time it actually took six weeks between taking two tablets - it was pure happiness on earth...
Your migraines are definitely due to the climate!
Why do you need a migraine if you don't have sex to avoid anyway.
Hello, I have had migraines for 15 years. I usually suffer from them twice a month for three days. The migraines also come to me every now and then for one or two days. About my illness: I feel really bad, weak, without motivation and more than that Tired. I've been forcing myself to cope with my everyday life for 15 years. Even though I'm not feeling well with the pain, I still do my housework, do the laundry in the basement and go shopping and take care of my animals. and cook meals. Even with mine I go out with the children and the dog. My companion is still the migraine.
I do my work from home so fortunately I don't have to call in sick.
No one in my family understands my problems. They think I'm acting like me.
I never get any support either. I then stand at the stove and cook the food.
Sometimes I think how crazy this is all given to others who also have unbearable pain to sleep in a dark room.
But I'm here and I carry on. Sometimes I think I wouldn't be able to sleep with this unbearable pain. I don't know, I'm always active.
I gave up taking painkillers because they never had the desired effect.
I also read that it could make things worse, which is why I stay away from it. I endure the pain until it's over.
What shocked me the most was that you have the pain one day and when you wake up the next day you still have the same pain.
Some days I am very desperate because there is no one who understands me.
Sometimes in the early evening I doze off on the sofa in front of the TV because of sheer exhaustion. Then you hear why are you sleeping so early. And I feel like I'm single. Unfortunately, I'd like to, but I can only lie there like that. I'm just completely exhausted 😩 I don't know what I can do anymore.. In these hours I feel so helpless and alone.
Nobody understands me.. And then I think if only the stupid pain would go away then everything would be fine. But they are there and nothing is good.
I'll probably have to live with it
I've often had to be accused of malingering, "Simulating like a girl, you could come up with something new to avoid work." "Take your legs in your hands and not your head, it won't work Work” “Hey girl, what’s the weather going to be tomorrow? Don’t forget, you’re middle class” “Leave the thunderstorm at home, you don’t want it at work” No matter where I’ve worked, whether in construction, in therapy, in the hospital or in nursing, after 3/4 absences the bullying stops Come on.
How many times have I had to hear from friends and acquaintances that I'm a malingerer, lazy at work because I've constantly lost my job because of my migraines and how often do I have to hear something like that? Migraines or headaches don't exist, it's all just in my head. Look for a psychologist It's nice when there are people who don't know what headaches or migraine pain are because they have suffered from them, but to insinuate to the people who suffer from them that such a thing doesn't exist is the biggest mess. An acquaintance of mine didn't tell me that either Something like that doesn't exist. She once saw me having a migraine attack. She saw me vomiting and lying in bed. She told me that you can't do that. Actor, you're really not feeling well. Unfortunately, you can't say anything like that anymore. I find people Those who have no idea about it should just keep their mouths shut or inform themselves first before giving any advice. A friend of mine who also suffers from migraines today said to me that you have been enduring such hellish pain for 30 years and this person cannot expect any pity from me I was often humiliated and called a weirdo by this person. Now at least I know that I have been going through 30 years. I can only say that these people who have no idea about it should first inform themselves before giving advice, which can make sense and the board
I can think of sentence number 12 that you shouldn't say to people with migraines and/or chronic facial pain:
–> you have to try to deal with the pain better instead of spreading a bad mood because of your pain, and
you have to look within yourself to recognize why you have the chronic pain, I have already noticed that you are “not at peace with yourself” , etc, pp. I could name a few other comments that say the same thing.
I find comments like this a slap in the face because you are basically told that you can influence the pain at will. There is real pressure to improve because, in principle, the misguided psyche and attitude to life are causing the pain and it is your own fault, so to speak. Even the psychotherapy doctor I'm being treated by thinks that I shouldn't attach so much importance to the precipitating factors/triggers because otherwise I'll restrict my life too much, which in turn increases the pain symptoms.
I agree that this involves a certain limitation in the quality of life. But if I know that, for example, alcohol, chemical fumes, saunas and certain foods with a high histamine content can trigger a migraine, why should I expose myself to it and risk even more migraine attacks, which will ultimately increase the frequency of attacks unnecessarily? This worsens my quality of life more than avoiding certain triggering factors. Every pain therapist recommends avoiding known triggers, but psychiatrists reject this strategy as wrong. I think it's wrong to question and psychologize the physical causes of pain from the outset. Unfortunately, there is still a lack of sensitivity and understanding when dealing with pain patients today.
I just discovered this site and have to admit that I haven't read all of the 200+ comments. I've been suffering from migraines since the start of my period, I've been going through menopause for many years now and I'm hoping for improvement when it's finally over. If you spend half of a month trying to make ends meet and function somehow, that's a massive reduction in your quality of life and also a huge feat of strength, because every attack just drains a lot of energy. Luckily, I work with people who know migraines themselves, including my superiors. So it's not that bad for me to call in sick if nothing works for three days. For years I have always been well stocked with triptans and not a day goes by that I leave the house without my medication. Over the last year I have tried various prophylactic medications. Unfortunately, all of them have extreme side effects and, as far as migraines are concerned, they have NO effect. I had to go this route in order to be authorized to be prescribed the new, but very expensive, medication. I received my first injection on December 21st, 2020. That was 2 1/2 weeks ago. During this time I had two relatively harmless migraine attacks in the first three days after the dose. These lasted no longer than 2-3 hours. I can't even say what a quality of life improvement this is for me. Thanks to my neurologist who walked this path with me. I hope that I continue to respond well to the injection because this is the first time in my life that I feel good and don't have to think about whether I can do this or that because I always have to expect that Migraine puts a stop to my plans.
I've had migraines since I was 11 (since I started my period) and I can't get into the diagnostic chain.
I go to the doctor with migraines and can't get a referral to a specialist. Often people don't say that I have migraines, but rather I am advised to lose my excessive weight. Even as a child, when I was still slightly overweight. It's tiring, some doctors are tiring. There is generally little understanding of the disease.
But there is also: Don't take a pill! when I tell you that I take triptans. Then I'll be labeled a wimp. :( and: “Aren’t you afraid you’ll become addicted to painkillers?” No, I won’t.
I have been suffering from migraines for 16 years, since I was 4
years old. I'm currently doing my high school diploma on the second attempt (had to drop out at 16 because of migraines) and it's so difficult. Unfortunately, I have a chronic course and severe pain with interruptions every day. (Severe nausea, can't see properly, etc.) At the moment it's almost unbearable again. I constantly feel guilty and try to force myself to do everything, of course by force and in the end with less than satisfactory results. Today was another one of those days that made me completely doubt humanity. I had another bad attack during the lesson and my teacher couldn't think of anything better than to announce loudly in front of the class: "It can't be done that you're always feeling so bad, but you must definitely be doing something wrong, I say You probably watched too much TV, didn't drink enough and didn't sleep. It can’t go on like this, you can’t go to school.” Thanks for that. I keep my grades in the good to very good range with all my might, but it drains me. I want to do it but the people around me make it so difficult. You are a lone fighter in everyday life and have to put on a thick skin. I am all the more grateful for articles like this and all your comments and to know that you are not so alone after all!
It is very revealing what a flood of comments are gathering here on this topic.
My own experiences fit in well with this. I also suffer from repeated 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 during which I throw up about every 30 minutes without ever being able to eat or drink anything - that's okay then the whole day until it finally stops in the late evening hours due to sheer exhaustion. Then there's usually another day when I'm just completely exhausted and my brain still feels like a steamroller has run over it, but then the pain subsides and in the days immediately after an attack I feel as clear and light as possible otherwise never. Then the tension builds up again over time and the latent feeling of pressure in the head increases again until it erupts violently again, which then only requires small triggers, such as a little too much sun, a beer the evening before Staying in one position for a long time, social situations that stress me out... the list is endless. Although I consciously don't work full-time for this very reason (4 days a week in the office, with Wednesdays as a "breather day" + a part-time job in the fresh air on Saturdays), it still happens every now and then that my migraines fall on an office day which I usually struggle through somehow because I know that my next day off (free to be sick without feeling guilty) isn't far away. But colleagues still sometimes notice it, which is why an eager colleague, who is also very interested in alternative medicine, including homeopathy, recently came to me in a very conspiratorial manner and gave me a stack of text that she had taken from her favorite book “Mediale Medicine”. had copied – it was the chapter on migraines. The author's approach (who, by the way, gets all his information whispered by a divine spirit - no joke!): no dairy products, no eggs, no gluten (i.e. bread, etc.), no meat, no fermented foods, no table salt, no glutamate, no alcohol, no chocolate(!). He cites stress, menstruation, sinus problems, intestinal problems, an esoteric virus that only he knows about and much more as triggers. Since basically EVERYTHING can cause migraines, you should try to avoid EVERYTHING. I think to myself, of course, if I could sit on an island, shielded from all stress, no longer have to eat and stop menstruating, then I would probably be fine - thank you very much. But since the triggers are essentially interchangeable and even if I manage to avoid 90% of them, the remaining 10% will get me, that can't be the solution. The problem is that there is something in you that can be triggered so easily. For me the pressure would simply increase until the slightest irritation provoked an attack. In any case, she will definitely come to my desk soon and say “So?” with her eyes shining. ask…and the next time I feel pain I prepare myself to ask if I still eat bread….
I often hear “don’t act like that, it can’t be that bad” or you’re just simulating” and the typical “just take a tablet” is annoying, especially when triptans usually help, but I do them all every time only imaginable side effects that are listed in the package insert. You then have to decide between pain caused by migraines or no migraines but other extremes! Impairment due to the side effects (pain in the limbs, even a piece of paper is too heavy to lift, speech problems and even a paralyzed tongue. If any of you in the community have tips, please get in touch! Lots of love and strength to everyone affected!
Hello, my dears.
I don't know how or where to start.
It took me decades until I found a doctor who immediately saw that it was a migraine and not a headache. Thanks to my family doctor that I can lead a comfortable life again today. In my early childhood days (5 years old), I had headaches and back then stomach ache, nausea, etc. But the fact that it was a migraine was never diagnosed. As a human being, you slowly instinctively learn to do something about it in order to make this pain more bearable. Funnily enough, I found out that when I got some kind of flu or cold, there was tussipect with codeine which my mom gave me. Strangely, my migraines were greatly suppressed by taking this medication. When there was another attack, I secretly drank it. As already explained, I was five years old. Today I am 55 and I say migraines cannot be cured but they can be reduced.
I can agree with everyone here on the topic of migraines with aura, nausea with vomiting and sensitivity to noise and even suicidal thoughts. Because I was really on the verge of taking my own life in order to finally be free of pain. I also know such advice that is given.
-You can't see your illness, so you're a malingerer
-Have something done to your feeding room (teeth) then you won't have migraines anymore
-Drink more, do sports, etc., how stupid is that because every effort increases migraines
-Smoking promotes migraines, aha something new, because if it were like that I wouldn't push it
What kind of judgment do people who are not in my shoes actually allow themselves? Migraines are not something to be enjoyed and have almost
nothing to do with headaches. Good thing we compared or something.
Please bear with me, I had a stroke 12 years ago, so what I wrote may contain spelling errors and have gaps.
In any case, the attacks really started in 2009, and my family doctor gave me a sick note and didn't let them deter me.
I had to go to the MDK several times to check whether I was fit to work or not, it was sad to come when he asked, do you drink and smoke, I said alcohol gives me migraines, his statement was that smoking gives you migraines Migraine, I thought that was nonsense, because if it were like that I wouldn't want to smoke.
Now when the sick pay ran out, I had to go to a clinic in Bad Zwesten. As a result, I was not given an AU because of the migraines, but because of complex traumatic stress disorder. I don't know if I should write this, but I'll let you take a look. What made my migraines bearable over the years was my love for some clothes, let me say, it helped me a lot when I played with them because the migraines were greatly suppressed. So in German, sex can provide relief, at least for me, but for others it can trigger migraines. My medications were ibuflam, topiramate, and Allegro for emergencies after the stay in Bad Zwesten, which is not a migraine clinic.
Migraines are not recognized, and I don't think they will be in the future either, because they are not curable.
The end of the song, 10 years ago I was put on full disability not because of migraines but because of mental illness.
Unfortunately, some learned gentlemen in white don't know what to do because they are at a loss when it comes to migraines, so it's just doctoring around
when a doctor has an ass in his pants and says I don't know what to do next.
On the contrary, attempts are made to make the patients feel guilty. In this clinic I was declared mentally ill just because I was playing with some clothes in bed, hello what the heck, it helped me
make the migraines bearable.
What was there for this from the psychiatrist seroquel, thank you for what brings relief. It's simply unbelievable to be treated by such people. I thought we hadn't stopped in medicine and that the doctor had learned
to prevent harm.
And today, after the whole odyssey, I have 2 or 3 attacks a month instead of up to 15 attacks and 3 days in length as before.
Ibuflam 600 helps me and this fun with the clothes, in German sex.
That was a small excerpt from the life of a migraine sufferer, malingerer because that's how you are seen from the perspective of those who do
n't have this illness. Have a tooth pulled without anesthesia or have your hand sawn off without anesthesia for 3 days, that's a walk in the park compared to migraines. Don't love Mirgänierans, except those who understand it.
I recently had a migraine attack again at work with vomiting etc. (I work in a doctor's office) when I asked to go home because it's quite exhausting having to run to the toilet every 5 minutes... That's all my boss said in an ironic
tone "Yes, of course, and I'm going home because of my back pain. ” and something like that to hear from a doctor. A pity.
Hi
, I also want to talk about my headache.
But it started with an earache and then at some point I had a severe headache - it started exactly last school year. Everyone just said it was psychological. If it was psychological I wouldn't still have it because I'm in a better class now and with a better teacher. I still have recurring ear pain. My brother had similar symptoms to me, he only has back pain and I'm still plagued by the stupid headache. I was once told that it was a migraine, but I thought it was something else. The doctors also looked at the ears, saw nothing, were prescribed medication, didn't help, painkillers, didn't just help for a very, very, very short time. I can't concentrate well at school. Especially when I touch an ear it hurts terribly and the headache gets worse. My father, who works in the medical field, was always attracted to me. But I would like to finally know what I really have. During the holidays I had two really bad headaches that were almost unbearable. Many also say that it is caused by the current situation but that would not explain the earache, perhaps the headache. I've almost had the earache, I've just had such a severe pain in my right ear, it's still there but less than before, I'm going back what I actually wanted to write back, I've had the earache for almost three quarters of a year now the headaches lasted for half a year. The pain simply doesn't come from anything, it just happens at some point. What bothers me the most is that I don't know why I have the pain. Stop writing now before I get that bad pain again. Wait, I forgot to mention something else, even though I have a headache or other sensitivity to light. I hope that it will now be examined thoroughly and not just looked in the ear and told us that we can't see anything or blame everything on the psyche. I'm the only one who had such severe headaches - my father had migraines as a child. But for him it was more psychological, but for me I don't think so. I hope we finally go to a doctor and he can finally find out why I really have the headache. Kind regards and stay healthy
Bey
The best comment I've ever heard was... "You have a migraine, but I have a headache, that's much worse because a migraine only hurts in one place, but you have a headache all over your head"...what else can you say?
Hi, I once had a migraine and when it started I was talking to a friend on the phone. I then told her that I was getting an aura and would tell her when I was feeling well again. The next day I felt better towards the evening. I then looked at my phone again and saw that 10 minutes after I hung up, she asked me if I could send her something. An hour later she asked again if I could send it to her (I was still completely exhausted in bed at the time). I then wrote that I could send it to her but also asked why she was asking again if she knew that I had a migraine. Her answer: As if you hadn't been able to answer your cell phone until now, when I have a headache I'll send you something like that straight away. She still doesn't understand it ::(
Today I also want to write about my migraines.
I had just been released from the pain clinic and met my sister a day later, she said to me: I didn't know 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 23! At that time I was portrayed as a miserable wimp or also: “Don’t act like that.” (my sister) But even today my husband answers me: “I know that, my back hurts too and the pain is definitely a lot Worse from such a bit of a headache!” We have been together for 62 years!!!!
I've had chronic migraines for years, 15 to 25 attacks a month.
Fortunately, after a Botox treatment, which did not reduce the frequency of attacks, but did reduce the severity of the attacks somewhat, I responded very well to the triptans again. And I take it when I have a seizure, especially at night, so that I can show up to work smiling in the morning, because I enjoy my job, even if it is stressful, and because I'm honestly very afraid of a bad one have a seizure. I've been through a few of them and I'm not keen on repeating them. And I know all the comments, even from doctors - “You know that you are drug dependent, you should only take 10 triptans a month, that is drug-induced headache...” – Yes, I know that so many triptans are not great and I am always grateful for the rare pain-free days of several days – I don’t think about taking a tablet at all. Also the “well-intentioned advice”, for example from my boss “Have you ever thought about working reduced hours….” - a joke in my job, I just get less money, but I don't have less work - I've already been through it. Many people certainly mean their advice well, but I also notice that some people don't feel the pain for me because I go to work and am involved as much as I can. And if the hammer hits me during the day, I swallow my tablet straight away and hope that the pain remains bearable and goes away quickly so that I can continue with my everyday life. I really hope that the treatment in Kiel helps me, because go slowly I'm running out of options - not a nice thought.
My teacher (10th grade) always said to me
“you say you have a migraine, but you don't look sick at all” I cried about it more than once omg
My brother said to me this morning: “It’s your own fault” and grinned. (I'm 37, he's almost 41!)
Dear Marianne,
of course we those affected also know the motives of those who supposedly want to help, albeit in different forms.
The point is that this is not about understanding those not affected.
If necessary, look for your own community in which people write who are struggling with similar problems as you.
Maybe you can find help there :-)
Hello everyone
I'm writing here now from the perspective of someone who isn't affected. My husband has severe headaches very often and I hate to see anyone suffer. That's why I'm probably one of those people who's overzealous about helping. I sometimes ask something like: “Did you drink enough today?” or “Have you eaten anything real today?” To make him something to eat or tea if necessary. I have already bought him a book that contains exercises to relieve tension, especially because I know that he is often tense. There is no “instruction” or bad intention behind it. In these moments I just want to be able to help him in some way. Do everything possible to stop him being in pain so often.
After reading your comments, I am aware that such questions can be annoying as a person affected because, as it sounds, you get asked them very often. But I think many people are trying to get to the bottom of the cause for or with you in order to help you. I think most people don't realize that you don't need or want that or that it even annoys you. Inappropriate statements and stupid instructions are of course excluded!
Best regards
There is no worse pain for me than a headache. Actually, there are only a few days in my life where I don't have a headache. For me it's really just about the intensity.
I've currently been struggling with very severe headaches, migraine attacks and nausea for over 2 months.
Every now and then you have to rest for 1 to 3 days and then start all over again. At the weekend, when it's quiet, things slowly get better and better and by Tuesday at the latest it's pure hell again. This throbbing and stabbing in my head is just horrible. If it were just the “normal” headache but no. The heat (temperatures over 25 degrees), brightness, smells or physical exertion (e.g. climbing stairs, bending over, carrying something) only make the symptoms much worse. How do you still want to work smartly? There is no concentration anymore. During my current attack, I noticed that I was constantly dropping things. When I close my eyes I feel dizzy and start to sway. In these moments I just want to go to bed, cold air around me.
I usually turn on the fan and put wet cloths on my forehead and back of my neck - or sit in the cold shower for several hours a day. It's fine while showering - 3/4 hour after showering the problem starts all over again.
The nice comments from my superiors are that I should think about whether the job is suitable for me and I should ask my doctor whether I am even fit to work. Or if you don't feel like working, you should just stay at home!!!
My new (ex)employer made it very easy for himself and threw me out while reporting sick during the probationary period.
When I asked him why and why over the phone, he admitted that I wasn't at work and that I was on sick leave for 1.5 weeks. He doesn't need simulants in the company.
I'm not a hateful person, but I would like to wish someone like that just one really bad migraine attack so that they can feel for themselves what kind of hell is going on in their head.
I suspect all the artificially provoked stress and time pressure from my superior is the trigger for my current migraine.
Before this theater started, I was able to do the work quite well. I have often noticed in the past that after a lot of stress, anger and time pressure, attacks are more frequent than calm times. This not only has something to do with work but also in private life. When things get too hectic and stressful, the headaches start slowly and keep getting worse. Often alone when there are too many people around me. When I have to take the train, I have more migraine attacks than when I travel by car.
Now I can think about whether I can go on our 3-week annual vacation in a month. There will certainly be discussions with the health insurance company :(((
I've been able to listen to all sorts of things over the last 35 years.
Almost everything listed by my previous writers seems very familiar to me. Medical officers from the MdK are always very “understanding” and will write you well on the side.
The last MdK doctor gave me the good tip during the examination to please sit down. If I were to fall over now, then he would have a problem... - because my investigation had already started without me and had already been finished without me and all the reports were already written and ready to be sent. My personal appearance only took place because I “should be examined”. What else can you say or think about that??? Luckily, my family doctor didn't allow himself to be misled by such a quack and continued his treatments.
Changing your diet... for food allergies, ulcerative colitis and chronic diverticulitis is also very well-intentioned advice, where I just turn around shaking my head and leave without comment.
Or get some fresh air and do more exercise... where you have allergies from the end of February to the end of October.
and then it always means that you only have excuses for every “solution”.
Go to a psychiatrist, you don't have all the cups in the cupboard, you're a malingerer!
At some point I gave up listening to such things or giving anything away. I just keep saying that they should be happy, that they are sooooooooooooo healthy.
What kind of medication do you take when you get headaches or migraine attacks?
I now get my medication 2 to 3 times a year in Holland because they are much cheaper there and then I mix them up myself. I've had pretty good experiences with them.
I either take up to 1500mg aspirin, 1500mg paracetamol and 150mg caffeine daily
or up to 2400mg ibuprofen and 600mg caffeine daily.
From the time I was 17, I also took tramaldone for almost 20 years, but that can't be the case.
The problem becomes when you completely give up caffeine from one day to the next.
The following day will be pure hell!!!!! For this reason, after the painkiller therapy, I only take pure caffeine tablets and reduce the dose down to 0mg every day.
When I don't have to work, I try to get by without medication.
What sometimes helps me is to drip a lot of peppermint oil on my head while showering (very hot water). I don't know if it's my imagination but sometimes it helps me. Especially on hot days. Afterwards I feel cold and better. Ice packs on the neck and forehead and plenty of rest.
Maybe there is someone who this could help too!!!
Peppermint oil is not that expensive and almost everyone has a shower. You can also add a whole bottle of peppermint oil to a hot bathtub. I got the tip in the hospital during my time in the army and from then on my peppermint oil consumption was quite high ;-)
I have a GdB of 40. “Cervical migraines” only account for 10 points.
For me that is incomprehensible. Due to my many different illnesses, I was on sick leave for at least 2 to 3 months a year.
The highlight was in 2013, when I was on sick leave for over two years in a row and then it ended in a cure and incapacity for work.
Application for aggravation at the pension office = rejected!
Objection = rejected!!!
What do you have to do to get more GdB points for migraines that really reflect the restrictions on daily life???
I wish all migraine sufferers as many pain-free moments as possible!!!
A saying from colleagues after I was on a drip in the hospital because I couldn't stand the pain anymore: "It's your responsibility to drink enough in such weather."
Hello, I have had AURA migraines since I was 5 years old. I was 14 before I knew it was a migraine. (No pediatrician, a psychological stay at the Herdecke Clinic in the anthroposophical ward, nor an EEG, etc., resulted in the diagnosis) “It” was always just called “visual problems”. Associated with this at a young age was numbness throughout the body and vomiting. A friend casually said, “Oh, I have that too, it’s a migraine.” I'm lucky because I don't have a bad headache, just a slight throbbing pain on the other side where the aura was. I can't determine triggers, except that as a child when I was particularly looking forward to something, e.g. B. Trips usually had several attacks that day and the trip was over,
I just had another AURA attack and can now write again - I can easily hide the 25 minute duration from colleagues.
As a graphic designer, the attack obviously limits me a lot. Since I've gotten older, speech problems and a bit of confusion tend to occur, which worries me - especially when you read that migraine sufferers are more prone to strokes.
(I am now 49 years old). I've never had to take medication for this and am grateful to only have the aura attacks. I don't keep a migraine diary because I can see the very small signs, usually a tingling in the fingertip or tongue, etc. and sometimes particularly clearly - only when the attack comes (every 3-4 months). I once had an extreme series of attacks when I took intestinal bacteria, which was supposed to be total nonsense. After stopping, nothing more for a long time. When I started exercising again (Airobic), it started right after training, but I blamed it on the loss of electrolytes (add magnesium).
And of course I know this from my experience when people talk about migraines. What's wrong with that - changing your lifestyle, detoxifying, changing the weather - blah blah blah. I'm glad that migraines are finally being talked about as a neurological disease.
To everyone affected – all the best to you and hopefully more pain-free time
PS: Book tip: novels by Oliver Sacks
Hello to all migraine victims.
I have been reading the entries for several hours about how people like us are all doing more or less and what we have already experienced.
I'm 59 male, so I'm in the minority, and I've been suffering from one or more forms of migraine for more than 33 years, I can't remember it exactly.
I think the last time with my family doctor before the migraine was diagnosed was the worst.
I always got along well with my doctor, even today in his well-deserved retirement, we got along. I said to him back then, “Do whatever you want with me, I can’t do it anymore, I don’t want to live like that anymore”. He said to me very carefully and worriedly, “I'll think about something, come back to the consultation next week or the week after.” That said, my doctor recommended that I see a pain therapist.
I got your name, address and phone number and made an appointment. I saw a small group practice, lots of new faces and lots of new misery.
Nice staff and the doctor was also very open. I had to write down the questionnaire and my career as usual. Then many tests that were unknown to me followed. Several appointments and new medications, the first attempts at Profilaxe and my first “Kiel headache calendar”. After further appointments and first attempts to get to the bottom of the matter, there was no improvement, which I also told the pain therapist. Then he said I should try another medication if necessary (Maxalt Lingua), my first triptan, which everyone will have had before. When the next attack appeared, I took Ritzatriptan for the first time, after 20 minutes my head was calm again, I couldn't believe it.
At the next consultation I proudly confessed how the medication worked very well, and the doctor immediately told me it was a migraine. This brings us full circle. My mother had these similar headaches from the time I was born, which became noticeably less severe with the menopause. She was never diagnosed with migraines. Over the years the effectiveness has decreased, I looked for a neurologist to try new approaches, which unfortunately wasn't completely successful. I found, read and continued searching a lot on the Internet about Tehma migraine.
Until I came across a reference years later, the new term was “Botox”.
By now the attacks were so frequent that the tablets prescribed to me were no longer enough and I started to get more.
I then got an address in Berlin at the Caritè and got an appointment after a lot of back and forth because it wasn't that easy to get an ice transfer because only following the sequence led to success.
Had an appointment and a referral, so everything from the beginning, questionnaires, old doctor's letters and findings etc. then another appointment at the Charitè in Berlin, over 130 km away.
My hope for quick help and relief quickly evaporated, then after several appointments the doctor prepared and carried out everything for the first treatment with Botolinium. As already mentioned above, in the same places with very unpleasant pain when puncturing under the very thin skin the areas at the hairline and down to the shoulder. It didn't bring any relief until about 3 months later. I was then referred to another neurologist who was present at the next consultation and took over further treatment.
A lot was explained to me about medication overuse. I always kept up the headache calendar very well, but then it was explained to me that I was taking too many triptans a month to combat the many attacks.
I should relax without any painkillers for a while. That was the WORST TIME I've ever had to experience, the time was extended from appointment to appointment, with the hope that it would be over next time.
In the end it added up to 3/4 years. When I presented this message to my family doctor and my neurologist, I was immediately told that if there were days when I was more able to work, I would just have to call and I would be given an AU certificate, which I do despite regular appointments for care had to be claimed. Sometimes things got so bad for me, I sometimes stayed in bed for two days, in complete silence and darkness.
I also told my employer about the very difficult torture of COLD WITHDRAWAL and they accepted it. Before and after withdrawal, I also tried various drugs for profilaxe, which had good results at times, but nothing lasts forever.
Then came the second attempt with Botox, which had moderate success over a period of more than a year. I was told that it was a success if I had 1/3 fewer attacks or days with head pain. Which suddenly meant another change of doctor in the same place. For me it's nausea, vomiting very rarely, but more often I'm afraid of light and noise.
When you have a cold, you can't stand the headache; there's no remedy at all, which is why I use the term headache deliberately. Then the tinnitus, which I have had for at least as long as the migraine, is unbearably loud! I try not to take the triptan more than the aforementioned 10 - maximum 15 times a month because I know exactly what can happen to me again.
I am also on the list of candidates who would be considered for the use of the new “CGRP antagonist”.
It's not my turn yet, so continue as before with antidepressants for Profilaxe and Tripane.
So to everyone who has to experience something similar.
Hold on.
We don't need well-intentioned advice, we know our stuff!
Greetings Jörg
When I read this, I think that I was incredibly lucky with my doctors.
My family doctor - unfortunately now deceased - made a clear diagnosis after the first 3 attacks and sent me straight to a neurologist who was familiar with migraines. I was 12 or 13, I can't remember exactly.
I always felt like I was in good hands with my doctors and the medication (Maxalt and a beta blocker for prevention) worked wonders. Thanks to the beta blocker, I had about 1-2 attacks a month for 5 years instead of 2-3 a week.
Unfortunately, the migraines when I was 19 turned out to be a particularly bad kind of curse when I was hospitalized after 14 days of continuous severe headaches and more than 2 months of nausea and vomiting. Immediately after mentioning that a migraine disease was known, it was said that it was a migraine and that you just had to get through the pain. This was then tried on an inpatient basis. And because I “only” had migraines, the mandatory examinations (EEG, MRI) kept being postponed. Until after several days they finally did the MRI and told me I had a stroke - misdiagnosis. It was a sinus vein thrombosis. Not much better.
Since then, I have only trusted my well-known doctors and am always very skeptical, especially in hospitals. Unfortunately, since then I have also had chronic headaches and, on top of that, regular migraines.
I have a lot of support from my family and friends (unfortunately there are always a few exceptions) and I am grateful that I receive so much support.
I wish you all the best and lots of strength and perseverance
Barbara Scott-Hayward December 26, 2018 at 5:25 a.m
After a largely sleepless night, I went to the PC – because of the migraine.
Sometimes it helps me to read something boring. I am a social worker by profession. One of my superiors said to me: “Yes, yes, the thorough ones, the compulsive ones with the migraine attacks”. I couldn't answer him anymore.
My fate is as follows: as the daughter of a mother who suffered from severe migraines, I saw as a child how I used to feel.
And yes – my period started at 12.5 years old and hurray – the migraines came along with it! More or less I suffered through a similar ordeal with an understanding neurologist who wrote countless EEGs of me.
What happened to me 2 years ago is the pinnacle: one Sunday afternoon I fell out of bed and had 2 epileptic seizures.
In the hospital I have another 3-minute one.
I experienced an epileptic seizure - I was scared to death. When I could slowly think again, I had bed rails!!! at the bed and was no longer allowed to go to bed or shower alone - the illness is too dangerous!!!! My experience was completely different: I had the distinct feeling as if “dross or rubbish” had been removed from my head. My memory, which had been declining since I was 40, came back to its former glory. However, I still have migraines and suffer from them about 6 days a month.
Like all of you, I need absolute peace, no smells and, if possible, a lukewarm bath - several times a day, I take antispasmodic suppositories, then my stomach isn't so stressed.
Unfortunately, like so many of you, I have heard brainless comments and idiotic advice from many doctors. The better you know your body, the better you can help it!
All the best to everyone affected – DO NOT let stupid comments get you down!
Hello, thank God I am rarely affected by this scourge of humanity, but it is so severe that it usually takes me a whole week to get back on my feet.
Migraines can be triggered, promoted and promoted by such a large number of causes that I am sometimes very happy when someone comes up with a new suggestion. It has been my experience that it is an attempt to show sympathy when people hear reports about miracle healers and miracle medicines. It is important to “describe” the indescribable pain to those around you, report on scientific findings and also support the sentence “I have a migraine”. The white and gray mass is something so complex that neither those affected nor the researchers should simply summarize it in one word.
Hello everyone,
I have been suffering from migraines for about 20 years. Not so often at the beginning, but for the last 10 years around 15-20 attacks a month. I'm also still employed. I've tried almost everything. 5 treatments, acupuncture, cupping, almost the entire pharmacy, unfortunately nothing helped. Then the cardiologist wouldn't allow me to take migraine tablets because it wasn't good for my heart. I was on the verge of despair until I found a really great neurologist. After various tests, he started injecting me with Botox. Has been paid for by health insurance companies since 2009. I get Botox injected into 31 areas on my head, neck and shoulders every 3 months. The result: I have had about 85-90% fewer attacks since then. I can only recommend.
Like all of you, I have received and continue to receive “all-knowing advice.”
:-( I've had migraines for 19 years and what can I say: it pisses me off!!! Always these disbelieving looks when you have a headache again
and the comments: it's not that bad today, because my colleague knows better when I have a migraine than myself!!! Outrageous and ridiculous. I sometimes just lie in bed and cry out of frustration and pain. Now
I'm in my mid-40s. So I still have a few years ahead of me. The only one who has me My husband takes me 100% seriously.
I sincerely wish you all as few seizures as possible.
A doctor in rehab shot the bird for me. During the conversation I mentioned that I find it very strange that the rooms are so noisy and unfortunately there is no way to darken them. Which is absolutely necessary for me during a migraine attack and after all, one would specialize in migraines. I would also miss a quiet retreat. Ergo….everything is far too restless and too loud for me.
His answer: Then go to the spa gardens. Then it would be quiet.
Well, it's just a shame that running isn't my strong suit when I have a migraine attack and I'm happy if I can get to the toilet without making any mistakes. And shadow = dark doesn't make sense to me either.
He really had an idea! Unfortunately, he wasn't the only doctor who said such stupid things. After this rehab you were really sick.
Oh yeah, these are all really great “tips” against migraines.
Soon I won't be able to hear it anymore either. I inherited my migraines from my mother and have suffered from severe migraine attacks for as long as I can remember (i.e. from the age of 4, maybe even earlier). I did EVERYTHING, went to so many doctors, tried all the medications. Nothing really helps 100%. As soon as I drink a beer or smoke a cigarette, I constantly hear that it's "no wonder" that I get migraines.
Sure, I'm a serious alcoholic because of a beer on the weekend. >:( Especially since I didn't drink or smoke when I was 4 years old! It's amazing how these people think before they speak.
I hope for all of us that there may soon be really useful remedies that will make our lives with migraines easier or even relieve us.
Until then, all the best to you :*
I am now in my early 50s and have suffered from migraine attacks since early childhood. Of course, I also know all the stupid comments, insinuations and oh-so-wise advice from people who have no idea.
What I found best so far was the statement from an esoteric aunt: “Your migraines could be punishment for being a bad person in a previous life.” Okay, if that's the case, then of course I deserve the torment :-D.
Hi everyone.
The latest bullshit bingo comment on my migraine was: you also look at your cell phone a lot, it's such a small screen, you have to worry about tense eyes blah blah blah... Which is complete rubbish, because the last attack started with a lush jagged aura outdoors, at the edge of the forest, at a pond and we loaded a canoe onto a trailer. “Tight eyes”.
That tops some classics. What's now annoying about "my" migraines is that I'm pretty wobbly, dizzy, weak, queasy for up to 3 days, even if the headache (or pain behind the eyes) has already stopped. I can actually do something, but only on the back burner. Curiously, what helps me is diclofenac. For whatever reason. The seizures used to be “sharper,” more compressed. I've had this crap for 34 years, luckily only 6 to 8 times a year.
My migraines started when I was 18 years old.
At that time I “only” had headaches and one eye that was constantly watering every few months. At some point the attacks became more and more frequent, now accompanied by nausea and vomiting, visual disturbances (but no aura), loss of appetite as well as sensitivity to noise, smell and light, as well as extreme irritability. In very serious cases, there may even be tingling and numbness in the extremities and face, severe cramping of the fingers and speech problems. I'm now 26 years old and had a whopping 23 seizures last month (average is 15-20 seizures per month).
Of course there is also a significant overuse of medication, but I simply wouldn't be able to cope without it. Every second is torture and just the thought that an attack like this can last 1-3 days without pills drives me crazy. Especially with my job with a 40-hour week, I can't afford it if I have an attack omit the tablet every now and then. After taking it, it usually takes 2-4 hours for my head to feel somewhat “normal” again. All the prophylactics tried so far, such as beta blockers, antidepressants and dietary supplements (Migravent), did not work.
And then you hear such incredibly helpful comments from colleagues or acquaintances:
“Are you drinking enough?”
“Have you ever tried homeopathy?”
“Have you ever had a massage?
“You probably just have tension that triggers it.” “I also sometimes have a headache, then I take an aspirin, lie down for half an hour, drink a coffee or a cola, and then it goes away.”
“If you haven’t tried treatment xyz (usually homeopathy or other alternative methods), it’s your own fault that nothing changes.”
“Fragrance oils are supposed to help really well!”
“Change your diet or avoid certain foods.”
Just to give you a small excerpt of the great advice and comments.
Often I don't even dare to name the illness because then so many prejudices arise or migraines are equated with headaches. Also good: Many people who just have a headache think they have had a migraine before and know exactly what it is like and shouldn't act like that. It's nice how society manages to sometimes make you feel really ashamed of your illness or even blame it! It's sad that migraine sufferers are often laughed at. Sometimes I think it would help to rename the disease.
My life now looks like this: I hardly do anything besides my job because I often have to rest from an attack after work. I usually get them in the evening and on weekends. Sometimes right after getting up in the morning (nice to start a working day like that). I don't smoke and I now drink so little alcohol that I can count my annual consumption on one hand (I even forego just a glass of champagne to toast). I'm only in my mid-20s and can't enjoy my life nearly as much as I would like and as my friends do. I used to enjoy going out to parties, but now I always think carefully about whether to go and then usually decide not to go. Very few people understand how much life and leisure time can change as a result of migraine disease. 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 leads to significant attacks. So often I find myself listless and exhausted by the smallest things. Not to mention the household budget, which is often left lying around and then keeps piling up.
In addition to the pain, the loss of quality of life and society's lack of understanding make the illness unbearable.
My blessing in disguise: My mother has suffered from migraines since she was a child, which is why she has now taken early retirement in her early 50s and has a severely disabled certificate. Although I wouldn't wish this illness on anyone, at least I have someone in her who completely understands and supports me.
My entry is now “a little” longer than the others, but I just had to get it off my chest or write it down!
My stay at the Kiel Pain Clinic is finally coming up next month and I'm looking forward to a supportive environment without prejudice, new input and hopefully a little improvement...
Much strength to all those suffering out there!
A recurring question: “Are you drinking enough”?
How should I answer… “No, I’ve had migraines for 15 years because I don’t drink enough”?!?!
What nonsense. Or also very popular: “It’s because of the weather”.
I have had migraines since I was 8 years old. Now I'm 55. The intervals have steadily increased and I'm up to 17 attacks a month. A normal life is hardly possible. I've tried pretty much everything in terms of diets, relaxation exercises, pain clinic stays, psychotherapy and medication, without success. Of course, I know almost all of the nice advice mentioned here. What hit 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 onwards, and on the day of the birth I promptly had my first migraine attack again: “I'm happy about that If you do, then the migraines will probably go away after the menopause!” Great, I still don't know if that's true!
Also very “helpful”… just eat an apple, but it has to be green!
or also: ...let a little cold water run over your arms and it'll go away immediately!
I tried it (the devil eats flies in times of need), but what can I tell you, it doesn't help!!!
My favorite though is when the pain comes, just let it go… haha
Thank you for the article and your comments. I would sign everything like that.
The best saying I got was:
“Do something about it, it can’t go on like this. No matter what it costs"
You just want to scream!
Hold on.
Having had migraines for about 30 years now, i.e. since my youth, I have heard almost everything that is so accurately described in the comments.
One of my favorite sayings - no, I'll reveal two: You know that you can get rid of it with the right breathing, right?
You're breathing too shallowly! and
you have to face your illness positively, it teaches you something.
The only thing I've learned is to control my aggression in response to such sayings!
Thank you all for sharing your stories.
To those who suffer
I've been keeping a diary for months.
My attacks (2-4 per month) often begin when I am confronted with decisions made by my inexperienced boss, for example. The nagging pain in my head keeps increasing, the nausea increases, the eye pressure increases, the vomiting begins and then the weekend is over.
My family doctor:
“You have the problem – you also have the solution. Try to interrupt the automatic thought processes that trigger the migraine.”
He just didn't say how it works. I'm now approaching 50 and I'm very annoyed at the loss of precious 3-4 days of my life every 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 them.”
Great, now I also have a guilty conscience...
Hello, my dears!
I've been suffering from migraines for 4 years now, which for most people wouldn't be considered long. At first it was said that it was definitely due to puberty and would most likely stop once I turned 18. Now I'm turning 18 in 4 months and lo and behold; my condition has not changed.
When I had my first migraine attack, I didn't know what was going on and ignored my intense aura while trying to read a book.
After these attacks became more frequent, I decided to go to my family doctor and have myself examined. I didn't think about the fact that I might have migraines; at the time I didn't know anything about it. This doctor mentioned didn't know what to do and sent me to a neurologist, with whom I only got an appointment 3 (!!!!) months later, after I had another 3 attacks. During this test, tests were carried out on me, brain waves were checked, etc. You probably know that. Result; no findings, everything normal. A debriefing took place after the examination, the doctor said that I should please 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 noticed that I had a migraine. She first prescribed me migraine therapy in the form of tablets. When this didn't work, sumatriptan came, which unfortunately didn't help me either.
Now I don't even have any tablets or anything for migraines anymore because my doctor doesn't prescribe anything for me anymore because I'm apparently resistant to any anti-migraine medication.
It's cruel and it's not getting better, last year in April I had the most severe migraine attack after my grandfather died. I still don't know if it was because of the high emotional pressure or the fact that I'm no longer receiving treatment.
Already checked for tumors and clots in the brain, but nothing found.
My life is so hard because of the migraines. I have a lot of absenteeism that I never normally had. Of course this has an impact on my certificate, I'll be doing my Abitur next year and I'm terrified of having a seizure, because that's exactly what I had in my math exam at the secondary school 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 find it cruel that people who don't know this pain dare to judge us with fits.
Stay strong, you can all do it!!
My top idiot reactions are still these two:
– “Well, drank too much again?” (I had a reputation as a drunk at some point during my school days. If I ever dared to go to a party, which wasn't particularly often, the exertion (dancing, etc.) often triggered an attack, which got so bad very quickly that at some point I had to look for the toilet and throw up, even though I had only drunk water all evening.)
– “This is clearly from your many tablets. If you ever take a single pill again in your life, it will be your own fault. Stop it immediately and completely.” (Quote from a neurologist(!) after she looked at my headache diary for a solid three seconds. At that time I had around 7 days per month on which I took medication, usually 1-2 paracetamol due to a lack of alternatives. An alternative treatment Unfortunately, she didn't suggest it. She ordered an MRI, and when it was normal, I didn't even get a follow-up appointment with her - "You have nothing.")
I have also suffered from migraines since I was a teenager.
I am now 38 and my migraines have also changed. I used to “only” have a terrible headache and was sensitive to smells and light. Lie down, sleep and get up again healthy. Today an attack lasts at least 24 hours. If I get up with a headache and the painkiller doesn't work, then I already know what the rest of the day will look like. If I try to hold on at work, then I start to breathe differently, which causes my hands and feet to fall asleep and even to the point of total cramps. If I continue, the next bowl will be mine. On a day off, I try to do something around the house very slowly and listlessly. It just doesn't work and before I have to throw up, I'd rather lie down in bed with the window open. And then sleep, sleep and sleep some more.
My previous employer once said to me when I asked again, whiter than a wall, whether I could go home...well, because today is Wednesday.
I had migraines every month on Wednesdays for a while. My colleague was totally annoyed at the time... Man, finally get yourself checked, that's not normal.
One of us always has to step in. Wow, that made me lose my temper because she had already said something like that. Yelled at her to see if she thought I hadn't already done that and was getting a migraine on purpose. I would be happy to pass it on to you. After that there was peace. Other colleague...you look really like shit, like you've taken something.
Imagine, the way I look is how I feel.
Or even better are these checks during the break to make sure I haven't smoked one. Man, this is really annoying. When you have a migraine, you don't want to smoke, or you try it, only to have it go off again after one puff.
The headaches eventually subside, what remains is this terrible nausea in the stomach and head.
I always say my stomach doesn't get along with my head at the moment. Regarding smell sensitivity...once I had just changed the beds and then had an attack. Luckily I still had the old bed linen in the laundry bin. That freshly laundered, fabric softener-smelling bed linen made everything worse. So put old bedding back on. ????
Chronic migraines since childhood.
Only dolotriptan, i.e. sumatriptan and almotriptan, work in high doses if taken early enough, but the side effects are bad and have destroyed all of my organs. But I would rather have stomach pain, kidney pain, etc. than the pain of migraines. Although I think a new word needs to be created to describe the cruelty of this feeling. “Pain” just isn’t enough when you think about dying to get rid of that feeling. Yes, and now those not affected are thinking: “omg, how exaggerated”, but my fur 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 gets you into trouble professionally because people who are selfish, incapable of empathy, and less well-off simply judge you. If someone told me, “Work twice as much as other people and you'll never have a migraine again,” people, I would work THREE TIMES as much, just out of gratitude and joy in never having to endure that horror again!!!!!!!! !
Much strength to all fellow sufferers, we are apparently not as alone as we often seem!
It's frightening when all those affected can share a common, negative experience with one another. Why is it so difficult to accept migraines as an illness that's "not to be laughed at?" Don't we suffer enough during the period of attacks?
I would rather listen to a stupid saying every day than constantly take tons of medication in order to be able to lead a somewhat normal life. I, too, have suffered from migraines since my early childhood. My ears had to endure a lot because of them. But my bad luck was that I found the wrong doctors.
The trust in doctors had a huge impact on my life. I felt let down.
The best statements from doctors
Come by if you have a migraine attack and we'll see if I can help you.
The other doctor didn't believe me because he couldn't imagine that I not only suffered from migraines, but also had normal headaches. So he gave me a medication that unfortunately triggered a migraine attack, which wasn't planned. His words on it
Ohhh now I know you have lice and fleas
Just happened to snow in here… Just thank you!
I've had migraines for about 30 years.
Initially a few times a year, more frequently in the first pregnancy, after the birth hardly any more, and massively decreased with the second child. That gives hope for change. It was only with the triptans that it became bearable. No, almost good. Because as long as the effect lasts, I am pain-free. I know the great tips from others all too well, although I hear them a lot more because of my sun allergy.
My classics are “ignore” and “toughen up”. I think all chronically ill people are familiar with these comments.
Hello fellow sufferers,
finally a site and like-minded people who take you seriously.
Thanks for that. I can also give a few “nice” comments that I have to listen to again and again, for example: You have to do more sport / You have to toughen yourself up more so that you are not so sensitive to the weather and your hormones become more balanced / You have to do better switch off from stress / or even better: finally have your head examined, that's not normal, maybe you have something in there. Great, that really builds you up. And to be honest, after repeating these “tips” over and over again, I’m starting to get a mad attack, but not a migraine attack. Warm greetings to all those affected and thanks to the pain clinic that offers this page on this topic.
Dear fellow sufferers,
It's good to read all your comments and to know that you're understood, you speak from my heart. The world outside has little or no understanding of this. No one can understand this devastating pain who hasn't experienced it themselves - they simply can't know any better.
Lustig recently visited the employment agency's medical service again, after which the report of course only said "headache", despite a comprehensive description of the disorders that occurred and a multi-page cover letter with corresponding descriptions of the illnesses. I'd rather not say anything more about that. But that is exactly the perception of the so-called performance society in which we live and have to function. It's actually ridiculous, if it weren't so devastating, but as a chronically ill person with a variety of complex illnesses, the employment office can of course see migraines as just a headache, because so many different (perhaps also related?) illnesses can occur No single person (may?) have it. But since it was about the bigger picture anyway, it didn't really matter to me in the end, I'm not able to work at the moment either way, so why bother fighting about the migraine - I'm not laughing!
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 fortunately it still exists. I can only say I'm lucky that I'm not feeling as bad as you.
But I can probably prepare for something worse. I've had migraines for maybe about 5-6 years. The first time I thought I was having a stroke, speech problems. Luckily it hasn't happened again until now. Otherwise I have an attack 3-5 times a year. I'm 48 years old now. And it's annoying as hell... I try to live with it. I also have a kind of diary, well some pieces of paper that are just lying around, they are now written all over the place, in the shop, at home, sometimes I find one by chance and think, Aha, that's how it was back then. You don't have something like that ready right away when you do it three times a year. The only stupid thing is that I don't know what was going on in the days before, what I ate or what my day was like in order to possibly find factors that could promote the migraine. I don't think it's that extreme for me so far. After half an hour, despite the headache and nausea, I can do my work again to some extent, but of course very reluctantly. I actually don't feel like being in such a state anymore. But I know some of you will now say 'lucky you'. I haven't received any stupid sayings yet because I've always been able to hide it well and I also have fellow sufferers among colleagues.
For me it's definitely hereditary on my mother's side. She also got it at a young age, I'd have to ask how long she's had it. The only attack I was able to cope with really well was once before going to bed. Suddenly I had a visual disturbance (aura) and it was immediately clear what was coming. Nausea was already noticeable. So I quickly got ready and lay down and quickly fell asleep. I don't remember having any problems the next morning, maybe it was so slight that I didn't even really notice it.
I'm excited to see what's next for me.
I wish you all all the best. Thank you for sharing your experiences here.
Greetings
Andreas
PS Since my last attack, about a week ago, I have always had slightly 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 kind of comments are thrown at you... Here are a few excerpts
-Family doctor: If you finally get pregnant, then the migraines will go away.
(Unfulfilled desire to have children for three years, multiple ICSI with miscarriage.) -Gynecologist: No, that's not a migraine woman...!
There are no migraines during pregnancy, they go away. Headaches and nausea are really nothing special in the first three months. They have to go through that, just like all other women. -You are too skinny.
You need to eat more fat. Then you won't have any more headaches! -Why do you always lie down, go outside for a walk and sit in the sun.
The sun draws the disease out of your body! – I know that when I drink too much, I also have a headache and feel nauseous.
It'll pass again. - There are worse things.
Be glad you don't have anything else. -If you have a good drink, you won't feel the migraine anymore.
-You are the master of your body. If you don't allow the migraine to happen then it won't come...
I could go on and on... I just can't understand why migraines are still laughed at from all sides. If I said, hey, I have chronic recurrent inflammation of my brain vessels with terrible pain, nausea and symptoms of a cerebral infarction... what would the reaction of those NOT affected be?
I have chronic migraines... Thanks for this good article! I've already forwarded it to everyone in my immediate surroundings :)
Here are my experiences:
– why didn’t you go to the private doctor in Buxtehude? You would have been healed long ago by now.
– don’t always take a triptan, you can do without it and function without chemicals!
– Do you realize that the triptans are the reason for your constant migraine attacks?
– massage your neck for an hour, I always do that and then the pain goes away!
– Don’t always think so much! You have yourself to blame for your pain!
– It can’t be the case that no doctor can help you! After all, you just have a headache!
– Just try to ignore the pain!
– When the pain comes, accept it and let it move on!
– high doses of magnesium would heal you!
– your hormones are to blame!
– that you always have to be annoyed about everything! It's your own fault!
– Are you in pain again today?
– there is a healer in Switzerland who would heal you with acupuncture! He says he has done this many times!
…… And and and :)
Hello, I know two other people in my environment with migraines, otherwise I felt rather alone with it.
Interesting to read how many others feel the same way. I've had migraines since I was 8 years old. Back then, about every three months. Once a month since I was about 20 years old. I am now in my mid-40s and have integrated the reliable episode into my life. “My migraines” almost always last exactly four days. The day before the increasing/shattering headaches start, I really feel like shit. I argue and think almost everything is stupid, I prefer to be alone. And I feel like I just need to have a good cry, but it never works. The next day the headaches begin, which increase over time despite medication. Triptans help best, the pain remains slightly weakened and all the accompanying symptoms. These are a basic depressive feeling/feelings of inferiority, low resilience, severe lack of concentration... And the severe headaches. I work in nursing, so I have to take regular sick leave. Because physical exertion makes things so worse that you become an “imposition” on those around you. Then I just feel so bad that only trusted people should see me like that (family for example). I also have a craving for carbohydrates.
And also this strange euphoria after the migraine episode that I could tear up trees. And I'm just glad it's over. I don't receive any derogatory comments from my family, friends or my employer. I also hear stupid sayings from people, but rarely. I'm giving the middle finger because that's stupid. I don't justify myself there either. Thanks to everyone who spoke so openly about the topic and “their migraines”.
Over the years I have learned to accept “my migraines” because I can't prevent them anyway.
When it starts, I look at the calendar and cancel everything that isn't a top priority for the next three days. My child is now a teenager, so I hardly have any remorse anymore because I don't function well. I get support there. Yes, that's all I can think of right now. Best regards
Hello, my dears,
So my favorite NO-Go sentences are still:
– Don’t act like that because of a bit of a headache
– Change your job and the migraine will go away (quote from the doctor)
– Why don’t you eat/drink champagne/ Cheese/chocolate/cocoa and more of it won't give you a headache
- just don't be so sensitive to the weather
I wish you all a lot of strength to continue dealing with your migraines
Hello.
I'm so happy to find like-minded people!
I had five migraines with and without aura when I was 12 years old. In addition, nausea, sensitivity to smells, light and noise and even downright seasickness. My parents just thought I was imagining it and trying to make it important.
Even today, little understanding is to be expected, it's really bad at work, but it's hell having to work in this condition with loud equipment and having to work physically hard.
Even though you shouldn't wish bad things on anyone, sometimes I just wished these ignorant people a three-day episode with all the trimmings!
Maybe then they will understand that sticking a finger down their throat is not perverse, but is simply intended to relieve the unbearable pressure.
Sorry, I don't want to complain, luckily the episodes have become fewer over the years, only 3-4 a month, but the behavior of "smart" people who aren't affected always upsets me!
Thanks for listening and I wish everyone many pain-free times, greetings, Tina ????
It is a scandal what people with this disability have had to experience in their lives and still have to.
The mere fact that on a feel-good day I can hardly believe how I feel with a migraine makes me lenient with the lucky people who were spared from this illness and cannot understand how it affects their entire life.
My first experience as a 10-year-old with my family doctor at the time was diagnosis and treatment in a single sentence:
“Once you get married, it’ll go away.”
After 48 years of the odyssey, the last comment from my current family doctor: “When will this finally be over!”
You need nerves like steel cables.
Still hopeful and with her head held high,
wishing you health and success
Marianne
I could have cried reading all of this - I feel the same way.
I've had headaches and migraines since I was a child, I'm now 52 years old and I've heard all the more or less well-intentioned advice. My mother also suffered from it, but at that time her friends, colleagues, family, etc. had much less understanding because the topic of migraines was not at all publicized. It really hurts when people don't take you for granted and simply don't believe you - go to the chiropractor / try this alternative practitioner / have you ever tried this diet / distract yourself with it / I I know an angel healer / what kind of head do you have, that doesn't exist / after the menopause it's gone / you just have to do some exercise / go get some fresh air / drink more water / you just have to Drink schnapps, then it will definitely get better / get drunk, then at least you'll know why you have a headache... etc etc I've been being treated by a doctor who practices TCM for two years now and treats me weekly with acupuncture and special herbal tinctures treated - the migraine attacks have become fewer, perhaps due to my age and the onset of menopause, but for example when the weather changes, stress, anger, or I go to bed late, I still have migraine attacks, which always last for a few days.
I am very grateful for this site - it makes you feel understood and not so alone anymore...
I've also been able to listen to a lot...
– Drink more water
– Eat/drink something with sugar that gets your circulation going again
– Your migraines are definitely of psychosomatic origin, you have depression
– Have you ever tried acupuncture?
And a lot more, but these are the most common statements.
For me, the attacks started when I was 8 years old, but the attacks only became much more regular after I started taking “the pill”. Unfortunately, the hormones often contribute to making migraines worse.
I have suffered from migraines for 16 years now. I suspect that my attacks also have a family 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 count on when I have a seizure. Like most people here, I am only laughed at reproachfully by my employer. Family and friends accept my illness and they can't change it.
Migraines also often limit me, I rarely have attacks that make me vomit (maybe 3 times a year), my attacks consist of light, noise and extreme sensitivity to smells, severe nausea and massive restrictions on movement. In addition to the symptoms, there are also significant sleep disorders so that the attacks can last for several days if I don't get enough sleep and rest.
To all those who suffer: Hopefully one day people will be able to understand us, but it is good that we understand each other and can understand our complaints.
Stay strong !
I'm rarely taken seriously with migraines. The migraines often come on the weekend, which is why I can't go to parties etc. The best comments are that I have become such a bore. Or you always have something... if you concentrate so much on the pain it won't go away. How are you supposed to distract yourself from such pain? Then I can only lie in bed and not talk and I feel bad enough as it is when everyone is out and about and I'm just sick two days a week. Even doctors don't take you seriously. Tips like you have to drink enough come from people like this - really unbelievable.
Comment from a senior doctor in a psychosomatic clinic as part of a lecture on psychosomatics: “Migraines, for example, are an expression of anger - suppressed anger causes headaches” - heard in December 2017. But you're already used to all that, the lady should have further training maybe do... A MERRY CHRISTMAS EVERYONE…. and if it's too much for you, step back for an hour.
When you come back to work after a migraine attack, it's nice to hear: "I'd like to have a migraine too, then I could stay at home for a day."
It's so liberating that you get understanding here.
I mostly get tips from older people: -Speak less on the cell phone or TV -Go to bed earlier
. My schoolmates annoy me because they complain about their slight headaches as if they were dying and are accused by teachers and students of truancy or people don't take your illness seriously or downplay it.
Reading the comments brings tears to my eyes - no, I'm not alone in this.
I have different types of pain situations, which means migraines or migraines and headaches at the same time. Drug treatment with triptans in the form of orodispersible tablets has also made great progress. Luckily, I very rarely have the urge to vomit. My personal favorite among the comments collected: Now don't always make such a drama out of everything!
- Without words! I send the very best wishes to everyone affected.
So I have to say, I'm really lucky in terms of my environment. I've never received a stupid comment, maybe it's because I always look extremely pale and miserable during an attack, so my colleagues expressly 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”.
The external circumstances are therefore quite encouraging.
Of course not the migraine itself, 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 drinks. When the attack is over, I feel strangely euphoric - even though I'm totally groggy - and crave fries with mayo (I rarely eat them otherwise). Pain free days!!
Greetings
Kylling
My top 5:
– Think of a butterfly.
– Now put that aside and do your job (family doctor).
– Maybe your illness will teach you patience.
– Have a child and the headache will go away.
(and what if not?) – Everything has its price. (He meant my artistic talent, also the family doctor)
Also very “enhancing” advice: “Migraines are a prevented orgasm. Let yourself go during sex and the migraine will go away.” “This comes from childhood trauma, have you ever been to therapy?” “Are you stressed? Are you 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; Actually, I should be very overweight - but I'm not. I always have the feeling that my body simply needs a lot more energy than usual during such times. When the migraines are very severe, I can no longer eat anything. Not even water works anymore. To prevent myself from becoming dehydrated, I regularly put water in my mouth. This can go on for 2-3 days, but fortunately it is extremely rare. I was already in the emergency room at the hospital because of it.
When I read all the comments here, I immediately feel understood and no longer alone. I could repeat everything that has been shared here so far, but that would go beyond the scope of this page. I'm 32 (slim, no diabetes) and have been suffering from migraines since around my early 20s. Just yesterday I had another attack that caught me in my sleep. I particularly “love” that. This pain can only be partially explained or described to someone who is not affected.
And in my circle of friends and acquaintances, I have also found that many people don't even know the difference between a “normal” headache and a migraine.
In moments like this, I'm still happy about every painkiller I'm offered. Yesterday I had e.g. B. had nothing left in stock and was overjoyed to get at least one IBU 600. Although most of the pain was gone, the rest remained throughout the day. But at least I could work that way. Because you are ashamed of it and don't want to run to the doctor every time you have an attack. At least I feel that way. And I have already received various “tips” like
– Do more exercise
– Drink more (yeah)
– You should take a closer look at your living conditions and see what could be the cause and eliminate it.
(yes, no, it’s clear) – Avoid stress at work (haha)
– Eat less chocolate (Nope!)
– etc
And the bad thing is that my family doctor gives the same tips.
She asked me if I was suffering from depression (that was the first thing she asked me) or if there was something bothering me, etc. It's nice that she cares about me so much and checks out various things, but then you feel like you're not being taken seriously at all and certainly not back then, because I was young. How do I come to be sick or think that I am sick? I'm still so young. And at the beginning you think something else and first want to rule out organic causes (completely normal reaction). So last year I got an MRI at my request and recently a referral to a neurologist. Although there are long waiting times, at least it's my turn now in August. At the MRI she asked ME what I thought I saw. Um, no plan. Tell me. In the end there was nothing to see. And a few years ago I got an EEG that only partially detected a few bumpy spots, but they weren't observed further.
I've already tried everything. ASA, aspirin migraines, ibuprofen, sumatriptan etc. The triptans help well, but they are very hard on my circulation. I try to take as few tablets as possible. Especially not as a precaution. I try not to become dependent. Now I thought about applying for a treatment. I've been thinking about this for years. That's why I came across this site. Let's see what my doctor says about it. :-) My seizures are no longer as frequent as they were at the beginning. Back then I had them 2-3 times a week. Now “only” once a week and it’s so intense that, like some of you, I just want to bang my head against the wall. You're happy about that, but when the attack suddenly comes out of nowhere and you've got a date or something else planned, it sets you back and you're socially isolated. You never know when it will happen and when it does you have to constantly explain yourself. What I also have is a permanent “mud bulb”. I am so permanently affected because the attacks usually last a long time and take such a physical toll on me that I can live off them for days.
But what I can also say is that it's not always just a fairy tale when it comes to changing your diet. In the hustle and bustle of everyday life, it happens that you sometimes reach for baggies because you don't have time during the week to conjure up a sauce out of nothing. For me, I noticed that gluten, among other things, triggers migraines for me. I also get a migraine after visiting an Asian restaurant and, as we know, they only cook with it. So I avoided it and only cooked fresh for years and lo and behold, it got better. Avoiding a lot of meat also curbed the migraines a little. I don't know if it's my imagination, but I can confirm it.
Thank you all for your experiences and opinions on this topic and wish you the very best!!!
Stay brave.
Greetings from Berlin
Hello, yes, what I mostly hear is, don't act like that, everyone has a headache sometimes.
But no one can see that I have been crying in pain almost every day for 4 weeks now. None of the people who don't have this can imagine how you feel when you are simply unable to take part in your daily life. At some point you feel excluded and left alone because no one can help you so quickly. I've been to dozens of doctors now, CT scans, MRI scans and the next doctor is a neurologist. So far no one can figure out what is causing me pain.
Yesterday a friend told me that I should just take a tablet. When I told her that I take 2x Tilidin, 3x 30 drops of Novamin and 2x Pregabador every damn day to make the whole thing bearable, she was calm. She is familiar with this as she works as a PTA at a pharmacy.
Now I'm having problems with depression again, so it's not easy for me to do anything at all. I'm not allowed to drive, only in an absolute emergency, which means I'm always dependent on others. I think it's good that I have friends and family who basically fight over who goes shopping with me or something like that. But still the whole situation is just stressful for me. The last thing you need as a person affected is nine times wise advice from people who have no idea.
Hello, I'm about to have an attack and was looking for information on the internet again.
I'm about to get inpatient treatment. I am 28 years old and female. It bothers me 3 times a week. My everyday life is limited and my work is limited to 3 days a week. Nobody there understands it. I have a headache and it's my own fault, they say. It makes me very sad. And when I think about these conditions and read your comments, I get tears in my eyes (I wish no one had to suffer from them anymore). It's not the worst pain I've ever had (got a body part bitten off), but it is the worst condition. It's still possible to vomit 13 times in an hour. But you can't think clearly and you bang your head against something. Both of my parents have this and I have read that it is hereditary. I really hope that something will be found quickly that will make the attacks less frequent or even go away. Nobody can imagine it and nobody wants it. Nothing works for me except triptans. No painkillers, no sleep. And sometimes I have to take 3 triptans because I spit them out. I'm now copying in a text that I wrote after a colleague didn't take me seriously because many other colleagues were avoiding work with migraines.
I can't today, I have a migraine... I don't give a fuck about a headache
That's right, anyone who has migraines can live very well with headaches.
Of course they are part of migraines. I would like to clarify a few things here. A headache and a migraine ATTACK are two completely different things. From a neurological perspective alone. When you have a headache, the blood vessels in the brain constrict. During a migraine attack they expand. And that's why no painkillers will ever help with migraines. (It's still nice to be offered painkillers when you say you have a migraine). And as if a headache (so bad that you hit your head against the wall) wasn't enough, you also have to deal with other things: vomiting, nausea that lasts for hours, fatigue, fainting, dizziness, circulatory problems, speech difficulties, vision problems, and more more. This huge difference is now recognized as a neurological disease.
Many people simply have a lot of pressure on their heads and need darkness.
Some have such impaired vision that they can only see half of their surroundings and then there are those who vomit for several hours and would like to drill their head open. Anyone who has symptoms like this certainly doesn't have a headache or is trying to avoid something. Because you wouldn't wish such certain conditions on anyone. And then you suffer from this disease and have a seizure. You have 3 options: 1. They deny it and don't take you seriously
2. They listen to you and learn
3. They are affected themselves
I have experienced everything myself.
I don't even wish my enemy to endure this for 5 minutes.
I'm glad some people are understanding.
And then there are people to whom you tell this and they don't believe a single word you say (they probably don't have google). You can spend hours explaining to these people that migraines are not a headache. They just don't accept it. When you are affected, you may almost cry. They think you're trying to avoid something. Migraine sufferers are more likely to go to work because of their nausea than people who have a headache. I'm not saying that headaches are nothing. I finally want it to stop being compared. Anyone who has read this far is welcome to find out why I am writing this.
I have been suffering from this for 8 years and now wear it twice a week. I'm tired of not being taken seriously. And to this day I still meet people who don't take me seriously. I'm tired of justifying myself. I'm satisfied enough with that. I myself get to the point where I can barely walk and barely talk. The worst thing is that I've now married the nausea and yet I still go to work. Please don't let anyone come to me with a headache.
I know the comments all too well. Family members also like: “Do you have to take tablets again? You’re already addicted!” (If I don't take painkillers at the first sign, I can spend the rest of the day either walking up the walls or hanging over the toilet). Nobody at work really takes it seriously, colleagues usually leave my tasks behind because they don't understand my absence (very limited despite migraines).
Hello everyone,
this morning I was surprised by the migraine in bed while I was sleeping...about myself, I am a geriatric care assistant with permission to provide treatment care and I have been dealing with auramigraines since I was a teenager.
I can fully understand all people who suffer from migraines, because it is hell to suffer for several hours or days with severe pain in the head with all its side symptoms such as vomiting, sensitivity to light, auro symptoms, depression, diarrhea and so on... IT'S possible to the point of being unable to work and if you don't understand that, you haven't dealt with this illness... what helps me, however, is a regular daily routine, if it works, enough sleep, drinking lots of water, having an ear to talk to, some exercise and a diet rich in carbohydrates but without cheese with natamyzin because that is a trigger...
My migraines are apparently hereditary.
My father, my uncle and my grandfather had them - but mine is due to hormones. Once a month I have a seizure that lasts about 72 hours. I'm always sensitive to noise - I'm only sensitive to light sometimes - and nausea only happens sometimes. The environment reacts differently. A former work colleague once said: “You also have something that takes time. Come on. I also have a headache sometimes.” My family is considerate: light mom on the sofa or bed out of the row, then it's time to rest. Unfortunately I haven't found a solution for myself yet. I don't want to take estrogen tablets. I have hope that it will stop after menopause. (Because it started with puberty.) My youngest son also has migraines but only once every year - luckily.
Our now 7 year old suffers from migraines.
It took us a while to figure out it was a migraine. He was about 4 years old when we looked at each other and said it was a migraine for the first time. We had known it for a long time, he screamed, later grabbed his head more often, couldn't be calmed down, got angry, vomited so much, fell asleep and luckily everything was over the next morning. The poor!!! We were there, but couldn't place what it was in its first few years. Today he tells us when he gets a headache. He has an aura. Today he's getting Nurofen early so he won't fall into this crazy pain. He tells us when he needs to spit. He knows everything himself... A comment helped me tonight. Yes, our son is a child who absorbs and processes far more impressions than others. He is emotionally richer. Thinks about a lot of things. I have to process what I experienced first. Doesn't filter stimuli, absorbs them all. One comment spoke about brains that do more and should not be underserved. I will pay more attention to this, because today was a day when there was a lot going on and our son had a lot to accomplish both mentally and physically, but he ate far too little. Too little sugar for the brain. He is also someone who loves to eat. Perhaps he instinctively knows what he needs. As a mother, I can only confirm that this pain must be unbearable!
I haven't done it before and have always stuck to the saying: "Don't judge someone whose shoes you haven't walked in." The few severe headache attacks I experienced were bad enough. I would relieve my son of his suffering if I could. Many thoughts have haunted me regarding my possible failures. It helps me to learn from those affected. Thanks for the input and all the best from the bottom of my heart.
—–it should say “You are hiding behind the headache
...I've had tension headaches since I was 16 and migraines since my mid-20s!
Today, at 65 years old, they are still there! I know all of these sayings only too well!
The best thing was: “You hide behind the headache!” (O-tone therapist) Exactly, I hide behind diapers too!
I always thought the time was over when there were such unenlightened people. Globules and homeopathy may help believers but not fellow human beings who know, because they care.
Especially since today the www net shows so much more possible.
Please no more advice, just understanding. Dear fathers, take the children from their mothers, play with them and leave your wife alone!
No, not just half an hour, but the whole day, even when Formula 1 is on or your football game is about to kick off!
Oh, you can also make dinner for the kids and put them to bed! That helps!
People always don't believe me that it's really that bad... Everyone always says oh, it's just a headache, but that's not true... I would feel the pain that migraine patients sometimes have. Don't even wish my worst enemy
I also think that migraines are trivialized far too much.
Many people think they can just take a headache pill and be done with it. I always get migraines in humid weather. I have to sit in a dark room with a cold towel on my head. So I rate the article with both a crying and a laughing eye.
Still, I liked him a lot.
Hello,
I have had migraine attacks for as long as I can remember.
My mother said that the first seizures occurred when I was around 2-3 years old. I'm now 19. Migraines have determined my entire life so far, as I suffer from them almost every day in bad times, whereas other times they occur sporadically when the weather changes or there's a lack of water or something else.
Since I have always taken Nurofen since I had my first seizures and even today the 200 tablets (for small children) help me (or it completely disappears for a certain period of time) so far no doctor has seriously thought about mine condition or was able to tell me what exactly I was suffering from and what I could do about it.
If I don't take any medication, it gets to the point where I writhe in pain and vomit all the time (and it has never gone away on its own without medication). However, I also don't want to take pills almost every day for the rest of my life
.
Does anyone have similar experiences or tips for me?
I have had headaches since I was a child and they got worse over the years and at some point it was discovered that they were migraines. Today I am 47 years old and still have migraines 3-4 times a month. A doctor at the university clinic in Jena recommended Imigran injekt (syringes) max. 2 in 24 hours and Ibu 800 retard to me about 10 years ago. This is the only and probably the strongest thing that helps. Then I am unable to drive a car or go to work. All you can do is lie down and wait until the attack is over. But I know it helps.
Hello, I have been suffering from complicated migraines with stroke symptoms for years. I could write a book about good advice, tips and even stupider sayings. The best thing I've ever been told is: then have one or two more children and the migraines will go away. I don't laugh, even during my pregnancy I had some severe attacks. In the end, the only thing that helps is painkillers in high doses and rest, darkness - I can't do anything during an attack. It starts with loss of vision and ends with complete neurological loss. I've had to go through many hospital stays. What's worse is that many people think I'm a bad mother because when I have a seizure my husband has to look after our child. That's not the case, I would much rather spend time with my child than lie in the dark and suffer from severe pain. And everyone who says: “It’s just a headache” I wish them only 1 day in their life with a migraine. Because they have no idea what life is like with migraines.
I'm probably one of those who was diagnosed with migraines at a very early age... it's been clear since I was 7 that I have migraines with aura.
I am now 14 and therefore still at school.
That’s why I get sayings like “I sometimes have a headache, but you can go to school!” listen. It's nice to hear that I'm apparently not alone with this. How it always is at school :D Greetings Sarah
I have up to 17 seizures a month.
Sometimes an attack lasts 7 days and then I'm exhausted. In addition to my cancer, which also causes pain, I am almost never pain-free. It's a shame that some people don't understand it.
Hi :)
I have been suffering from migraines with aura since I was 8 years old.
I'm almost 20 now and it was only this year that I accidentally discovered something that has made my seizures go away. My mother introduced me to this: a study by researchers found that the brains of migraine sufferers are more efficient, we perceive movements and stimuli through our eyes better (and therefore usually more sensitive to light). This means our brain needs more energy and if it doesn't have it, a seizure can occur. Therefore, you should pay attention to high-calorie food and definitely avoid calorie diets! It's worked flawlessly for me so far. Of course you have to keep in mind: 1. my migraines always came irregularly and at least every 2 months
2. my migraines went like this: 20 minutes of the aura, then 3 hours of headache and nausea, so about 3-4 hours of migraines -> like I did through forums I experienced it very briefly
3. Every body is different
But still, if I haven't already tried it, I would recommend it to everyone of you :)
I'm still testing it myself and have been migraine-free since January.
I hope I can help some of you with this. Even though my migraines don't last that long, I hope it helps with the worse ones too!
I have had migraine attacks for 6 years, which occur about once a month, sometimes twice, on average 3-4 days. For over 4 years I have told several doctors that the attacks are getting worse and worse and sometimes even last 5 days and that I then become very depressed. I was always told that it wasn't a migraine because it would only last 6-12 hours. 1.5 years ago I asked the then family doctor urgently and quite desperately for some medication that could help me, but he said there was nothing. A naturopath who gave me acupuncture told me after 5 treatments that I absolutely had to get a triptan prescribed, that I should ask specifically about it, that he thought I had a migraine and that his treatment couldn't help me, but the triptan might . Then you also know that it is a migraine. I then had to visit two family doctors until I found someone who was willing to prescribe sumatriptan for me. This helps me quite well (sometimes 50mg for the whole day and night, sometimes I need 100mg in the morning and evening), but as side effects I often have dizziness and a euphoric feeling, but after all the depressive times in which I thought My head is flying apart, I don't think it's bad. The fact that I was put off for so long by doctors who should actually know better still bothers me today and I personally resent it, I see it as bodily harm that it wasn't prescribed to me sooner. Even today I often think that I did something “unwise” that triggered an acute attack and that it was my own fault. That's why my sister recently sent me an article from the NY Times that evaluated countless studies and came to the clear conclusion: AS A SUFFERING, YOU HAVE NO INFLUENCE ON MIGRAINES. It would be nice if more people knew this and didn't recommend some DETOX weekend or other crap.
I never used to have headaches... it wasn't until I was 20 that I started having headaches and migraines.
Today, at 38, I no longer have headaches, only migraines. I've already tried everything there is. I don't know why I have migraines. It was gone during my pregnancy and breastfeeding. After that it came back but very slowly. I didn't take the pill again until 2 years later. Now I'm thinking about stopping the pill forever. When the weather is bad I have attacks on both left and right sides. Only sumatriptan helps for about 10 hours but not always. The effect sometimes lasts for 2 hours and then I feel dirty for another 2 hours. It's always best if I take it 1 hour before bed. I can somehow tolerate the pain during the day. I always go to work. Writing sick what is that? Then I would just be sick. I have an attack for 3 days. Before my pregnancy I even had vomiting, but I don't have that anymore. Acupuncture? Helps if you believe in it but makes me poor. Thanks for the great report!
The article is exactly right!
What I find worst is the feeling of having to justify my migraines and the associated phases of non-functioning to those around me (partners, friends, doctors, neurologists, physiotherapists) and of having to blame myself for the chronicity of the illness. I could do this and that and everything would be better... A physiotherapist once told me that I should concentrate more on my legs and less on my head and do squats regularly. Yes OK.
A general lack of understanding of invisible illnesses. I mean, you're in so much pain that you feel like you're going to pass out and in that moment you have to apologize or justify to others that you can't walk, sit, talk, see, hear, eat, make and do? ! Or listen to how stressful you are... Unfortunately, I've already experienced this in various situations. Does a person who is in pain and needs to rest because of a broken leg have to listen to this? I don't believe. Alright, enough excitement. I just had to get it off my chest.
And for those who would like to know how to deal with someone with a migraine: Simply leave the person alone during the attack and accept that they are no longer functioning as usual and are sick. And for a deeper understanding, talk to the affected person about their migraines, ask questions and learn :)
I have now found out for myself that my “pill” must have been a major reason for the severity of the attacks. This wasn't an issue at first because I was already suffering from migraines before taking the pill. I haven't been taking hormones since October and I've noticed a noticeable difference. The migraines are not completely gone, but they are less frequent and more bearable. I will continue to monitor this and will probably stop using hormonal contraception in the future.
Greetings to all those affected and interested.
Hello,
yes, you have to listen to such nonsense.
In particular, the misconception that certain foods cause migraines is still very widespread. During the aura phase I often have a craving for chocolate, which I then give in to. Afterwards, people often 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 physical therapists assume that migraines are caused by tension in the neck muscles.
It's really annoying that you have to talk your head off in order to gain understanding, which is why I stopped doing that years ago.
When you're in acute pain, you don't care about the stupid talk.
I once had a department head who liked to tell me that our department couldn't afford to support employees who were unexpectedly sick for a few days.
I usually ignored such stupid talk and finally this happened: She proudly walked around the department for a few days and announced to anyone who didn't want to listen that she had tickets to the Linkin Park concert at the Lanxess Arena. Nice.
The day after the concert she called in sick.
Dumb.
Since then, I would always hum a Linkin Park song whenever she would pester me with nonsense about a “single day off” due to a migraine.
She finally understood and said no more.
It's nice when the stupidity of others gives you a weapon.
Best tip I got after eight years of pain: You need to drink more!
Hello everyone,
you all speak to my heart.
I am 27 years old and have been suffering from migraine aura for about 5 years.
I really can't do it anymore because lately I've been having migraines every few days and they last up to three days. I can no longer listen to anything other people say, even if some of them mean well. Nobody takes me seriously, everyone always thinks why is she exaggerating like that, it's just a headache, it shouldn't be like that. Nooooo, that's not it, it's unbearable, it drags me down so much, I sometimes become so aggressive because of the pain that I sometimes have to cry uncontrollably for hours. During my 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 nice days in your life.
Thank you for the great article. They speak to me from the soul
My son is 21 years old and has had migraines with aura for about 16 years. What I find worst is that my husband, for whom he works, assumes that he is lazy and work-shy:-( after the second attack within 48 hours he even said that unfortunately he couldn't kill him. Even some family members didn't understand that have, makes me sad and speechless!
I, too, have been dealing with the worst migraines for at least 9 months now (initially massive vision problems and then the headaches with nausea and complete exhaustion).
Yesterday in the hospital they dismissed it as succinct and made me feel guilty because the health insurance company supposedly wouldn't cover the outpatient treatment costs for me.
Pretty cruel and horrible.
I wish everyone affected the strength, patience and endurance they need to endure such attacks and such (brainless) reactions from those around them.
Many greetings from Emilia
Hello, my fellow sufferers, it also hit me, last year I was diagnosed with a complicated migraine with aura, not a nice feeling, I tell you, when you are almost blind for a while, when it wasn't known yet it was always compensated with a harmless headache and then I had a violent attack that I couldn't handle
. The next day I went to the doctor who urgently referred me to the hospital with suspected stroke, long story short, in the end I had a complicated migraine with aura since I tried to get through my everyday life as best as possible, which I usually can't It's also difficult to deal with professionally because no one understands what migraines actually mean. Many people think it's just crazy, what's so bad about it until I showed what migraines are (yelled at the boss) everything was quiet, it was very moody, absolute rock bottom with me, he hardly spoke to me all day, but friends and family also had to experience this
My husband took me to the hospital again last week with speech problems, numbness and paralysis on the right side of my body.
I was admitted to the hospital and just because this time I didn't get the headaches that I usually get, I was suggested to see a psychologist because these symptoms weren't caused by my migraines. As if I'm making it up... but last year in August I was in the same hospital with the same symptoms, only without paralysis/muscle weakness, and there I was diagnosed with a serious case of complicated migraines and now I'm suddenly mentally ill... I know slowly no longer...
All people who suffer from this miserable torment, who are already severely chronic and can no longer live a normal life, those who have already tried everything are still allowed to listen to “helpful” sayings and all those who somehow carry on , I wish you a better year 2017 and lots of strength!
And I would like to thank all doctors and employees at the Kiel Migraine Clinic for their commitment to the patients and against this disease.
Hello, thank you for your comments, it is very helpful.
I've had migraines for 16 years, usually a few days before my period and more often around ovulation. What is important to me. is a regular daily routine with fixed meal times, sleeping times and exercise in the fresh air. When I have an attack, no pills help me because I always vomit massively and can't get anything through. I got sumatriptan pre-filled syringes, with which you can escape this vicious circle. You can inject it yourself or teach family members how to do it. The pain goes away after about 15 minutes, what's left is a slight dizziness. It usually takes a day until I can walk normally again. All the best to you all!!!
I am not a headache sufferer myself.
But my husband. He has had these headaches for 9 years (first occurring after a car accident). We tried everything from the neurologist, who after a while told him he was resistant to therapy. Then thermogoaculations in the hospital, cerebrospinal fluid examination (very painful) and treatment in the university clinic. Patient at the Kiel Pain Clinic for 6 years. Outpatient every 4 months and inpatient annually or every two years. I have already tried everything that is available on the market for treatment and prophylaxis. We keep hearing;
have you already tried this or that? Of course you cling to every straw that is offered to you. But somehow we have the feeling it's getting worse and worse. The doctors can't exactly categorize the headache; Clusters or migraines? Again and again cortisone shock therapy, blood pressure lowering drugs (although blood pressure is rather too low), etc.
He still works and doesn't let himself get down, lives his life with me at 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 from the medical services of the employment offices and pension insurance companies should take a look at our comments...! We don't have a headache! We are in excruciating pain that is unimaginable to those who only know headaches. Imagine a raging toothache plus a middle ear infection for 72 hours day and night. This doesn't come close to the pain level of cluster headaches and migraines, but it's an attempt to give the blissful non-migraineurs a little, teeny picture.
During acute migraine attacks with vomiting, which can sometimes last up to 75 hours, you can have the feeling of dying miserably.
Then it no longer matters whether you are believed or not. My personal recommendation, after medical supervision, are triptans. The only active ingredient that helped me.
I would like to hang this up in my office so that I don't constantly get “well-intentioned tips” from my colleagues. The nutrition docs are really bad at the moment. The best thing to do is just eat quark with linseed 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 of my fellow human beings and the statements above only too well. No one can even begin to understand this pain unless they have experienced it themselves. I was particularly offended that I was put in the corner of the mentally ill. The sentence “Think about what the migraine is trying to tell you” particularly struck me as well as the fact that the illness is going away. Over many years and my stay with you in the clinic, I was able to find my personal triggers. And learning to say no was central to me. A lot of exercise, a healthy diet, fresh air, and regular exercise have meant that I no longer have migraines, but only occasional headaches, which are rare and easy to manage. It was a long journey that was worth it and improved my quality of life.
Hello,
I am 24 and have suffered from chronic migraines for 10 years.
Here are exactly the things I think about 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 not "functioning." Anyone who hasn't experienced this every day for years has no idea what we have to go through every day and the clever advice they give is really hilarious. I'm glad to have finally found a site that makes all of this clear. Thanks!
Hello,
When I read the comments here, I realize again how lucky I am. I have been suffering from migraines for 15 years (approx. 6 attacks/month).
However, these can be controlled by taking triptans. I've never had to take sick leave and haven't missed anything else, I can do any kind of sport and take part in all events, even while on tablets.
But I have to say, I hate these tablets, the migraine pain is gone, but my mouth becomes dry, my tongue becomes heavy, my reflexes slow and I think much more slowly than usual. A day at work becomes torture because the tablets have a sleepy effect on me .
Nevertheless, I should be grateful that the illness does not limit me and that I can live my life.
Well-intentioned tips are very annoying. However, I have only heard this from friends and never from doctors.
Greetings to all.
Dear Mirjam, it is exactly as you wrote it!
I'm lucky that I currently have 2 predictable days a month (at the start of my period). If I'm unlucky, then even 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 2 days and vice versa and then warms up again. Deadly! And when a doctor asks you about your medical history during the treatment and says that instead of nausea and vomiting you have to deal with flatulence shortly before and during an attack, we then doubt that you really have a migraine, Because flatulence is not in the “repertoire” at all………
I wish everyone who has to live with this illness a lot of strength and hopefully there will be more successful therapies soon!
Mirjam, you speak from my soul and everything you say is exactly the same and I wish all non-migraineurs would read it! !!!!!!!!!!
And even though I know I'm not alone, this is the first time I've noticed that I actually feel understood! A smiling and crying aura eye from me too while reading this article and the comments….
I have had migraines with aura since I was a child. The aura became less, the migraines settled down to “only” 3 days a month when I had my period, they have been getting worse again for six months and are now chronic again.
I did psychotherapy for years and tried all the pills and contraceptives as well as hormonal prevention attempts. Everything doesn't help in a predictable way. Ibus are my best friends now and I'm very worried about just continuing to pour all the tablets down myself. I am not just the head, but also the kidneys, liver, stomach, heart and soul.
I now have depression and an anxiety disorder, as well as a certain phobia of medication and in addition to the constant pain attacks, I want this feeling of being overwhelmed, of constantly having to cancel, of not being able to enjoy myself because there is a hand on the head, half massaging, tired, trying to get over the conversations To follow the table that I have to give up on my anticipations and constantly disappoint others and finally NOT have to have anymore!! I would love to be able to plan normally, do things that I look forward to and experience that feeling of carefreeness again. Light that doesn't burn my eyes, exercise in fresh air where my stomach and head don't flutter again from too much wind, too much sun, too much of anything. Just being without the consequences of pain.
The incomprehension of others, coupled with your own helplessness and the constant feelings of guilt towards your own body due to the many medications, is so exhausting!! I only ever feel half... The other half of life belongs to the pain and the fear of the pain and being isolated.
I also know the 1000 individual price Ibus as a recommendation. It's great if this dose helps for a short time (greetings to the rest of the body), but what then? My attacks usually last 72 hours. The doctor's perplexed face... Do more exercise and, above all, do it regularly. Yes gladly. And please, what about chronic migraines, more than half the days a month? I'll do it if I can. But I always have to catch up on other things in this shorter period of life. And I try… Really.
I've known the cola, water, coffee, lemons, stress etc tips since childhood...
What actually helps me is enough non-carbonated water bottles, peppermint, cold packs, lots of rest, regular eating, not too much sugar at once, little alcohol, not letting feelings like anger and sadness get into me and sometimes even sex... Everything is a little bit easier . But nothing will go away... But at least.
I will print out this article. Maybe I'll get it tattooed on my forehead too, who knows, maybe THIS is the solution and the ultimate tip that I just haven't gotten yet... :)
Stay brave and try to find your way and never forget:
The way we are, we are good and right. No matter whether with or without migraines, shortened hours of happiness, bellies full of pills or bad feelings. We give what we can, like every other person. And then we're all the same again.
I have heard EVERY one of these sayings at least once. What I always like best is: “You shouldn’t close yourself off from new things, listen to your body, it sends you a signal that you should calm down.” or reduce stress, change jobs or or or… VERY tiring.
Migraines for 27 years (at first I thought my eyes were bad and I needed glasses), two children. As the saying goes: I walked from Pontius to Pilatus, really “tried out” the entire program, reported it to countless doctors, again and again. The last one said that I was now finished with treatment since I was getting along with sumatriptan and was finally taking the tablet (or injecting it) early enough. Now the attacks are becoming more and more frequent. And I'm not counting on menopause anymore, I should be over it by now. But you should never give up hope.
Great, finally a site that makes it clear to everyone not affected by migraines what constitutes migraines.
Personally, I am relatively rarely affected by migraines (5-6 times a year), but I always have an aura about 30 minutes
before a migraine begins.
For me personally, I have noticed that my body temperature drops to around 35-35.4°C before a migraine.
If I immediately start running about 15 - 20 km during this aura, I can stop the migraine.
What remains of the migraine is a mild headache over the next few hours.
My body temperature after the run rose again to a normal 36.2 - 36.9°C (I normally have a short
body temperature of 38 - 38.4°C after a long-distance run).
I don't know why running helps me, whether it 's the better blood circulation or the increase in my low body temperature, but it helps me.
I myself only received this tip by chance from another sports colleague who also suffers from migraines and regularly “runs away” from his migraines.
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 am male, 25 years old and have had severe migraines for 5-6 years. Sometimes 6 to 10 times a month. Often quite severe with vomiting (if something intolerable was eaten) and on some days just a completely dull head. My grandmother, mother and aunt were also affected. As the years go by, I learn more and more about triggers. My tips may be new and helpful to some people. Keep sleeping times the same, i.e. don't stay in bed longer than usual on weekends. Eat regular meals and never wait long to eat with a growling stomach. Avoid glutamates and finished products. Alcohol and cigarettes anyway. Lots of fresh air, ideally long walks every day. Japanese mint oil often helps me too. A lot also comes from tension in the neck. Various exercises also help.
A very worthwhile article!
Allowing yourself to be pressured by “good” advice is unbearable. The only thing that helps is not to justify yourself (!): “I don’t want to hear any advice at the moment.”
“When I feel like I need advice, I ask for it.”
“No advice please, I have a migraine right now.”
And if someone doesn't get it yet, just repeat it - once, twice, three times.
Then even the thick-skinned should understand it.
All the best!
I have suffered from migraines since my early childhood. My previous family doctor confirmed it for me and also prescribed various medications. Now I moved 5 years ago and I still suffer from it. My current family doctor says that I don't have migraines and that I'm just very upset when I have a headache :( She even didn't evaluate the reports from my old HA. My boss said I'll have a child and then the migraines will go away. Guys, that's all I can do say, forget the saying. During the pregnancy I almost went crazy because you can't take any medication and my migraines were even more severe. My gynecologist prescribed me massages that helped to a limited extent and the migraines didn't get any better after the birth. I'm also currently in pain that I can turn into a severe headache with Ibu, but that's not a quality of life either. At least my partner is trying to help me, even if it's just by taking care of our little one after work.
Hello, I have also been suffering from migraines for 30 years. It started when I was about 7 years old, so for as long as I can remember. Back then they told me it would get better as adults. All I can say is that it has gotten much worse. When I have a seizure, I throw up several times, I just lie in bed and need rest while my head and neck are bursting. I can't even work, let alone look after my children. My parents already know when I say I have a migraine again. Tablets don't help me at all because I'm constantly vomiting. An attack lasts up to 16 hours. After that it slowly weakens. Since I've gotten migraines everywhere, I can write a book and unfortunately I also know stupid comments like take a pill or don't act like that, don't exaggerate. Or you and your migraines are annoying…..actually I’m the burden bearer???? I've been to doctors many times where I wasn't taken seriously and I've already given up hope. I'll probably have to suffer like this for the rest of my life. I have an attack about once a month, sometimes twice...
Hello everyone, I also have migraines, I was diagnosed with it in the hospital. I am one of the 3% of the rarest and most severe types of migraine. I have several tablets with me and when an attack occurs I first take Dolormin Migraine and lie down in the bathtub with very hot water. So far it has helped me quite a bit to relax the neck muscles. Then go to bed in a dark room and sleep. There are also moments where it doesn't help because I'm more likely to throw up and you don't know what else could help other than an injection in the neck. I hope that the new findings in the area of migraines will bring new and helpful remedies.
I spontaneously send the author of this article about “non-advice” a giant virtual bouquet of flowers!!!
I have had migraines for 22 years. Finally someone writes it so aptly. Not knowing whether I'd rather laugh or cry, I ended up smiling. It's an absolute disgrace what kind of reactions you have to put up with in addition to your suffering. These are often the unspoken ones. Tritpanes don't help me at all.
About 10 years ago I accidentally found out that diclofenac helps. By chance and by yourself – mind you. I've also been telling all doctors what I have for 22 years and only get trial and error on the symptoms. Nobody bothers to treat stringently. Fortunately, with the Diclo I can now cope with acute attacks quite well (thanks! thanks! ..after 12 years of having to endure it!). I now have stomach problems, which are probably also a result of the Diclo. Result from the doctor: “Every time you take medication, you should be aware that it has side effects.” 8-[ And I should also take care of my psyche. As I read this, I feel myself getting angry -> Quote from a fellow commenter, here's a reaction: "Me (single), you (mother): As a mother, I can't afford this." I am a mother of 2 children, working, a single parent.
I can't tell you what kind of pull-ups I've done to fill my role halfway because I just had to. I wouldn't wish this on anyone here, but when I think about how many times I've discussed the next day's schedule between the 8th and 9th of vomiting, or spontaneously vomited into a bag while driving on the four-lane A5 because I had to get home, If you haven't made it over to the right or there is no shoulder at the Frankfurter Kreuz, then you are tempted... We do everything voluntarily because we take ourselves too seriously. All the best to you! :-)))
It's all been said, I've been suffering from migraines for 32 years and suffer a lot from not being there for my family so often, at parties. Since I only work 3 times a week, I somehow manage to schedule the migraines on my days off. No idea why this is so. I know all of these nonsensical tips and I suffer from the prejudices and I'm ashamed to skip them so often. Only someone who has been affected can understand what it means. Everyone else will never understand it.
Hello dear pain sufferers,
due to the occasion I have to write a short post today. I have had a migraine for 3 days. Yesterday (Sunday) it was unbearable and my husband took me to the nearest emergency room. After I waited for treatment on a couch under bright lights for about half an hour, a young doctor in training came and first gave me an oxygen mask. This would often be helpful and if not, the fridge would be full of “cocktails” (= medication – one would help). I was initially given an infusion with 1 g of Novamin, but the pain remained. Then the next infusion with 100 mg ASA. The pain got a little better, but I knew (from years of experience) it would come back...I was so annoyed. that I didn't want to let anyone test me any further and said I was doing quite well. So we quickly returned home and went to bed. As a well-intentioned tip, the doctor present told me to try black coffee and lemon (….scream…) and a psychologist would always be very helpful (I shouldn't misunderstand this tip). Yes, and I had another wonderful migraine all night long, which is now slowly getting better, otherwise I wouldn't be able to sit at the computer and share my suffering and anger with you here... All the best to every migraine patient who has this reads and also has to suffer and often doesn't feel taken seriously...Your Hayka
Hello Pia,
I have exactly the same problem as you... and I only have the exclusionary diagnosis of migraine.
That means I went to all sorts of doctors and everyone ruled out that there could be anything (i.e. orthopedist, ophthalmologist, dentist, ENT). The neurologist then said it was a migraine because nothing else was an option. Since you say puberty, you are probably still a minor, which complicates things, for me it started when I was 15 and I wasn't taken seriously... the best advice from the neurologist was that I should rub peppermint oil on my forehead... that would help and everything else take a painkiller.
I was pissed off... find a doctor who takes you seriously, get all the doctors mentioned above to confirm that they can't find a reason and go to the neurologist when you've gone through everything else. Maybe you'll be lucky and they'll recognize it for you at.
I've had migraines for as long as I can remember and always had pain first in my eyes, but it got worse after a riding accident and I've been to a thousand doctors and everyone actually had something to do with growth, the accident or the period or puberty, my muscles or pushed the spine.
However, I now have the feeling that it's coming out of my head. The problem with everything is that when I take painkillers the pain gets a little better but afterwards I feel completely numb, like I'm on drugs, my eyes still hurt and my neck is actually still rock hard. Does anyone know this and has a solution? I'm slowly getting desperate... And how/which doctor can I find out if it's really coming from my head?
Answer for Kipris
I have exactly the same problem with the noise in the apartment.
I have now taken responsibility for the property management and reduced the rent by 15%. According to the tenants' association, that's OK. And actually, the property management is now trying to teach the new tenants how to live. Noise logs and writing letters were tiring because of pain and many other illnesses, but something is happening.
So, maybe a way for you too?
I too have had migraines (for as long as I can remember, actually) and have heard some of the “advice” listed. But luckily for me, my family understands me and takes care of me when I have attacks. Unfortunately, they are becoming more and more common and headaches are actually tormenting me all the time - sometimes mild, sometimes stronger. Since I'm still a minor, the doctors can't or aren't allowed to prescribe me "stronger" medication for migraines and so I have to take them several times a week Use classic painkillers like Dolormin or Thomapyrin. But when I have very severe attacks, the only thing that helps me is dark rooms, rest and sleep. Until a few months ago, like many people, I felt misunderstood and alone because I didn't know that so many people had to deal with this illness. Of course, everyone affected wishes that the pain will become easier or even disappear at some point, but in my opinion and apparently also that of the doctors, this is unlikely to be possible. Nevertheless, I hope that you can enjoy your life and somehow cope with the pain, what else is there for us?
My favorite sayings are:
“Migraines?
You have to drink a glass of cola and it will go away.” “I also had migraines once. But since the pregnancy/menopause it’s gone.”
Then I'll probably drink a glass of cola and get pregnant - the menopause can take a while...
Hello, my dears!
I just read the so-called advice and your posts with one laughing (or rather, sad) eye and one crying eye. These lines sound more than familiar to me too.
There are the “malicious” people who think they know better (but the main thing is to stay at home even with a “normal” headache!!) - but I try to ignore them as best as possible.
and then there are the people who really care about me - and who I know mean absolutely well and honestly towards me - but after more than 10 years of chronic migraines, what was well meant is unfortunately not well done .. sometimes I find myself still annoyed, even though I'm sure they really want to help me.
I honestly find it difficult to deal with this because many people don't understand it. If someone has broken their leg and arrives with a thick cast, they are taken into consideration, but with THIS clinical picture, I often have the feeling that I am not being taken seriously - I have even had this happen to me many times with doctors.
Even if NO ONE in this world wishes this pain on anyone, I'm still glad that I'm not alone with it and I feel for each and every one of you!
sunny greetings
Hello, since I was 14 I have had 2-3 attacks a month
until I was 40, always treated with novalgin, caffeine, Omep and paracetamol and ibu.
Only since I've been taking triptans in real life. Thank God for
all the people with your great advice, I sometimes just wish I had one such s... attack so that you can understand how we were knocked out with an attack.
But I also had to learn one thing - avoid triggers such as irregular eating, too much coffee or red wine...
There is nothing negative in my environment. I often go to work with migraines. Three times a year I miss two days because of it. I'm currently changing my diet. Dairy products trigger an attack immediately, as do flavor enhancers and fatty foods. There's not much left. But the fear of the pain keeps me going. Things really started after the birth of my second child, and now after four years I am now pain-free for one week a month. After changing my diet, I had a migraine for two days when my period started, and one day for ovulation. Maybe it helps. I don't care whether the food tastes good or not, as long as I don't get a migraine.
“You have to look closely, there is a reason for everything.
If you know what triggers your migraines, you will heal. Just go to the doctor sometimes” 1. I looked for years.
I have optimized a lot and I'm slowly getting tired of it 2. The reason is genetics or "Migraines are not a result of another disease, but their own."
You can tell someone, but often the prejudice is too strong to gain new insights. 3. If I know a trigger, I can minimize migraines... Migraines cannot be completely cured... See prejudice in point 2. I feel like Don Quixote...
4. Go to the 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!
Hello folks.
Yes, I know the sayings and suffering.
I admit that I “only” have migraines once a year. But then 1-2 weeks! I have another saying from a doctor: Like... migraines in winter, plus tension.
That's not what it says in the book. I don't know which book she meant.
(Diary?) But it's strange that my old family doctor and the emergency doctor and my neurologist diagnosed migraines. If I didn't have migraines, the triptan wouldn't work.
And it does. All the best to all migraine sufferers.
I have chronic migraines, very often with aura support and the whole program you can have.
Terrible! And the attacks have come quite often so far. At the beginning of January a family with a child moved in with us and I'm getting migraine attacks every few days. The child is about 4 or 5 years old, is NEVER outside and thinks the apartment is his gym. From around 7:30 a.m. in the morning and usually until shortly before 8 p.m., the boy, no lie, runs (gallops) through the apartment all day long without any major breaks (breaks usually last 2-4 minutes) and jumps alternately in each room off the furniture. All of this happens barefoot. People live among us, but the noise is unbearable. The parents don't behave much better: they don't know what room volume means. The doors are constantly slamming, everything falls and rattles. We were there, explained the situation to them, asked if there was a possibility of stopping the noise a bit, and also offered to buy them slippers (apparently there was no money for them and the child had nothing to play with, so he ran with them all day and no one is willing to stop him or go out) We bought 3 pairs of slippers, old toys from our 16 year old son, like Hot Weels with a play mat, Nintendo Wii with games (which my son actually wanted to sell), Lego and other toys were brought downstairs to the neighbors. Do you think things have become a little quieter? NOT AT ALL. I'm just disappointed and really sick. Just the flu that hasn't fully recovered yet, plus the constant migraine attacks, with no way to find a quiet place at home. I can't drive when I have an attack because I can't see anything, and tablets don't really help me anymore because I have to take them up to 3-4 times a week. The other day I just got in the car when it was dark and laid there because that's not possible at home. I have been on sick leave for over six months (due to another illness) and am always at home. Moving out is not an option because the apartment is great and the rest of the neighbors are just great. Can anyone give me tips or advice on what we can do, because it 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, I've been almost back to myself for an hour. Now I've read through this article and the comments and I don't feel so alone anymore. Migraines are lonely. Depression too. I've had both - depression for ages, migraines for 4 years. I've now got the depression under control to some extent, but with the migraines they've come back to a level that leaves me at a loss. Me – and the people I tell about it. Sooner or later everyone withdraws. I can understand it. Most of the time I withdraw myself before the other person does. Somehow there is no one there anymore. But I'm somehow too powerless to change that. Greetings to all of you! And thank you!
I am single and live alone.
A company doctor once advised me to combat migraines: “Get pregnant. You don’t have migraines during pregnancy.” I find it disgusting how completely thoughtless doctors are.
Hello,
I read a lot of familiar things here. Nevertheless, at this point I would first like to thank everyone who understands our illness and supports us wherever they can. THANKS!
But I would also 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 worse, more frequent and longer due to various triggers. After about 3 months I was called to an employee interview. I was told that if the job was too stressful for me and I had migraines because of it, I should consider whether it was the right job for me. Just out of protest, I endured another painful 1.5 years.
Since I got a new job, my migraine sufferer and I get along a little better. She comes by every now and then to visit, but no longer stays longer than 3 days at a time and we are both happy when we go our separate ways again.
There is nothing to add. I too have had to listen to a lot of insensitive and know-it-all “advice”, especially from people who have no idea what migraines mean. I have been a migraine sufferer for more than 25 years. Only medications with the active ingredient triptans make my life bearable.
I've been suffering from migraines since I was 14, and I can't help but hear “well-intentioned” advice.
It's almost always about some doctor's recommendations, nutritional tips (cut out alcohol, certain foods), exercise (I do it 3-4 times a week), Schuessler salts and so on...
The best tip is always “You have to think positively”!
Thanks for these lines…I had to share it directly for all the “advice givers”
Dear team of technicians!
It would be great if you could add a few tips to the article about what you can say or do for migraine sufferers to feel supported.
It is often helpful if you can clearly tell your family and friends how they should deal with you.
This is of course very individual, but there are definitely tips for “partners”, which are usually well received by those affected.
And: many friends of those affected will read this too!
Thanks and best regards!
AW
Brilliant statement, absolutely apt! But I find it shocking how little people want to understand. Especially immediate family members. When you have a seizure, you can see how the person affected is doing! Why is it so difficult to simply _believe_ and help instead of putting migraine sufferers down in whatever way??
Ute January 10, 2016
I have been struggling with migraines for over 20 years. Initially no such acute attacks since 2006, it has now been determined that it is chronic. You are simply not taken seriously by society and doctors. As described in the individual reports, you are treated like a hypochondriac, excluded, made small with sarcastic comments. It's not just the attacks that destroy you, but also the superficial treatment in everyday life. I would like to thank those affected for the descriptions and hope that the people around them will become more aware of this disease...
Good day.
I was at a clinic near me yesterday. After 5 minutes I was outside again. Nothing can be done for me. Beforehand, I filled out a questionnaire and then answered the doctor's questions. He classified my “triggers” psychosomatically. But they are actually very special. As soon as I open my eyes in the morning, I feel a cold in my right eye. In the past, ordinary protective goggles were enough to provide the eyes with a pleasantly warm protective climate. Later it had to be a completely sealing protective goggle that rests on the cheek of the face with a sealing rubber. But outside that's no longer enough because the cold hits your eyes through the lens. Shortly afterwards, stitches appear behind the eye, which lead to a migraine an hour later. At home I can pull a long beanie made of warm alapaka wool diagonally over my right eye. The resulting heat causes the eye sting to disappear immediately. If I miss the time, the migraine will come back.
Now I come to psychosomatics. ;-) I recently sat at the dentist for an hour without safety glasses and without my alpaca hat. And lo and behold, no stitches behind the eye, the head didn't cool down, everything was fine. I was distracted and my everyday problems faded into the background, at least for that hour. Hm, maybe it's the psyche that's causing this whole thing, at least for me...
Greetings from Sauerland
"You only need to drink 2-3 liters of lukewarm water within 30 minutes.
Then your migraines will stop. This is done successfully in Chinese medicine”. A self-proclaimed health advisor gave me this advice. It's so sad how little people still take this cruel disease seriously. At this point I would like to wish all suffering migraine sufferers many attack-free days at Christmas, a better New Year and a little “good advice”.
Went to hospital for the first time because of a massive, uncontrollable attack. The question of whether there are no family doctors, 5 hours of waiting time in the outpatient clinic, infusion with Novalgin because there are no triptans in the entire house??!!Novalgin brought down the blood pressure, the pain was still there. Then the doctor tried to get rid of me again She advised me to go home and take my home medication, then she tried to transfer me to another hospital, unfortunately they didn't accept me and advised her to do a CT scan of the skull, give Tramal and admit me as an inpatient. Done, done...Meanwhile I was allowed to hear from the nurses how exaggerated it was, it was definitely just a pinched nerve etc. etc.. Tramal, Novalgin and staying in the 4 bed room didn't help. So the doctors came up with the idea it could be a cluster headache and tried to treat me with oxygen... After 2 painful nights without sleep and lots of tears, I discharged myself. The doctor's letter then said: Mainly cluster headache, patient is tolerable, complaining, Improvement after tramal and oxygen…. Huh???
My “favorite comments”:
“You don’t stay at home because of a little headache” (when you call in sick)
“Work helps against migraines”
“You miss regular sex/masturbation”
“You just have to find out what the migraine is trying to tell you”
“I (a mother to me As a single) I can’t afford something like that!”
“You don’t need to invite Uli, she won’t come anyway because of her migraines.” “
Just do some exercise” – from a neurologist while I stood in front of her in my underwear. I am very sporty and have a slim, toned body...
And you keep hearing that this is “something psychological” and that it’s your own fault. Some wrong behavior, too sensitive, too responsible, too perfectionist...
I, too, suffer more from the reactions to my illness (M. has been chronic for over 35 years) 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 topic myself, I would probably have said such things myself.
You try to help, but without explanation you can only say the wrong thing. I always associated migraines with the snooty mother from Pünktchen and Anton. Suddenly it became too much for her and the oh-so-stressed woman got a migraine and should be left alone by everyone. It always sounded like a well-functioning excuse to me... But when I was confronted with a migraine attack for the first time, I was just ashamed of my thoughts at the time. I have never again jumped to conclusions or made judgments about something I have no idea about. For me it started really violently. I had up to four attacks a month, each lasting about a week (have fun calculating the pain-free days). I was told so many times at school or elsewhere “just take a quick ibuprofen and you’ll see it’s over in half an hour”. I'm really not a violent person - on the contrary, but in those moments I just wanted to lash out. From ibuprofen to parazetamol, Imigran, Formigran and Novalgin, nothing worked. What was worse, however, was that I, still so young, was already affected by this “old lady's disease” and certainly no one my age could understand how I was feeling. I was in the hospital a few times and was high on drugs. But there was no understanding of the others. Even my teacher once said in front of the whole class that she was so annoyed that she hadn't thought of this simple way of saying something back then and that she admired how smart I was to simply say I had a headache. With this teacher in my pocket my fist clenched more and more. However, my parents and doctors were very understanding and tried every possible method to help me. But when I was finally referred to a pain therapist, I felt like I was in heaven. He prescribed me Profilaxe medication, which I still take successfully to this day. The attacks only occur about once a month and can be stopped with ibuprofen and lots of sleep. The pain therapist also helped my self-confidence immensely by simply saying: Please turn around, these are my patient files from the last two weeks of children and young people between the ages of three and eighteen. I could hardly believe my eyes. It was a huge pile of files upon files. It's obviously a shame for the children who were also affected, but I'm so incredibly grateful to them. Be that as it may, I know I am not alone. I now know that it can happen to anyone, at any age, with any character or lifestyle. No matter whether you are snooty or shy, pushy or reserved. It could be everyone. It is not up to me. Whenever I get a migraine attack now, I am no longer desperate, ignorant and at a loss. I no longer blame myself for the pain. But I'm happy that I know it will pass and I'm not alone. When I read the comments from all the other people affected, I became even more encouraged. 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 sayings always come. But it's not because outsiders want you harm, it's because they are simply ignorant. Too bad but true.
At the mother-child spa, the spa doctor explained to me that MUSTARD would help with her father-in-law's migraines. Who else needs medication…….?
A family doctor explained to me that I needed to change my life. I would have too much stress. Also true. But somehow I have no influence at all on my father's cancer, arson by third parties and the child's serious illness. I then suggested that I get a divorce, put the children up for adoption, quit my job and apply for Hartz IV. Those are the only factors I have control over. He didn't find it funny at all.
I know everything. At my secondary school I was even accused of having a drinking problem. The teacher said that if you could party, you could also write math papers. I shouldn't act like that, other people would come to school with a hangover.
Hello!
I am 15 years old and have had migraines for over 2 years.
I also have migraine sufferers in the family (father, sister) and can also expect understanding from this side. I often have migraines for several days. But at school I usually just get looked at strangely. When someone asks me what I had and I say “I had a headache” they usually just say “Yeah, it’s clear that I had a headache for a week.”
And even if I say that I have a migraine, people act as if I'm skipping work and get comments like “Migraines don't exist,” “It can't be that bad,” or something similar. People who don't have migraines simply don't understand what happens to those who suffer from them. I haven't had the problem for that long and I don't really understand it myself, but I'm very sensitive to factors like stress and I don't need additional pressure from classmates, friends and even teachers. I wish this topic would be clarified, but probably no one would understand it and take my illness seriously.
Of course it's also the chocolate, ice cream, meat, vegetarian and vegan food, diet, no diet, carrot heads, the tap water, the electrosmog, my cell phone, the PC, the television, too much / too little salt in the food, fertilizer in the Brussels sprouts, germs in the potting soil…etc.pp.
I've already been to a naturopath, I'm one myself.
Note: I apologize for the poor grammar and spelling. I'm currently having the aftermath of an aura.
I've had classic migraines for almost 20 years. In my youth I had one attack once a month, followed by a few years of rest, and since my 30th birthday 20 times a month. Sometimes it is limited to the aura, sometimes the full program of pain without any medication having an effect. I now take beta blockers and antidepressants as a prophylactic because the constant fear of the next attack has developed into an anxiety disorder. I have heard all of the above advice enough. What's worse is that I believed her. The simple fact is, every day is a gamble. From one minute to the next, all planning can be thrown out the window. You have to think about how to explain yourself at work or how to somehow get home to your bed. It's especially great when an attack happens in an unprotected room. I've spent "great" hours in supermarket parking lots because the aura made driving by car impossible. Finally, my boss once said it quite well. If you survive a heart attack you are a hero. If you have an inconspicuous migraine, you are a denier who takes yourself too seriously. This statement was not malicious, but rather with a touch of pity because one is helpless, even powerless in the face of the illness.
As a woman, you also hear the saying that you are not able or willing to have sex/relationships/dates.
Finally an article that describes what we migraine sufferers have to go through. It's often the statements I hear at the weekend like “you can't drink anything today because you took a tablet (triptan)?! Whenever I go out to party at the weekend, I take 2 Iboprofen so that I don't have a headache the next day and I can still drink something" - I often don't like to party anymore because of statements like that. There are people who give you the impression that they want you. Only the migraine patients themselves can understand, but really understand. Thank you very much for the blunt facts, which I would like to pass on to my friends via Facebook.
I've had migraines since I was 6 years old.
I'm now 39 and I've been able to listen to every single item on this list, some several times in my life. A physiotherapist came along and said she could massage my migraines away.
The result was that I had mild migraines before, and then after the treatment I had extremely bad migraines, which even the triptan didn't really help with anymore. Or a dentist who said I just needed a brace so that the migraines would simply disappear.
And an (ex)boyfriend who said I should take Q10 as it would help with migraines.
Not to mention all the teachers during my school and training years who sent me out for some fresh air instead of letting me go home to my bed.
I hate it when people start throwing clever advice around like, stop eating this and avoid that and don't take so many tablets (one triptan per attack is hardly much and helps me if I take it take on time).
Now, however, I've gotten to the point where I don't expect understanding and I brush off people who give strange advice straight away. Maybe I should actually print this out and give it to me to read when I need it. I'm excited to see the stupid faces!
It's shocking how accurate these statements are and what we've already heard, or from whom!
I often wished the person concerned had my symptoms, just for an hour.
I think the article is good, but how should you deal with migraine sufferers...?
When I went to the neurologist at the age of 15, he said that I shouldn't act like that. When I'm 50, it'll be over.
These are really appropriate statements... but it's worse to let people who don't know this pain make you feel stupid. For example, I had to hear that there was no reason not to come to work.
Thanks for the really helpful statements that non-migraineurs should really avoid!
I have had migraines with aura for 39 years, but also another form without aura.
In rare cases I also have speech disorders. The attacks tend to come when you have something planned in your private life or even during work. My colleagues don't know anything about it, I only become a little calmer during an attack. You just become masters of covering things up because there are still these prejudices from people who don't know. Once when I was at school I couldn't finish a math paper because I had a migraine attack in the middle of it and...
Aura couldn't see anything. The teacher dismissed it with a smile and accused me of not having learned! I felt so small and helpless back then, I will never forget that as long as I live! Petadolex (butterbur) helped me for a while.
This was once banned in Germany because it may have damaged a patient's liver. I think it's now allowed again.
It is used as a prophylactic measure and the frequency of attacks for me has decreased significantly. I'm currently in the mood for another attack.
Since Thursday last week I have had 5 attacks with aura. It's slowly getting to the point! I wish everyone affected a time as pain-free as possible.
I've had migraines since I was 14 = 35 YEARS!!
I've tried everything and have been on Animeurin 12.5 mg/day for 2 weeks. Migraines every day for the first week and now 7 days pain free!!! but also already 2 kilos on, which of course can't continue like this :-) Bed blockers only made me sleepy, topiramate depressed and -3 kilos.
The attacks remained between 8-10 per month. I'm very excited about further developments.
A question for Brigitte Prasse: were you retired because of migraines?
Does anyone else know more about this?
I would be very interested. I wish everyone affected continued strong nerves and perseverance!
A few years ago I had to go to the medical examiner. He was firmly convinced that you could work 8 hours a day with acute migraines. These and other “smart” statements arise from ignorance. Okay, sometimes out of stupidity ;-)
I'm 42 years old, I've had migraines with aura for 20 years, no one understands it, not even the neonologist except the person affected, it's just sickening.
I've been allowed to listen to every thing imaginable...and I have to say that it seems to be getting worse and worse lately.
I am 22 years old and have had one of the most severe forms of migraines since I was 8 years old, plus an aura (eye area). My pediatrician at the time called me a malingerer. I carried migraines with me until I was 19 and simply tolerated them as much as I could. Then I gathered all my courage and simply went to the neurologist, who then sent me to the university hospital, headache center area, in Essen. After a 2-3 hour examination by several doctors and physiotherapists, the diagnosis followed: migraines with aura (pain 29-30 days a month that cannot be relieved even by the strongest medications) and now I am desperately looking for another way to relieve this pain to be able to alleviate.
I'm 14 and the migraines mean I can only go to school to a limited extent.
I read that you should (already) reach your peak at 35 and from then on you won't be able to work for several weeks. What should i do. I mean, I'm 14 and can't even go to school (properly) anymore! But I'll see a doctor tomorrow. But what I don't like is that at home my mother, for example, doesn't understand it when I don't get up until around 1 p.m. because I just had a migraine all morning. She said I could still get up earlier. Something like this makes me sad because I don't feel understood at all and because our mother-daughter relationship is weakening... But what I read above helped.
Thank you very much!
When my migraines started 15 years ago, I didn't have a diagnosis.
First of all, just the one-sided pain that no normal painkiller could do anything about and that I had to... who could barely get the nausea down anyway. Comment from my family doctor:
“Well, if I say now that you have migraines, then in the future you will always have to rely on medication and I don’t want that.”
As if her words were bringing on the migraine.
As a result, I struggled through every attack for years without medication. It wasn't even enough for a referral to a neurologist
I suffer from migraines with aura.
From the age of forty it was over for seventeen (!!) years. Now I'm back again. Despite beta blocker prophylaxis, the attacks occur. It seems nothing can stop her, I'm desperate. Will have to increase the dose of beta blockers even though they cause side effects. But all the comments were helpful to me today.
Since my family doctor doesn't take me seriously, I buy my tablets at the pharmacy like so many others do: When I went to see a neurologist today, all I could listen to was, well, they're not strong, they weren't the least bit interested in some of them You have to take up to 10 tablets for days in order to make ends meet. The only question is why do you drink warm water when you take the tablets...or oh, you just have the feeling of vomiting, but that's not typical...how come? the pain on both sides no not typical dumbfounded look at my statement it's as if thousands of little men are digging around my brain and I got a few in my eyes because the pressure is so great and I can hardly see anything... the only thing that helps is exercise and relaxation exercises says she... in moments like these I'm happy to be in bed and have peace... but actually all I can do is sit there and cry
Direct hit!!! I’ve heard all of these “tips” before. This is really annoying, but unfortunately people don't understand it. I've suffered from migraines for 26 years and can't get rid of them. During acute attacks I am bedridden for 2-4 days and unresponsive, I often think why I'm still alive... Plan something, make a fixed appointment - none, I'm sure many of you know that. That's where I'm lying flat. I was once even contacted anonymously saying that I was faking my illness. If I could just give this person 1 hour of migraine so they know what migraine means...
WoW - I'm sitting here reading all the comments and crying - like so many people here, I've felt the same way so many times.
Enduring the great advice, the great tips, the many suggestions from “non-migraineurs”, constantly having to explain yourself, trying to counter the common cliche – it’s just exhausting. The lines from the story listed here are so true and I sincerely wish you all to always keep this advantage!!
Quote: “one who has the advantage of valuing healthy days more
than those who “always” have healthy days,”
Ha I also had a violent attack once and called the STV boss. He said it couldn't be that bad. I should come to work!
Ok, since he didn't believe me anyway, I went as soon as I was there (I was a saleswoman) so I sat at the cash register. 5 minutes later the cash register was full of vomit and I had to go to the doctor Morfium from then on got a really bad phone call from the doctor
I was advised by a nurse to have more sex, it got her migraines free. A pediatrician advised me to go swimming if I had an acute attack. You should create a table of curiosities, especially doctor's tips, which reflects the doctors' ignorance.
A neurologist once said to me that despite taking beta blockers and trying to prevent them with topiramate, my migraines didn't get any better...”well, what else do you want from me? You also get your triptans from your family doctor.”
I also suffer from migraines. It's full of jelly and not even a tablet helps me. What I used to have to listen to and still do: “Drinking a lot helps!”
I'll say one thing: it would be nice for me to hear that it's always pounding so hard that even when I'm shooting, my head explodes. And I also drink enough. Now make a diary.
Finally!
It's not just the migraine that completely knocks you out, it's also the resulting psychological pressure of having to CONSTANTLY justify yourself - I now find that even worse than the migraine itself.
That no one believes the pain, doesn't know what it means to be in pain for hours, the days are over... My supervisor knows about my trips to different doctors and yet she keeps saying: I'm sure it's not a tension headache or maybe it's hormonal. I've now got a GdB of 40% and yet she says things (when I have a migraine attack on duty) like: if you go for a walk, you won't come to work by car, but by train - as if that were less irritating.
Thank you for this great post.
It's crazy what you have to, can, and are allowed to listen to.
I once had to go to the hospital and was given very strong antibiotics and, of course, as a side effect;
Migraine; I told the doctor that I had been a migraine sufferer for years and needed a painkiller (my own triptan, or a painkiller she could give me).
She then told me: “I’ll give you 1 paracetamol, it definitely helps”… of course that didn’t work. The nurse's comment: “You should think about whether you are an addict if even a paracetamol doesn't help with the headache”.
My suggestion that I didn't have a headache but a migraine was dismissed with a tired smile.
But, and I also have to say this here, my roommate was incredibly upset about it! Every time the nurse or the doctor came into the room she complained about such unprofessional treatment. She really stood up for me and that helped me a lot :-)
My former boss once said to me when I got severe migraines “I think you only get migraines in the summer” I was speechless and stunned!!
I know how you feel, I also suffer from migraines in connection with severe burnout, which is really not easy and with a small child. As a result, I had to give up my job and was under neurological treatment, which I still am today. But my boss was very understanding and so were colleagues and friends, which I found very good. But fortunately I haven't had any bad experiences with the disease.
……have you tried this or that yet? no? then the pain can't be that bad!!
I was stunned!
After “examining” me regarding the migraine, the company doctor said the following: Oh, you’re going to have thyroid surgery shortly? Yes, then everything is over, after that you won't have any more migraines and you can keep your job as normal.
That was 2013…nothing has changed since then. Which is inexplicable to the company doctor from “back then”.
I had another bad attack last night after spending half the day agonizing over the “signs” at work!
Now I came across this page by chance and it really brought tears to my eyes! No one knows what kind of pain this is who isn't plagued with migraines themselves!!! THANK YOU for this site and the feeling of not being alone about your experiences at work!!! Are there any ideas from those affected here as to what you could respond to if you have to listen to stupid comments again after missing work????
I don't think the first piece of advice is all that inappropriate if you don't mean it succinctly but rather seriously. I am severely affected by migraines myself, am a doctor myself, and have to constantly remind myself to look at where too much stress is accumulating in my life. This happens slowly and gradually, and there are usually a lot of small things, but small animals make a lot of crap. The brain is then simply overloaded. I think that when it comes to this point you can do a lot to reduce the number of seizures.
I have already heard all of the advice and recommendations from doctors and have followed some of them, e.g. years of psychotherapy, everyone has a corpse in their basement :-) Luckily, I have super dear friends who don't make stupid comments but are very understanding for my situation. After a two-year struggle, I have been retired since the beginning of 2015. This means I no longer have to worry about the workplace situation.
I was still in the office despite the most severe migraine attack and my colleague, enveloped in a cloud of perfume, said very poisonously: You're doing well, you just have a migraine... I have herpes on my lip - you can't even kiss anymore...
A lifetime of headaches at most - then the horror of “migraines” from one day to the next, it overwhelmed me. After a day that I didn't make it to work and stayed at home - back to work. The colleague's exact words: It's your headache, why do I care?
I still have some:
It can't be that you always have pain at the weekend!
or
If you stopped sticking your finger down your throat, you wouldn't have to puke all the time!
... the bottom line of all this good advice...
if you can't get migraines under control, it's your own fault... It's
not just the illness, the attacks... the suffering that's bad...
status of this illness
is also stressful and painful - it's similar like obesity… or addictions…
you get the label... it's your own fault - not so easy to get rid of!!!
Dear Iris,
We have taken up your important suggestion and are now discussing it in our headbook http://www.headbook.me . You are welcome to join in, read along, whatever. Feel free to take a look, you can go directly to the relevant subforum here: http://www.headbook.me/groups/migrane-vorbiegung-durch-behaviour/forum/topic/was-man-menschen-mit-migraene-sagen-sollte /#post-98872
Kind regards,
Bettina
I find the attacks as strenuous as a first birth - my whole body is at peak performance and is affected. Afterwards you are just as exhausted and blissful, only the reward is missing - no gift (child;)) - only the fear of the next attack is there
Thank you for this article, I will print it out and carry it with me in small format.
For years I didn't get any triptans and took lots of strong painkillers that didn't make it stop! Even with triptan I can only attenuate my migraines for a maximum of 4-6 hours. Always 3 full days in a row plus the mood swings before and the fatigue after.
Nevertheless, you can function with this illness, not least in order not to lose your job. I can't miss every month because I always have migraines for 3 days in a row before, during or after my period.
A human resources manager once said that I must have been under too much stress again. That doesn't make anyone worse either, because it sounds like you didn't take good enough care of yourself...
I even had my homocysteine level checked because my husband read that that could also be the cause. I have tried, among other things, Indian medicine, acupuncture and of course I know everything that is in the article. Orthopedics (you definitely need insoles so that your body doesn't get tense...; oh, a vertebra has slipped out, we'll put it back in place and then the problems will go away...), I was put on an outpatient drip with the words, it's working now at least 24 hours. The bad feeling remained, although after this treatment the effect wore off 4 hours later and I thought I wasn't normal. I didn't want to go back to the practice, after all the effect was supposed to last longer...
The low level of acceptance in our society when you don't like to drink alcohol, no matter how great the occasion is... it's only one time, nothing will happen, etc... Being laughed at when you explain that alcohol causes migraines...
I had my last severe attack to accompany my flu. My family doctor said that the flu-like infection had definitely triggered the migraine... I became terrified of my condition, explained the situation to the emergency room and that triptan wasn't helping, so I was recommended to simply swallow another 1000 mg IBU afterwards.
I live near Kiel and would love to come to your clinic!
What you should/can say to people with migraines!!!
I would be happy about a contribution like this.
A friend has been suffering from migraines for years, she also shared this link. In order not to say the wrong thing, I find it increasingly difficult to find the right words. I hardly say anything anymore, but I don't want to be apathetic or rude either. Finally, I know that she suffers from unbearable migraine attacks.
Thank you very much for this article, I'm crying because I also see myself in some of the comments!!
I have been suffering from migraines with aura and neurological deficits for 36 years.
A psychotherapist also recommended that I have more sex, and when I asked for rehab I was told that I wasn't sick often enough because I was "stupid" and even dragged myself to work blindly when the aura hit me shortly before I left.
I'm so tired of it, the attacks have been increasing for 5 years, so that sometimes I have one or two attacks every day for 14 days, it often hits me at night too, then I can't counteract it with Novalgin...
I'm in the process of applying for a GDB, so I'll put it on my shoulders!!!!!
My neurologist said that it is normal for migraines to have attacks for 5-7 days at a time.
While researching the topic of headaches and migraines, I came across the Kiel Pain Clinic. Great how you handle the topic. How often are children told: Don't act like that, plus all the comments you mentioned... I experienced this myself, and so did my daughter decades later. We're a headache family, so to speak;-))) I'm even more interested in ways to get away from headaches, and they exist! Good luck with your work and best wishes from the south!
Migraine sufferers? Of course!
I am a migraine sufferer;
a fighter,
a survivor,
one who has the advantage of valuing healthy days more
than those who "always" have healthy days,
a person who has had reason
to delve into the subject of health,
someone who likes has fun without alcohol,
someone who still spat next to the “A-Team”,
someone who has had different life experiences,
an incorrigible optimist who always believes
that every day will be a good day,
an enthusiastic crazy person
who then and when forced to slow down,
a persistent type who won't give up his fight for well-being
until he's on his deathbed.
Yes, I am, my soul, a migraine sufferer
and I am proud of everything I have done
to get better.
I am a fighter.
Don't come here and tell me
that I'm affected and that I'm suffering!
I don't want you to see misery
when you look at me.
I am a migraine sufferer,
and yet
so
much
more.
Åsa Stenström
(own translation from Swedish)
It's great that the people affected are talking openly about it.
Migraine is a murderous disease that turns your entire life, including your family, upside down, nothing is the way it was and probably never will be the same again. We too have to listen to stupid comments from stupid people, try this, do that.
My son was a fun-loving guy and always had migraines, but only once a month. For over a year now he has had migraines almost every day, tried all the usual remedies, endured all the examinations, and sometimes he was also sickened by the side effects of the medication. Now we put all our hope in a migraine clinic, although there is certainly no miracle cure there either, but at least there is an improvement. I wish all affected migraine sufferers good luck, don't give up, don't let yourself be insulted and hold on, so that maybe one day, instead of flying to the moon, we can alleviate this cruel disease.
A doctor told me that migraines were psychological and wanted to refer me to a psychologist.
A friend also said that.
We now know that migraines are a neurological disease.
Comment from my husband, who is a doctor himself (surgeon), that he can't do anything with hysterical women when I'm in the middle of a migraine attack.
I wish everyone who doesn't believe me just one attack so that they realize how powerless you feel and that “the pill” you're supposed to take usually doesn't help. Even if you're never completely okay for days, you still go to work. Many of the know-it-alls probably wouldn't do that either. Many people don't realize how tough those affected are, even if no one believes we're feeling bad!
Have children and 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 harmlessly starting once a month, now every day since the start of her period in January this year, with dizziness, stomach ache, photophobia, sensitivity to noise, and just plain tired . So far only comments like “it's stress-related, psychosomatic” we can't hear that anymore. None of the doctors take it seriously. My child is suffering terribly from this. In January we have an appointment at the University Hospital Headache Clinic for Children, our great hope. As a mom, I cry a lot because I can't help her. Not nice :-(((
Then there are a few more comments from me:
“What happened in your childhood that made you get migraines to get attention?” (original sound: doctor at a rehab)
“You’ve been working towards disability pension for years, you’ve been planning this for a long time!” (O-tone rehabilitation clinic as above, but head doctor)
After pointing out to my family doctor that migraines are not a psychosomatic illness, his reaction was to roll his eyes, look at the PC and “Well, that’s what YOU might think.”
“Have you ever tried aspirin? Well, if that doesn’t work, then take two!” (I was taking 8 aspirins a day at the time because no one told me about triptans) (was a gynecologist)
“You’re just getting yourself into something!” (ex-husband)
"Migraine? I don’t know, what is that?” I've heard that before, wow.
“Headache? Children don’t have headaches!” (old people who were surprised when I had migraines when I was 5)
And many more comments… plus the ones mentioned above…
Since I was 4 years old, I've had migraines at joyful events (Christmas, birthdays, trips on vacation) - comments from the doctors I've seen: it goes away with puberty.
Puberty: Migraines were triggered monthly by periods for about 4-5 days - doctors' comment: it will go away with the end of puberty.
From the 20th year onwards, migraines were also triggered by ovulation > each time about 3 days on one side, and then the other side > 2 times/month 5-7 days of migraines, so one good week, one bad week.
Doctors' comment: Pregnancy may be the solution.
Pregnancy: completely uncontrolled, severe migraines with little interruption.
After the birth the “normal” rhythm returns. After a total operation at the age of 48, no more rhythm, 3-5 days of migraines, about 3 days completely symptom-free, etc. under hormone replacement therapy.
Unfortunately, it doesn't work without hormones because then the triptans can no longer combat 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 torment and the desperate efforts to cope with the load of tasks (household, child, work) in the seizure-free times often affected me, especially during the time without triptans (until 1992). make one think of suicide.
I have been receiving a partial disability pension for 5 years. My family doctor at the time said that you wouldn't get a pension for migraines because you would have to be sicker. Thank God I didn't let myself be intimidated and tried it - with success. I also received a GdB of 30. I now have more time to live, especially since my son is also grown up and therefore the opportunity to do something enjoyable again, as long as I avoid alcohol (a glass of wine with a good meal would sometimes be nice :-( and maintain a consistent day-night rhythm.
Very dear team!
Your article hits the nail on the head. I've been hearing this and other advice since I was a child, and now I don't always react very politely. Because anyone who is familiar with this pain has already intensively looked into all the options for relief. It's nice to read that the same well-intentioned tips are always given to us. The latest trend seems to be the vegan diet, which is recommended to me from all sides, but thanks... I don't want a recipe for vegan Bolognese sauce :-))
Thank you for this article,
I've heard it all several times and even more: "You're taking too many pills" You look good, it can't be that bad" (comments from colleagues) Even my (now former) family doctor: ” I also often have migraines and am depressed and still have to work, so Mr. Purmann can pull himself together.
(Reason for changing doctor) I work as a carpenter, which means heavy lifting, machine noise, driving a van….
It took many years for my colleagues to fully understand the seriousness of the situation.
Now with GdB 50% over 1 year, constant headaches + 10 – 15 migraine days / month, sick note since July 14 and advice from the neurologist to apply for a pension, my colleagues see that there is something to it.
To all migraine sufferers: We are not malingerers! We are fighters!
Hello everyone, I'm 54 years old and have been suffering from severe migraines since I was 16.
For many years I didn’t even know it was a “migraine”.
I went to many doctors, often had EMERGENCY DOCTORS in the house on the WEEKEND, got something injected and was working again on MONDAY.
I was called a malingerer by a doctor and then often remained silent and retreated to my bed. Even during my pregnancies, I wasn't spared. I wasn't able to take part in many of the festivities... I spent so many days and nights in bed, repeatedly swallowing pills, until a neurologist prescribed triptans for me about 10 years ago. Now I'm dependent on them tablets and have migraine attacks almost every day, mostly at night. Sometimes I'm depressed because I just can't take it anymore, maybe I can go to this clinic, that's my big hope.
Warm greetings from Kiel
Britta Wollesen
Thank you Prof. Göbel for this successful and encouraging article.
I have often heard the sentence: “You just have to let go”. This also came from a doctor whose therapeutic approaches did not bring any improvement. I took her advice and never went there again.
Yes I know. Sufficient. The best was “Go for a walk by the lake and watch the little ducks… or the swans…” Something like that makes me sad, but also sometimes just angry. When I'm in pain, I don't give a damn about the stupid birds and sometimes comments like these make me think of my slap tree.
I'm 14 and I'm currently on treatment and I have constant migraines, which is really stupid. The carers think I'm sitting there, they just say that I don't want to take part, that's how the crap works. Migraines do they go away when I get older?
The worst thing for me is that people don't take me seriously, not even my daughters... it's all psychosomatic...
Yes, I've heard all that too.
I found such clever comments from experts particularly bad. A psychologist said that a migraine would be an orgasm in the head.
At that moment I was cynically quick-witted —- What a great orgasm experience with migraines up to 10 times a month in 34 years - WOW!
Keep it up in Kiel!!!! I was there and the understanding there and my increasing understanding of the context and acceptance of the illness helped me a lot. Thanks!
Thank you very much for this wonderful and relevant article.
That's exactly how I feel. I feel completely misunderstood by those around me and not taken seriously by the doctors. The article should hang on the wall in every doctor's office.
Dear Prof. Göbel,
It's nice that you list it like that!
I have had severe migraines since I was 6 years old (i.e. for 39 years) and have heard all of these comments - many more than once! The bad thing is that at the beginning you listen to these great tips... later it's just annoying and you have to carefully and gently explain to people why they don't follow your tip straight away - otherwise they'll be offended and you'll be offended It's your own fault if you continue to suffer. So I've gotten into the habit of always answering that "I've already tried everything and unfortunately it didn't help."
Please keep researching and publishing! Thanks!
I have had migraines since I was 27 years old.
Someone who hasn't had that can't understand it either. I still suffer from it today.
I'm 62 years old and still have it. I have never been to a pain clinic. I'm just labeled as a psycho.
The comments I hear are not without their own. I suffer from migraine attacks. But without a headache. I have all the other symptoms. My doctor explained to me that migraines are a medical condition and the pain is just one of many other symptoms. I just don't have this one symptom. That's why I keep hearing that I don't have migraines at all.
I can only confirm that many people think migraines are not that bad.
I've had it for 25 years, and I noticed that it was also related to female hormones when I had a myoma in my uterus. 4 years of irregular bleeding and migraine attacks every time. After the operation, the migraine attacks also subsided.
I'm 53 today and it started unspecifically in my first pregnancy. The migraines have slowly become noticeable.
I still get attacks today. I recently read that I could also be at risk of a stroke, which is why I'm thinking about looking for a pain/migraine specialist here in the Ortenaukreis. Greetings Regina
@Pia: Be happy for your daughter! I was migraine-free during both of my pregnancies and subsequent breastfeeding. Then the migraines came back...
I keep hearing: You just need to drink more water.
I can hardly listen to other people's good advice anymore, I've been suffering from
severe migraines for 45 years, 8-10 attacks a month and sometimes I don't feel like living anymore. I'm such a fun-loving person, nothing is allowed, not a glass of wine, not Go to bed after midnight, no loud music, don't laugh too much otherwise you'll be in bed again for 3 days with lots
of triptans. What kind of quality of life is that? If I were sure that I only
had it every now and then, I would lay myself on every operating table.
Lg.LeonieHansen
Thank you very much for this incredibly precise list!
I couldn't believe that anyone even understood this clinical picture.
You constantly have to explain and apologize. One of the very common pieces of advice mentioned above for me is: “And have you tried this great oil from Canada or the magnetic bangle from Turkey?”
Your number 6 with the hobby fits in with this. For example, you don't hang an amulet around the neck of a person with pneumonia to cure the inflammation. It's a nasty disease that's difficult for outsiders to recognize and really brings you to your knees.
LG to Kiel
A pharmacist once recommended nasal spray to me because my nose was often blocked.
Recently heard from the family doctor: You need to calm down!
Thank you very much, Prof. Dr.
Göbel for your emphatic article. You are the doctor who presents these sufferings as they are. That feels good! As a chronic migraine patient, I have had to defend myself for decades, even though I have used every treatment option. Perhaps one could add as a point: “After menopause, migraines disappear”.
Unfortunately that's not true either. I wish everyone affected many pain-free hours and thank you again to the clinic in Kiel.
In the 1970s, I was told in a big city hospital: “You are a luminary killer,” because after six months of treatment by the professor there, my migraines had not improved. I denied the gentleman any professional competence.
Pfffff…. That was my family doctor's reaction to my intention to apply for GdB. Later I was awarded 50% right away. My neurologist wrote the report.
Unfortunately everything is true.
I also think it's common: you take too many medications! Although, according to the information on this site, I am fortunately far away from medication-induced headaches. Migraines seem to put a strain on the environment (unfortunately also on my husband), which in turn puts a strain on me.
The sentence: Migraine is an independent neurological disease!
comforts me a lot. I would give a lot to introduce myself in Kiel. It's just so far away! But I am very grateful for the app, the “triptan threshold” and the lists and information!!!!
I don't have a headache, but I have similar pain in my back and I know this “advice” well enough. Thanks for this article. I could imagine that this would have saved me many years of the strangest therapies. Maybe there is a way for me to go to Prof. Dr.'s pain clinic after all. Göbel.
Hello everyone here!
Thank you for this article, it is very relevant and helpful for me as a sufferer.
I'll show it to my girlfriend.
I regularly hear from her “things have to get better with YOU!” Kind regards,
Gitte
The following conversation: How are you, what are your depressions doing? / I don't have depression, but migraines! / Oh, just migraines!?... Have you already been to a homeopath???
The bad thing is that stupid statements like this about migraines or other types of headaches come not only from laypeople, but even from experienced doctors.
All very true words from the professor, I have heard them very often, too often, in my 42 years of migraine practice!
But I have one more piece of “well-intentioned advice” to add – migraines go away with sex!
With this in mind, many greetings to Kiel
Finally someone who understands us as those affected, I have been suffering under these circumstances for many years, I am going to the pain clinic soon and hope that I can get help. Thank you for the open words!
1000 thanks. Everything is so true. The comments/well-intentioned tips/questions as well as the explanations.
Have you already been to an osteopath?
Your head doesn't sit properly on your spine.
Why don't you stop working? (I love my work! It's my dream!)
If you have a dog, the migraines go away because you have to go outside. (We now have two dogs, but the migraines haven't left us!)
That was the recommendation of a physiotherapist during the treatment.
These were some of the tips I got
You need to eat more potatoes.
You're completely acidic. Globules! Please take globules!
I've been living with migraines for about 16 years now and I know these sentences all too well! I'm going to the headache clinic soon and hope that they can help me too. I've heard a lot of good things. I think anyone who's never had pain like that just can't imagine it and then they say things like that.
Thank you very much for this article.
It would be nice if the integration office recognized this in the same way and could substantiate this with a degree of disability.
I have been suffering from migraines since I was 14, which is now more than thirty years.
The migraine was listed with my other limitations (spine and knee), but did not receive its own percentage points.
Although given the frequency of the attacks you can easily calculate how much life you lose. Quite apart from the sayings of our “dear” colleagues… if it were recognized with percentages, the acceptance of this disease would be significantly higher. Maybe migraines will gain this level of acceptance in a few years...when even more doctors deal intensively with this topic and it also gains the importance it deserves in studies. With this in mind, keep it up, Prof. Göbel.
My migraines have gotten significantly better since I started paying attention to my diet. The connection with the bile is definitely not obvious, because I react to fatty food with severe migraines. Since I started paying attention to my diet and my bile, I've gone from having weekly attacks to once or twice a month. Otherwise, these are exactly the things you hear when you have a migraine!
@Lina
Yes, exactly the salts. And yes, the bile.
As if you weren't doing everything you could to avert every attack, no matter how small.
Almost as if it was your own fault.
It explains a lot and may be helpful in clearing up some misunderstandings.
The biggest misunderstanding: Migraines are not “JUST” headaches!
Many people don't understand that the whole thing can't be done with a tablet. After all, it’s not just a “hangover.”
Everyday life has to be designed around migraines.
– diet
– rest/sleeping times
– avoid some sports
– avoid social activities (festivities, going out
…………… (all of this and more in relatively pain-free periods)
During an attack, the lost time runs out.
Time that you would like to spend on your had family.
Unfortunately, you always have to “explain” and “apologize” for your migraines.
Because it’s not “JUST” a headache.
You can't immediately tell that someone has this disability.
It's not as obvious as someone missing a body part. But it is indescribable pain and daily stress.
The advice “strike” point 11 was even given to me by a medical officer in the city of Frankfurt a. M., combined with the accusation that I had already come to terms with my illness and that I was therefore not at all interested in a cure.
By the way, thank you for the very accurate summary. I feel very well understood.
I've never given my daughter such stupid advice before, I know migraines from my colleague, so I know how I had to deal with her, but the funny thing is that since my sweet grandson arrived, I've never had any migraine attacks from her again heard.
Thank you for these great lines, I felt very understood. As someone who has been affected for many years, I would like to add some nice tips:
Take globules, Schüssler salts or Bach flowers!
Do you always have to put up with all this chemistry?
Drink more, headaches almost always only come from drinking too little!
Migraines come from bile, you eat wrong.
Don't party so much, go to bed earlier!
Migraines only come from the neck!
Do something about it and you'll be free of the pain! There's something wrong with your inner attitude, you're always so negative.
I can only agree with Christina about the diagnosis “cluster headache”. What did I have to listen to until I got the correct diagnosis from Pr:Dr:Göbel.
Thanks!!! People often portray you as a malingerer!
Excellent! I think I’ve heard every single one of these “tips” at least once.
It would be great if you could post this article directly to Facebook
Top! Could this also be transferred to cluster patients? How much you would like to keep that in front of those around you...
Dear Prof. Göbel,
Thank you very much for stating these facts so bluntly and publicly. It would be nice if those around you, whether private or professional, would handle the topic with appropriate sensitivity. Warm greetings to Kiel!
Thank you thank you thank you!!! Finally it gets to the point...