Cluster headache – those affected and their relatives find words

Cluster headache – those affected and their relatives find words

Our mother tongue doesn't know it: cluster headache. Cluster headaches are one of the most serious pain disorders in humans. Unimaginably severe pain attacks lasting 15-180 minutes suddenly escalate on one side in the eye area, forehead or temple. The frequency is up to eight attacks per day. In addition to the pain, redness of the eyes, watering of the eyes, nasal congestion, runny nose, increased sweating in the forehead and face area, constriction of the pupil, drooping of the eyelid, swelling of the eyelids and physical restlessness with the need to move occur. The attacks occur frequently over a certain period of time, usually over an active period of around six weeks. The English language speaks of cluster headache, literally translated as “heap” headache. For some of those affected, there are headache-free weeks or months between these temporally grouped headache attacks. Others don't know such headache-free intervals. According to various studies, the frequency of cluster headaches in the general population is approximately 1%. According to a survey by cluster headache self-help groups (CSG) in Germany, on average it takes eight years until the correct diagnosis is made. Cluster headaches are incredibly painful. Additionally unexplored, undiagnosed and untreated, it is one of the most vicious and at the same time useless pain diseases in humans. Social isolation, personality changes, fear, depression, despondency, anger, sadness, despair, giving up the will to live are his diverse companions.

Cluster headaches can usually be diagnosed quickly. And there are very effective treatment options. However: Adequate diagnoses are often made very late or not at all, and effective therapies are therefore not available or are only initiated after many agonizing years of a pain odyssey and serious complications. In Europe, the individual level of experience, the organization of the healthcare system and, unfortunately, often pure chance decide what the treatment looks like. Science often arrives very late in care. This can also create insurmountable obstacles to effective treatment, which could often have been avoided with timely therapy. Others have to go through discouraging battles for scientifically proven therapies and ultimately give up: although effective therapies are known and described in guidelines, they are often not approved for pain without a name. Even in training and further education, this pain without words is only found marginally - if at all. Disability law does not recognize pain without law. So it all too often defies the relief hoped for in an insidious and insurmountable manner with extremely strong defenses. And those affected continue to suffer, alone, without confidence, disastrously from senseless pain attacks in despair and hope that has died cold.

The German language has no name for this pain. It is the pain-nameless. There is pain illiteracy.

Cluster headache is scientifically classified and diagnosed very precisely:

Here you can read reports from authors who have given their cluster headache a name in connection with the treatment at the Kiel Pain Clinic. You have found words. They call the pain by its name:

Here you can read two interviews from those affected and their relatives that were taken in connection with the treatment in the Kiel Pain Clinic (from Hartmut Göbel: Because I have to live with pain - Interviews with pain patients )

Nadine I. (42) administrative employee and her husband Klaus. Diagnosis: cluster headache for eighteen years

Nadine:

It was eighteen years ago on February 26th. I woke up at 2:30 a.m. in unbearable pain. I didn't know at the time that it was my first cluster seizure. After half an hour the spook was over. But it repeated itself the next night and the night after that, and it continued like this until April 15th. After that it was quiet until the next February. This went on for several years.

Klaus:

During this time we didn't even notice that there was any regularity. You don't keep a pain calendar from the outset, and you don't easily come up with the idea that there is an annual rhythm. We had never heard of Cluster before.

Nadine:

After five years, I finally went to the neurologist. I described the symptoms to him, he took his thick book, leafed through it and said: “What you're telling me can't actually be true. Only men between 40 and 50 years old get this. Women don't have that, and there's no medication for it." I thought I was the only one in the world who had something like that. Once I went to the hospital because I couldn't take it anymore, but they sent me home again.

Klaus:

1999 was a particularly bad year. Sometimes my wife asked me to stay with her because she was afraid she wouldn't be able to stand it. The only help I could give her: I monologued throughout the entire pain attack, telling her what we had done the previous day and what we were planning to do, about the children, about the house, about work... I talked non-stop and... never expected an answer, at most a gesture. So I distracted her a bit. The background noise was good for her. Later I tried to help her by accompanying her to the doctors, telling them my observations and suspicions and asking a lot of questions. But very few doctors can accept that relatives are concerned. You can't expect me to stand idly by and watch my wife's suffering!

Nadine:

I wanted to pull my teeth with pliers to relieve the pain. Finally my doctor sent me to the spa. The application stated that I was mentally exhausted, which was true, but in the spa clinic they checked me for alcohol and pills. At first I didn't understand what was going on, then I told them that I had clusters, but they couldn't do anything with that. They continued to monitor me and sent me for psychiatric consultations. The cure was completely for naught. Treatment by the neurologist didn't help either. For nine years he tried a wide variety of medications, increasing them from mild headache medications to strong migraine medications. He only gave me an effective remedy after it had been on the market for years! He was considered a luminary in his field, and that's why I stayed with him. Too long, I think today. I once saw a pain therapist who recommended oxygen. But I couldn't imagine that, so I didn't go back. If only I had listened to her!

Klaus:

The worst thing for me was this insane helplessness. As a man, you have this guarding instinct and want to ward off any danger from outside. You feel responsible - and here was a situation in which I couldn't do anything. My fragile wife sits there and dissolves in my presence without me being able to stop it! That was incredibly stressful for me.

Nadine:

At first I ran around the apartment like a crazy person during the attacks, but then I realized that it was better if I stayed still. Then the tears start streaming down my face, but I don't get upset and keep my nerve. The pain never stops for a moment and I am fully conscious the entire time. If I'm tired from sleep deprivation at night and lie down at lunchtime, it triggers another attack.

Klaus:

You can also see my wife's attacks on the outside: her right eyelid becomes thick and her eye waters...

Nadine:

... and I have vision problems. The entire right side of my head hurts unbearably, including my teeth and ear, and my nose feels sore from the inside. It's as if the skin on the side of my face has been peeled away; it burns so badly that I can't touch myself there. Over the years the pain got worse and worse. Every time I thought that there couldn't actually be an increase, but that was a mistake. The duration of the attacks also increased to four to five hours. During this period I am very exhausted and overtired during the day, especially since there is still pain in my face during the day, something like a sinus infection above and below the eye. This is the so-called residual pain. But I didn't know that term back then.

Klaus:

We tried to find a cause for the pain and analyzed our living situation. Was there perhaps formaldehyde in the furniture? Or could it be something like a pollen allergy? The pain always occurred at the same time of year, so this assumption made sense. So I tore out all the bushes in the garden in front of the bedroom. Or was the location of the bedroom to blame? So we moved within the apartment. Cool temperature and fresh air was what my wife craved during the attacks. That could have been a clue. Today we know that oxygen inhalation helps.

Nadine:

I didn't even want to go into the bedroom anymore and hated my bed because that's where the pain started during the night!

Klaus:

During the pain phase, you can't even think about the pleasant things that usually happen in bed. That's when life changes completely. Everything that otherwise seems important to us becomes a little unimportant! Bombs could fall around the house - we wouldn't be interested in that at all! But marital life is not over forever, it is an episodic illness that will eventually be over again. You learn to live with that. We are now in our nineteenth year of marriage and this does not shake our marriage. My wife is also there for me when I have something.

Nadine:

It was especially difficult when the children were still small. I had to get the neighbor to help me get the children ready for school. But over the years it has worked out well. The children understand it. I explained to them what kind of illness it is and they have been incredibly supportive. However, we have only now found out how much the little one is suffering. She's 16 now and doesn't know me any differently, but when I have the bad phase she can't concentrate on school anymore. That hit us really hard! She didn't let anything show at home and ate everything up. Even though I don't scream! I've learned to sit still and just rock my upper body back and forth a little. Our daughter talked to the teacher and now she is only getting half grades during the seizure period. She is actually a very good student, but during this time she slumps extremely. She's afraid that I might harm myself. There were also problems professionally. Whenever I took sick leave, the boss called me in for an interview and I didn't dare tell him what I had. That was an unlikely pressure. At some point I told him, he was very nice, but said that the illness would definitely not come back. People just don't understand this disease. We later found out that you can apply for severe disability, and I got 50 percent. Things are going well in the company now.

Klaus:

My employer also knows and my superiors understand that I sometimes leave work at short notice and go home to my wife.

There were also phases in which she had peace and quiet for two years. Then we thought: this will never happen again! Today we know that it is a mistake to suppress the illness after the pain episodes. Then you don't want to hear about it anymore or talk about it anymore, you just want to forget it. You should seek information and help at a time when you feel healthy and strong.

A few years ago I bought a computer and went online for the first time. There I found the homepage of the cluster self-help organization. I clicked into the forum and lo and behold: there are so many people who have this disease! I was able to ask complete strangers questions! These weren't arrogant white coats, they were just normal people! Day and night I sat in front of the computer and printed out files that I took to the family doctor. She took it very well, read everything and kept asking if I had anything new. The organization was still in its infancy, but there were already several local self-help groups across the country. This brought together the collective experience of the members who had already done the whole “doctor hopping” thing.

Nadine:

We were eager to finally meet fellow sufferers in person, so one day we set off for a regional meeting in another state. We felt like sensational tourists! And then we saw them - normal people, with a cigarette in the corner of their mouth, telling jokes, chatting. So I met other cluster patients and their relatives for the first time, and that triggered an indescribable feeling of happiness, relief, expectation and emotion! There was the tangible certainty: I am not alone! Lectures showed what clusters actually are and what happens chemically and physically in the head during seizures. And I got practical tips from other people affected. It was fantastic!

Klaus:

I've been involved in setting up a self-help group in our region, and I spend a lot of time sitting at the computer and exchanging ideas with others. We have contacts with the major pain clinics and hope to find out quickly when there are advances in medicine. It takes a lot of time, but there are now more than 45 people who rely on me. I am needed. That's all I can do for my wife. I admire her. In the meantime I've gotten to know a lot of those affected, including strong guys who collapse like little children and suffer loudly. My wife keeps her composure. On the other hand, a man in pain is less accepted than a woman. If he goes out and says that he has a headache, his boss will think: Guy, you probably drank too much yesterday!

Nadine:

Today I treat myself during the attacks with oxygen inhalation and a modern migraine medication. This doesn't prevent the pain, but it shortens the duration of each attack. This treatment method is not yet ideal because I have to take a lot, possibly more than is healthy. After the pain phases stretched from February to April for years, they started in January last year. But they weren't quite as violent. I have come to terms with the fact that the disease is incurable and that I have to live with it, but I am hopeful that research may eventually provide more help.

 
Max P. (41) hotel specialist and his husband Louis. Diagnosis: cluster headache for eight years

Max:

Unfortunately, my cluster is a very loyal enemy. I keep records and do quarterly evaluations, after which the frequency of attacks is currently slightly less than one attack per day.

Louis:

With a slight tendency to rest periods in summer.

Max:

It then takes its revenge in the active phases, in which the attacks come more frequently and more violently. It started with pain in the upper and lower jaw that radiated to the entire left side of the head. Thinking it might have something to do with my teeth, I gradually had four roots extracted, but the pain remained. In the beginning they occurred two or three times a day for exactly half an hour and then not at all for a few weeks or months. That's why I wasn't too worried at the time. During the breaks in pain, I gathered strength to try out new doctors, but none of them could help me. Later it got worse. The attacks came mainly at night, sometimes extremely violently five or six times. It started in the evening and the last attack was between 6 and 7 a.m. in the morning. The pain is stabbing and burning. They move from the jaws behind the eye. This remains bearable for a short time, then it goes through the entire side of the face, from the hairline to the neck, and I can hardly tell where the center is, perhaps somewhere in the temple and eye area.

Louis:

From the outside you can see it a quarter of an hour beforehand. Max's face becomes somewhat asymmetrical. The left eye becomes smaller and changes shape slightly, it turns reddish and watery. The eyelid begins to droop, the entire face becomes rigid and expressionless, it suddenly appears crooked, and the left side of the face loses its color.

Max:

Then it starts with sweats that are so strong that I collapse somewhere and tear my clothes off. The slightest touch, even if it's just a shirt on the upper body, is unbearable. Then I walk in circles. Always in circles, in a darkened room in my apartment. I am very sensitive to light and when a car headlight comes towards me outside at night, it increases the pain. Immobility is really bad. I once had an attack on a plane and there was turbulence so I couldn't even get up and disappear into the toilet, at least for a short time, to be alone with my pain. There I was, sitting in the middle of a row of three, strapped in and on the verge of going insane.

Louis:

All in all, Max tries to keep the enemy as short as possible...

Max:

... by following new therapies very conscientiously, even if I don't know if and when an effect will occur. I'll stick with it until I can prove from my records that it doesn't work. The disease is hardly researched because there is no money to be made from it. There are not nearly as many cluster patients as there are migraine sufferers, for example. That's why so few doctors know about it. I got my first useful information from the Internet; I came across the self-help group website and lots of literature tips. It was only then that I realized it was Cluster. So precise, to the point, it blew me away. With that, I went to my family doctor and asked him: “How come the doctors don’t know this?” He then sent me to a pain therapist. We work hand in hand. She doesn't tell me what to do, but we experiment together. This has been going on for about a year and a half now. Contact with the members of the self-help group is also helpful and good for the soul. There is no one with whom you can exchange ideas like those affected. Looking into the eyes of a total stranger and starting a sentence that they can finish - that's incredible!

Louis:

What haven't we tried in all the previous years! At the very beginning I even suggested to Max that we separate for six months. That was before we even knew it was called a cluster but we already had a lot of doctors behind us. At some point you start to doubt everything, including your relationship. I thought, “The man has been healthy for thirty years, has known me for a few years, and suddenly becomes ill. Maybe it’s just me!” Of course I was afraid that he would actually accept my suggestion…

Max:

Without the partnership it would be difficult. That's a huge support that I have in the background. For example, if we're out to dinner with friends and an attack starts, all I have to do is wink at Louis and he'll know immediately. Then I don't have to explain anything, I can just disappear straight away and take care of myself. I still have a guilty conscience. It's not nice to burden Louis with these explanations again when there are people who haven't experienced the situation yet.

Louis:

Outsiders probably think I'm pretty cold. If Max gets caught on the road, I let him go home alone, or he stands in a dark gate and people don't understand that I'm not running after him. Then I don't feel like explaining things.

Max:

I find children fascinating. If you tell them: I'm in pain and want to be left alone, they understand that. They absolutely respect that and don't ask if they can help. They have an understanding that adults often lack. .

Louis:

As a partner you have to learn that there is life outside of pain. We relatives occasionally talk at cluster meetings about how we deal with the illness, and I think it's wrong that some people give up their own lives. Of course you should help where you can, but you shouldn't neglect your own hobbies and interests.

Max:

I agree with that. And I don't think there are any fundamental differences between homosexual and heterosexual couples in this regard.

Louis:

First you try to comfort your partner during the attacks, which is not possible. Max and I now also know this from others: physical proximity during attacks is completely undesirable. Only when the pain has subsided can I hold him again. It wasn't easy to accept that! My husband is suffering and I have to accept that I can't help. Max's withdrawal in this situation is not a withdrawal from me. It is important to talk about it after the attack and to find words for your own feelings.

Max:

I have to avoid situations that trigger an attack. I now know a lot of triggers from hearsay, but thank God I don't believe most of them, otherwise I would limit myself too much. I know that after a while noise can trigger and light reflections. This depends on the phase. If I haven't had an attack for two or three days, I don't dare go to restaurants where I know there is a high noise level. For example, during an attack phase, I don't go to restaurants that have stone floors. Going to the discotheque is out of the question, nor is going to the cinema. The light shining down from the screen is too bright. When I'm in a phase of pain, a commercial break on TV is enough to trigger a new attack. This is due to the quick cuts and the change between light and dark. What I can tolerate is the opera. During the phases in which I feel quite well, I dare to do things that other cluster patients definitely wouldn't do, for example walking around the fairground. I want to live! Then sometimes I don't care about the cluster. But there will definitely come a moment when he will answer: Hello, I'm still here too.

Louis:

The fight with the health insurance companies is bad. How long did it take until Max finally got oxygen - I think that's unbelievable!

Max:

If I inhale oxygen right at the beginning of an attack, it sometimes helps a lot. I'm currently trying to prevent it with a medication that the doctor isn't allowed to prescribe to me according to the current law because it's a blood pressure lowerer and is used to treat cardiac arrhythmias. But it has been found out that it helps with clusters, but unfortunately it is not yet approved for this. The doctor was kind enough to tell me that I had problems with my blood pressure and needed this medication...

It's also difficult professionally, especially at the moment. I worked in the hotel industry, but that went downhill rapidly after 9/11. Now I'm looking for something new, and of course the cluster limits me a lot.

Louis:

Still, you've had something of a career.

Max:

A pretty steep one, actually. It wasn't interrupted because of the cluster but because of the collapse of the industry.

Louis:

I'm confident you'll find something equivalent. You are a strong personality, perhaps you have even gained strength through your illness.

Max:

I don't know... Lately I sometimes cry during an attack because I feel like it helps. Actually, I'm not the type of person who tends to cry. Not because it doesn't belong as a man...

Louis:

 …a Bavarian doesn’t cry!…

Max:

...I just didn't feel the need to cry. Strength? Is there strength in learning to live with an illness?

Louis:

I think Max's character has remained the same. He says what he thinks, also in relation to the illness, very dryly, very matter-of-factly. And he expresses exactly what he wants. Nothing has changed about that before. He's much more direct than I am. And he hasn't lost any of his enthusiasm. Of course during the attack, that's clear, but not otherwise. Especially the big events: weddings or vacation trips, which are attended to mercilessly - I'm the one who says: "Man, November is a bad time, wouldn't we rather stay at home?" Max simply doesn't accept that. We are flexible. If a hotel is too noisy, we look for another one. That doesn't stop us from driving. If he can't retreat, I'll just sit upstairs in the dark room. Then of course I suffer when I see and hear how he reacts to the pain.

Max:

If I give up these activities, then I have lost. As long as I can transport my medication, we can go wherever we want. I used to sometimes think about suicide, but the time between attacks is just too good.

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8 comments

  1. Uwe April 30, 2024 at 7:27 am

    I am 54 years old and have suffered from cluster headaches since I was 28.
    However, I only got the diagnosis after about 7 years; and just by coincidence... My current wife and I were desperate because it bothered both of us (perhaps you even more?) that I didn't know what I had and everyone just "took" it as a migraine/tension headache because no examination (dentist, ophthalmologist, ENT, MRI, CT and whatever) showed something tangible. Now comes the coincidence:
    My family doctor was on vacation and I went to her representative to get a prescription for the migraine medication that I had been prescribed for a while and whose effect I was not very convinced of, as the effect sometimes takes two or three hours intake occurred.
    (Now, of course, I know why that is.) She asked me about my symptoms, thought for a moment, and then thought out loud, “That sounds familiar.
    I read about it once. This could perhaps be a cluster headache,” but then left me with question marks. Of course, when I got home I immediately went online, read what CK was and actually thought to myself, “That could be it.”
    At the beginning of the 2000s it wasn't that easy to find specialists (close to home), but I found one in Aachen, where I got an appointment relatively quickly and heard the clear words during the anamnesis conversation: “You have a cluster headache.
    No doubt." Finally the child had a name and a load off my mind.
    Of course, he immediately prescribed verapamil and the complete equipment for acute oxygen therapy, but unfortunately after a few attempts I realized that oxygen wasn't helping me.
    Then the next step was to try lidocaine, but this was simply impossible for me during an attack because I have to be extremely active during one.
    Next was the offer of Sumatriptan Inject, which I politely declined at the time because I'm afraid of injections.
    Then I used nasal spray, which finally helped me to stop attacks.
    Unfortunately, it always only takes 10-15 minutes and unfortunately it is also not reliable. The next time I gritted my teeth, I had the pens prescribed and I completely panicked the first time I used them, but was “positively horrified” that the pain disappeared after about 1.5 minutes.
    I had found “my” remedy. I then moved for professional reasons and immediately asked my new family doctor whether she was familiar with the issue or the disease, but of course she could only say no.
    She gave me the tip that she knew a good pain therapist in the hospital in Cologne where she had worked during her training and that I should contact him. I immediately emailed him and received a positive response the next day that he was treating several patients with CK.
    Shortly afterwards I met him and have been in his hands since 2013.
    A few years ago I found the CSG website and dug through.
    There I found an article about a pharmacist who, as the only one in Germany, produces sumatriptan syringes “on request” and with a prescription in the desired strength (1-5 mg sumatriptan), since small studies have shown that smaller amounts of active ingredient can also be used , than the 6 mg in the pen, can be successful. -There was also a note that the KK would cover the costs (minus your own contribution).- I presented this report to my pain therapist and he immediately said, “Let’s try that.”
    and prescribed injections of 2 and 4 mg. Ordering is quick, as it only takes a maximum of 3 days from sending in the prescription (via photo and then directly by letter) to delivery by express parcel.
    2mg and 4mg help me quickly and reliably.
    However, I have the feeling that the lower the dosage, the greater the chance of a new attack in a shorter period of time. There are now also 3mg pens, but they are not approved for CK and can only be prescribed off-label.
    I've given up on that idea. Ordering from a pharmacy is also more convenient when it comes to quantity. Not only 3 pieces (pens) are offered in the package, but, depending on the strength, up to 24 pieces. Which is very easy on the wallet. (For pens per pack of 3, a full additional payment is required.)

    Last year, however, the CK was so bad that I went to the CK Competence Center in Essen. There I experienced an understanding of my illness that I had never experienced before. EVERYONE I talked to showed it. Not a single person looked at me indifferently or questioningly... Unfortunately, they couldn't help me with anything other than ordering injections directly from the pharmacy by fax, which were there the next day.

    I have now come to terms with my “enemy” and know that at some point he will come up with the idea of ​​interrupting the “fire breaks” again and attack me with full force and at impossible times, but I am armed with sumatriptan injections; Even though these unfortunately don't always fend off an attack, I'm still happy with my “defense line”.

    Keep on fighting. Cluster is an a-hole and doesn't deserve to succeed in screwing up our lives.

  2. Rainer Waddell-Siber April 11, 2024 at 7:47 am

    Hello, I have had very strong headaches for a long time that keep coming back and nothing has helped me. Then I went to a doctor who diagnosed me with clusters and I got relief with oxygen and sumatriptan, not always but often. The worst thing about it all was that no one believed me that the pain was that bad except my children and my wife who were always there when it was so bad. There were times when I didn't want to anymore, I tried to kill myself but my family was the one who saved me from death. And now years later with pain that I have under control because I know in the back of my mind it will go away again. And I hope that it will be over when I turn 60, that's my hope in 1 month.

  3. Jochen Discher March 21, 2024 at 8:45 p.m

    Thank you for your experience reports.
    I'll make it short.
    It took me at least 20 years to get diagnosed. About sinuses, toothache, Lyme disease, brain tumor, migraines, trigeminal neuralgia, paroxysmal hemicrania up to the diagnosis of clusters. It took so long to diagnose that the cluster is carved into my face.
    Drooping of the eyelid, constricted pupil. And since I am episodically ill, every few years I no longer want to wake up in the morning. I can't deny depression during this phase. What helps me is verapamil, cortisone, and sumatriptan, but above all oxygen!
    I have tried a few other medications over time and have tried them again and again.
    Many of them were not beneficial to my general well-being and quality of life. Even if I have clusters, I want to live. Well, at least when the pain isn't there. But oxygen helps.

    The worst experience I've had and a professor will probably come along and say that's nonsense and you can't prove it.
    I probably inherited it. My daughter was recently diagnosed with clusters. Family disposition, genetics. All nonsense doesn't happen and if it does, it disappears little. It happened to me. Crap.

  4. Nicki July 25, 2020 at 8:17 am

    I was born in 1994, female. It started at the age of 14. At night I was woken from my sleep with terrible pain. I thought: oh, a migraine attack. This was diagnosed when she was six. Well, it went away after about an hour. Took ibuprofen but it didn't work. It was gone… I thought. The next day again.. to the gynecologist.. She said migraines with periods.. Good, I thought. That's how it will be.. from then on this continued. At some point it even reached the point of riding a bus when a window was open and there was a draft. I never drank alcohol, let alone smoked. Then I had visitors and, yes, a test of courage, smoked weed. Well cluster came at night, I took a few puffs it worked.. initially. Until I graduated from secondary school, I mostly got into trouble at home. I shouldn't simulate like that because I don't feel like it... I was a good student and always hardworking, but I was so embarrassed in front of my classmates... my grades went downhill. I started hurting myself. Had to go to hospital. It was called attention. Nobody listened to me... I packed my bags and moved out. I was homeless at 15. I celebrated my graduation under the bridge. Well, whatever, I thought to myself, I know I'm not lying. Spent a few years under the bridge to get my high school diploma. Meanwhile, cleaned at Omis and later worked full time at mcces at night and studied at school during the day. Met the family doctor, described it to him, and he gave me sumatriptan. Migraine, he thought. Well I wanted to try it and there was relief, relief for the first time. I came to his practice to thank him. Suddenly cluster, so strong, first stroke. At 18. Hospital didn't come to a common denominator. So I completed my high school diploma in a detour. And I always accepted my depression and suicidal thoughts. I'm 26 years old, I don't have any energy left, I have a wonderful daughter and I want to go back to work and live life for myself. I wish all those who suffer and our partners: Please stay strong: he brings us to our knees, but never give up for him.

  5. Thomas July 25, 2018 at 8:37 p.m

    Hello,
    my name is Thomas and I'm a 56 year old firefighter and paramedic.
    My haunting in my head started about 7 years ago and I was sent from doctor to doctor without getting a proper diagnosis.
    When I was sent to a treatment 4 years ago, I did I was there with cluster patients who described their suffering and pain to me.
    It was immediately clear to me that it was a cluster.
    Through research and my training as a paramedic I learned more about this disease.
    There was something about tension headache and something about contraction of the cells.
    But tablets didn't help I realized that alcohol could be a trigger for the attacks.
    Since that day I have let all alcohol out of my body.
    But what I found out was that med.
    Oxygen can quickly relieve the pain I am in an outpatient pain clinic where I have passed on my experiences and advise my fellow sufferers to try oxygen therapy.
    I have received a standing prescription for Sauesstff from my doctor.
    A 10l bottle is next to my bed and a small bottle is my constant Accompanied
    And I tell you life becomes more bearable.
    Try it!

  6. Andreas April 7, 2018 at 9:16 p.m

    Today I was diagnosed with cluster headaches. I have never heard of this disease before and was therefore surprised at how accurate the symptoms listed here are. I don't know when my first attack started because it usually went away after 1-2 days and was too rare, but I've had it for at least 9 years. But the attacks have been coming regularly for about a week, which is why I went to the hospital. After the diagnosis I was immediately put on an oxygen mask and it helped!!!!. A huge weight has fallen off my heart. I'm 29 years old and I finally feel like I'm no longer helpless in this situation or that it's my fault. I would like to thank my friend for supporting me so much and thank you for this great post.

  7. Volker Ebert August 10, 2017 at 12:18 p.m

    Dear Peter,
    I had a chronic cluster for around 50 years. For a long time no one knew what I had, then when “clusters” became established among pain doctors, soon afterwards there was immigran.
    The pen helped me enormously. When oxygen inhalation was added, my luck was perfect. I bought an oxygen machine and with the pen I got my seizures under control. At some point my doctor said it would all be over at 60! That was my goal then. And it happened: the cluster was gone, just like that! Today I am 76 and everything is as if it never happened. LG and all the best,
    Volker

  8. Peter August 4, 2017 at 12:52 pm

    I was born in 1956 and had my first cluster seizure (which of course I didn't know at the time) in June 2013. It was violent!
    Every night between one and a half and two hours after falling asleep I was struck by this pain, the intensity of which I probably don't need to describe here. My diary tells me that I only had three attacks during the day. After a week I went to my medical advisor who was on vacation but was represented by a young female doctor. I described the symptoms and to my amazement she guessed cluster headache and immediately prescribed an urgent neurological examination in the hospital. A CT scan was carried out there and the diagnosis was ultimately made: cluster. The neurologist prescribed tablets that I took and continue to take after the attack began and which had and continue to have a good effect. From January 2014 to June 2017, the cluster attacks stopped completely, but my cluster has been “visiting” me every night since June and I continue to try to tame it; In the case of weakened attacks, I only take half a tablet so that my liver doesn't start to rebel. At first this pain put a lot of strain on me psychologically, but now I'm trying (not drinking alcohol for a long time, eating less sausage and cheese, etc.) to live with this "Mr. Cluster" and accept the situation as it is, also because I've become aware that that I won't be able to get rid of the guy that quickly anyway. Greetings to all.

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