Cluster headache: Public patient information day on September 21, 2019 postponed

Important change:

The planned public patient day on September 21, 2019 has to be postponed due to current circumstances. A new date will be announced.

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All cluster headache sufferers, their relatives and interested parties are cordially invited to our joint patient information day organized by the Kiel Pain Clinic and the Federal Association of Cluster Headache Self-Help Groups (CSG).

Please plan your participation between 1 p.m. and 5 p.m.

Program:

1:00 p.m.: Welcome by Prof. Dr.
Hartmut Göbel (Kiel Pain Clinic) and Dr. Harald Müller (CSG eV) 1:10 p.m.: Presentation “What is cluster headache? What standard therapies are there?” Dr.
Katja Heinze-Kuhn (Kiel Pain Clinic) 1:50 p.m.: Break
2:00 p.m.: Presentation “Cluster headache syndrome – effects on professional life. Results of a Europe-wide study” Dr.
Harald Müller (CSG eV) 2:40 p.m.: Coffee break
3:00 p.m.: Presentation “Cluster headache and accompanying diseases” Prof. Dr.
Hartmut Göbel (Kiel Pain Clinic) 3:40 p.m.: Break
3:50 p.m.: Presentation “Relatives of CKS patients and psychological care” Ms. Dipl.-Psych.
Anneke Nielson (Kiel Pain Clinic) 4:30 p.m.: Questions and answers (all speakers)
5:00 p.m. End

Location:
Pain Clinic Kiel
Heikendorfer Weg 9-27
24149 Kiel

Participation is free. Registration is not required.

Contact person:

Prof. Dr.
Hartmut Göbel Pain Clinic Kiel
Tel. 0431-200990
hg@krebsklinik.de

Jakob C. Terhaag
Telephone 0800-111444845 (toll-free)
Email jakob.c.terhaag@clusterkopf.de

Background information on cluster headaches

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.