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

Important change:

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

———————————————–

All people suffering from cluster headaches, their relatives and interested parties are cordially invited to our joint patient information day of the Kiel Pain Clinic and the Federal Association of Cluster Headache Self-Help Groups (CSG) eV.

Please plan for your participation to take place between 1 pm and 5 pm.

Program:

1:00 PM: Welcome by Prof. Dr. Hartmut Göbel (Kiel Pain Clinic) and Dr. Harald Müller (CSG eV)
1:10 PM: Presentation “What is cluster headache? What are the standard therapies?” Dr. Katja Heinze-Kuhn (Kiel Pain Clinic)
1:50 PM: Break
2:00 PM: Presentation “Cluster Headache Syndrome – Impact on Professional Life. Results of a Europe-wide Study” Dr. Harald Müller (CSG eV)
2:40 PM: Coffee Break
3:00 PM: Presentation “Cluster Headache and Comorbidities” Prof. Dr. Hartmut Göbel (Kiel Pain Clinic)
3:40 PM: Break
3:50 PM: Presentation “Relatives of CHS Patients and Psychological Support” 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@schmerzklinik.de

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

Background information on cluster headache

Our native language doesn't recognize it: cluster headache. Cluster headache is one of the most severe pain disorders known to humankind. It is characterized by sudden, unimaginably intense attacks of pain, lasting 15 to 180 minutes, that escalate on one side of the head, in the eye area, forehead, or temple. The frequency can reach up to eight attacks per day. In addition to the pain, symptoms include red eyes, watery eyes, nasal congestion, runny nose, increased sweating of the forehead and face, constricted pupils, drooping eyelids, eyelid swelling, and restlessness with an urge to move. The attacks occur in clusters over a specific period, usually an active phase of about six weeks. The English term "cluster headache" literally translates to "cluster" headache. Some sufferers experience headache-free weeks or months between these clustered attacks. Others do not experience such headache-free intervals. According to various studies, the prevalence of cluster headaches in the general population is approximately 1%. On average, according to a survey by cluster headache self-help groups (CSG) in Germany, it takes eight years for a correct diagnosis to be made. Cluster headaches are excruciatingly painful. Furthermore, they are often under-researched, undiagnosed, and untreated, making them one of the most insidious and simultaneously most useless pain disorders. Social isolation, personality changes, anxiety, depression, despondency, anger, grief, despair, and a loss of the will to live are among its many accompanying symptoms.

Cluster headaches can usually be diagnosed quickly, and highly effective treatment options exist. However, adequate diagnoses are often made very late or not at all, meaning effective therapies are either not available or only initiated after many agonizing years of suffering and serious complications. In Europe, the treatment approach is generally determined by the individual's level of experience, the organization of the healthcare system, and, unfortunately, often pure chance. Scientific research often arrives in healthcare very late. This can create insurmountable obstacles to effective treatment, obstacles that could often have been avoided with timely intervention. Others must endure discouraging battles for scientifically validated therapies and ultimately give up: Effective therapies are known and described in guidelines, but are often not approved for this nameless pain. Even in education and training, this unspoken pain is only marginally addressed—if at all. Disability law does not recognize this unspoken pain. Thus, it all too often defies hoped-for relief with insidious and insurmountable resistance. And those affected continue to suffer, alone, without hope, agonizingly from senseless attacks of pain in despair and coldly extinguished hope.

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

Cluster headache is very precisely classified and diagnosable scientifically:

Read here reports from authors who have given a name to their cluster headaches in connection with their treatment at the Kiel Pain Clinic. They have found words. They call the pain by its name:

Read here two interviews with patients and their relatives, which were conducted in connection with treatment at 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 February 26th, eighteen years ago. I woke up at 1:30 a.m. in excruciating pain. At the time, I didn't know it was my first cluster headache attack. After half an hour, it was over. But it happened again the next night, and the night after that, and this continued until April 15th. After that, there was a lull until the following February. This went on for several years.

Klaus:

At that time, we didn't even notice the pattern. You don't exactly keep a pain diary from the outset, and the idea of an annual rhythm doesn't just occur to you. We'd never even heard of cluster headaches.

Nadine:

After five years, I finally went to see a neurologist. I described my symptoms to him, he took out his thick book, leafed through it, and said, "What you're describing, you can't possibly have. Only men between 40 and 50 get it. Women don't have it, and there's no medication for it." I thought I was the only person in the world with something like that. Once I went to the hospital because I couldn't stand 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 bear it. The only help I could offer her was to talk a monologue throughout the entire pain attack, telling her what we had done the previous day and what we still planned to do—about the children, the house, work… I talked incessantly and never expected a reply, at most a gesture. That way I distracted her a little. The noise was comforting. Later, I tried to support her by accompanying her to the doctors, sharing my observations and suspicions, and asking a lot of questions. But very few doctors can accept that family members are concerned. Surely I can't be expected to stand idly by while my wife suffers!

Nadine:

I was ready to pull my teeth out with pliers just to have some counter-pain. Finally, my doctor sent me to a health resort. The application stated that I was at my wit's end, which was true, but at the resort, they tested me for alcohol and pills. At first, I didn't understand what was going on, then I told them I had cluster headaches, but they couldn't make heads or tails of it. They kept testing me and sent me for psychiatric evaluations. The resort stay was a complete waste of time. The treatment by the neurologist didn't help either. For nine years, he tried all sorts of medications, increasing the dosage from mild headache pills to strong migraine medication. He only prescribed an effective medication after it had been on the market for years! He was considered a leading expert in his field, and that's why I stayed with him. Too long, I think now. Once, I saw a pain specialist who recommended oxygen therapy. But I couldn't imagine it working, so I didn't go back. I wish I had listened to her!

Klaus:

The worst part for me was this incredible helplessness. As a man, you have this protective instinct and want to shield her from any external threat. You feel responsible – and here was a situation where I couldn't do anything. There sat my fragile wife, disintegrating in my presence, without me being able to stop it! That weighed heavily on me.

Nadine:

At first, I ran around the apartment like a madwoman during the attacks, but then I realized it's better if I stay still. Tears stream down my face, but I don't lose my temper and I keep my composure. The pain doesn't let up for a moment, and I remain fully conscious the entire time. If I'm tired from sleep deprivation at night and lie down at midday, it triggers another attack.

Klaus:

My wife's attacks are also visible externally: her right eyelid swells, 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 the inside of my nose feels sore. It's as if the skin has been peeled off that side of my face; it burns so intensely that I can't touch it. Over the years, the pain has gotten progressively worse. I always thought it couldn't possibly get any worse, but I was wrong. The attacks also lasted longer, now lasting four to five hours. During these periods, I'm extremely exhausted and fatigued during the day, especially since I still have lingering facial pain, similar to the pain of sinusitis above and below my eye. This is what's called residual pain. But I didn't know that term back then.

Klaus:

We tried to find the cause of 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 seemed like a plausible explanation. So I pulled out all the bushes in the garden in front of the bedroom. Or was the bedroom's location the problem? So we moved to a different spot within the apartment. Cool temperatures and fresh air were 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 enter the bedroom anymore and hated my bed because that's where the pain started during the night!

Klaus:

During the pain phase, the pleasant things that usually happen in bed are completely out of the question. Life changes completely. Everything that normally seems important to us becomes utterly unimportant! Bombs could be falling around the house – we wouldn't care at all! But married life isn't over forever; it's an episodic illness that eventually passes. You learn to live with it. We've been married for nineteen years now, and it hasn't shaken our marriage. My wife is there for me whenever I need her.

Nadine:

It was especially difficult when the children were still small. I had to ask the neighbor for help getting them ready for school. But over the years, things have settled into a routine. The children understand. I've explained to them what kind of illness it is, and they're incredibly supportive. However, we've only just realized how much our youngest is suffering. She's 16 now and doesn't know me any other way, but when I have a bad episode, she can't concentrate on school. That's really hit us hard! She didn't let on at home and bottled 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 spoke to her teacher, and now she only gets half the grade during her attacks. She's actually a very good student, but during these times, her grades plummet. She's afraid I might hurt myself. There have also been problems at work. When I called in sick, my boss would summon me for a meeting, and I didn't dare tell him what was wrong with me. It was incredibly stressful. Eventually, I told him; he was very kind but said the illness certainly wouldn't come back. People just don't understand this illness. Later, we learned that you can apply for disability benefits, and I received a 50 percent rating. Now things are going well at the company.

Klaus:

My employer is also aware of this, and my superiors understand that I sometimes leave my workplace at short notice and go home to my wife.

There were also periods when she had two years of remission. We thought: that will never happen again! Today we know that it's a mistake to suppress the illness after episodes of pain. You don't want to hear about it anymore, you don't want to talk about it anymore, you just want to forget. But it's precisely during the time when you feel healthy and strong that you should seek information and help.

A few years ago, I bought a computer and went online for the first time. There I found the website of the cluster headache support group. I clicked into the forum and lo and behold: there were so many people with this condition! I could ask complete strangers questions! These weren't arrogant doctors, but perfectly ordinary people! Day and night, I sat in front of the computer and printed out information, which I then lugged to my family doctor in files. She took it all in very well, read everything, and kept asking if I had any new information. The organization was still in its infancy, but there were already several local support groups across Germany. This meant that the collective experience of the members, who had already been through the whole "doctor-hopping" process, came together.

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 tourist attractions! And then we saw them – perfectly ordinary people, with cigarettes dangling from their lips, telling jokes, chatting away. That was the first time I met other cluster headache patients and their families, and it triggered an indescribable feeling of happiness, relief, anticipation, and emotion! There was this tangible certainty: I am not alone! Lectures explained what cluster headaches actually are, what chemical and physical processes occur in the brain during attacks. And I received practical tips from other sufferers. It was fantastic!

Klaus:

I've been involved in setting up a support group in our region, spending a lot of time at the computer and exchanging information with others. We have contacts with the major pain clinics and hope to learn quickly about any medical advances. It's very time-consuming, but more than 45 people now rely on me. I'm needed. It's all I can do for my wife. I admire her. I've met many people affected by this, including some incredibly strong men who collapse like little children and complain loudly. My wife keeps her composure. On the other hand, a man in pain encounters less acceptance than a woman. If he goes out and says he has a headache disorder, his boss probably thinks: "Dude, you must have had too much to drink yesterday!"

Nadine:

Today, I treat myself during attacks with oxygen inhalation and a modern migraine medication. While this doesn't prevent the pain, it does shorten the duration of individual attacks. This treatment method isn't ideal yet because I have to take a lot, possibly more than is healthy. After years of the pain periods stretching from February to April, last year they started as early as January. However, they weren't quite as severe. I've come to terms with the fact that the disease is incurable and that I have to live with it, but I have hope that research will one day bring more help.

Max P. (41), hotel manager, and his husband Louis. Diagnosis: cluster headaches for eight years

Max:

My cluster headache is unfortunately a very persistent enemy. I keep a log and do quarterly analyses; according to these, the attack frequency is currently just under one attack per day.

Louis:

With a slight tendency towards periods of rest in the summer.

Max:

This then takes its toll during the active phases, when the attacks become more frequent and intense. It started with pain in my upper and lower jaw that radiated to the entire left side of my head. I thought it might be related to my teeth, so I had four tooth roots extracted, one after the other, but the pain persisted. At first, the attacks occurred two or three times a day for exactly half an hour each time, and then not at all for several weeks or months. That's why I wasn't too worried at the time. During the pain-free periods, I gathered my strength to try out different doctors, but none of them could help me. Later, it got worse. The attacks then came primarily at night, sometimes five or six times, extremely intense. They would start in the evening, and the last attack would be in the morning between 6 and 7 a.m. The pain is stabbing and burning. It radiates from my jaw behind my eye. This remains tolerable for a short time, then it spreads through the entire half of my face, from my hairline to my neck, and I can hardly say where the center is located, perhaps somewhere in the temple-eye area.

Louis:

You can see it outwardly as early as fifteen minutes beforehand. Max's face becomes somehow asymmetrical. His left eye shrinks and changes shape slightly, it turns reddish and waters. His eyelid begins to droop, his whole face becomes rigid and expressionless, it suddenly looks crooked, and the left side of his face loses its color.

Max:

Then it starts with bouts of sweating so intense that I have to curl up somewhere and tear my clothes off. The slightest touch, even just a shirt on my chest, is unbearable. Then I pace in circles. Always in circles, in a darkened room of my apartment. I become extremely sensitive to light, and if a car headlight shines on me outside at night, it intensifies the pain. Immobility is the worst. Once I had an attack on a plane, and there was turbulence, so I couldn't even get up and disappear into the restroom for a short time to be alone with the pain. There I was, sitting in the middle of a row of three, buckled in, on the verge of going insane.

Louis:

All in all, Max tries to keep the enemy at bay as much as possible…

Max:

…by diligently following new therapies, even if I don't know if or when they will have an effect. I stick with them until I can prove, based on my records, that they are ineffective. The disease is hardly researched because there's no money to be made from it. There aren't nearly as many cluster headache 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 website of the support group and a lot of book recommendations. Only then did I realize it was cluster headaches. So precise, so to the point, it blew me away. I went to my family doctor and asked him, "Why don't the doctors know about this?" He then referred me to a pain therapist. We work hand in hand. She doesn't tell me what to do; instead, we experiment together. This has been going on for about a year and a half now. The contact with the members of the support group is also helpful and good for my mental well-being. There's no one you can truly connect with like someone who has experienced something similar. Looking into the eyes of a complete stranger and starting a sentence that they can finish – that's incredible!

Louis:

What hadn't we tried in all those years before! Right at the beginning, I even suggested to Max that we separate for six months. That was before we even knew it was called cluster headaches, but we'd already been to countless doctors. At some point, you start to doubt everything, even your relationship. I thought, "This man was healthy for thirty years, has only known me for a few, and suddenly gets sick. Maybe it's something I'm doing wrong!" Of course, I was afraid he would actually go along with my suggestion…

Max:

Without my partner, it would be difficult. It's a tremendous support system I have in the background. For example, if we're out to eat with friends and an attack starts, I only have to wink at Louis, and he immediately understands. Then I don't have to explain anything; I can slip away and take care of myself. I still feel guilty, though. It's not pleasant to burden Louis with these explanations again when there are people around who haven't experienced the situation themselves.

Louis:

Outsiders probably think I'm pretty cold. If Max gets caught on the go, I let him walk home alone, or he stands in a dark gateway, and people don't understand why I don't run after him. I don't really feel like explaining things then.

Max:

I find children fascinating. If you tell them, "I'm in pain and I want to be left alone," they understand. They completely 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 beyond the pain. We family members occasionally talk about how we cope with the illness at our cluster meetings, 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. And I don't believe there are any fundamental differences between homosexual and heterosexual couples in this regard.

Louis:

At first, you try to comfort your partner during an attack, which is impossible. Max and I now know this from others as well: physical closeness during an attack is completely undesirable. Only when the pain has subsided can I hold him in my arms again. It wasn't easy to accept that! My husband suffers, and I have to accept that I can't help. Max's withdrawal in this situation isn't a withdrawal from me. What's important is to talk about it after an attack, to find words for your own feelings.

Max:

I have to avoid situations that trigger an attack. I've heard about a lot of triggers by now, but thankfully I don't believe most of them, otherwise I'd restrict myself too much. I know that after a while, noise and light reflections can be triggers. It depends on the phase. If I haven't had an attack for two or three days, I even dare to go to restaurants that I know are quite noisy. During an attack phase, for example, I don't go to restaurants with stone floors. Going to nightclubs is out of the question, as is going to the cinema. The light shining down from the screen is too bright. When I'm in a painful phase, even a single commercial break on TV is enough to trigger a new attack. That's because of the rapid cuts and the changes between light and dark. What I can tolerate is the opera. During the phases when I'm feeling relatively well, I dare to do things that other cluster headache patients certainly wouldn't do, like going to a funfair. I want to live! Sometimes I don't care about the cluster. But there will certainly come a moment when it announces itself: Hello, I'm still here too.

Louis:

The battle with the health insurance companies is awful. How long did it take for Max to finally get oxygen – I find that unbelievable!

Max:

If I inhale oxygen right at the start of an attack, it sometimes helps a lot. Currently, I'm trying to use a medication preventively that, according to current legislation, my doctor shouldn't even be able to prescribe because it's a blood pressure medication used to treat heart rhythm disorders. However, it's been discovered that it helps with cluster headaches, but unfortunately, it's not yet approved for that purpose. The doctor was kind enough to determine that I have blood pressure problems and need this medication…

Professionally, things are difficult too, especially at the moment. I used to work in the hotel industry, but things went downhill rapidly after 9/11. Now I'm looking for something new, and the cluster is obviously very limiting.

Louis:

Nevertheless, you've had a kind of career.

Max:

A rather steep one, in fact. It was interrupted not because of the cluster, but because of the collapse of the industry.

Louis:

I'm confident you'll find something comparable. You're a strong person; perhaps you've even gained strength through your illness.

Max:

I don't know… Lately, I sometimes cry during an attack because I feel like it helps. I'm not usually the type to cry. Not because it's not expected of a man…

Louis:

…a Bavarian doesn't cry!…

Max:

…I simply didn't feel the need to cry. Strength? Is it strength to learn to live with an illness?

Louis:

I think Max's character has stayed the same. He speaks his mind, even about the illness, quite matter-of-factly, quite objectively. And he expresses precisely what he wants. That hasn't changed at all. He's much more direct than I am. And he hasn't lost any of his energy. During an attack, of course, he does, that's clear, but not otherwise. Especially the big events: weddings or vacations, those are undertaken without hesitation – I'm usually the one who says, "Come on, November is a bad time, shouldn't we just stay home?" Max simply doesn't accept that. We're flexible. If a hotel is too noisy, we find another one. That doesn't stop us from going. If he can't retreat to a quiet place, I just sit upstairs with him in the dark room. Then, of course, I suffer along with him when I see and hear how he reacts to the pain.

Max:

If I give up these activities, I've 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 precious.