“It took five and a half years for me to get a diagnosis. In the meantime, I was supposedly diagnosed with everything imaginable – and of course, I was constantly treated with a wide variety of medications and therapies. I don't even remember everything I was given,” recalls chemist Dr. Harald Müller. He is president of the German Federal Association of Cluster Headache Self-Help Groups (CSG eV). Nationwide, there are now 32 self-help groups that are networked and work closely with doctors. “This is incredibly important – also for the doctors. After all, we exchange information very intensively in the self-help group. And since this disease is so rare, it's obviously good to compare the course of the disease in all those affected and to collect data.” Professor Hartmut Göbel, head physician of the Kiel Pain Clinic, also emphasizes this point. An estimated 240,000 people are affected in Germany. Together with the CSG eV (Cluster Headache Society), Göbel founded the supraregional Cluster Headache Competence Center five years ago: "This is the only way to plan and conduct joint research projects nationwide to improve care. We also organize supraregional continuing education courses for physicians with the participation of self-help groups." Because cluster headaches are still unknown to many doctors. On average, it takes eight years for a diagnosis to be made. Eight years in which patients try unnecessary therapies, the pain doesn't improve, and the psychological burden increases. Yet the diagnosis is actually quite simple, according to Prof. Hartmut Göbel: "The doctor only needs to know that this disease exists and how it progresses. Then the diagnosis is often clear: Suddenly, very intense pain occurs behind the eye, as if the eye is being stabbed out with a red-hot knife. The eye is bright red, waters, the nose runs, and the affected person feels a strong urge to move. These are the most severe pain attacks that people have to endure. And these attacks can then occur up to eight times a day." This is where cluster headaches get their name. "Cluster" literally means "heap" or "group" and, in this context, refers to attacks occurring in clusters. These attacks happen periodically. For months, the patient has no symptoms, and then they are plagued by pain for weeks. During such a painful phase, a normal working life is unthinkable, says Dr. Harald Müller. "This illness has so many consequences – in one's social life, at work, everywhere. But the illness can be managed very well – even if it is not yet curable." Müller takes preventative medication, wears sunglasses in bright light, and knows what to take if he experiences an acute attack. And it is precisely this knowledge that he and the CSG eV (Cluster Headache Society) want to share – with sufferers, doctors, and the general public. That's why he will be attending the next symposium. Because there is still a long way to go before cluster headaches are truly understood by those who don't experience them themselves.
Experience of a cluster headache patient.
For many years, I have been plagued by recurring cluster headache attacks, sometimes severe, sometimes mild. I have already discussed and tried almost all the various medications for acute treatment with neurologists and doctors in my area. Fortunately, I found some personal accounts and was able to clarify the right medication with my treating physician by incorporating information from the internet. Unfortunately, I have never found a suitable preventative treatment, partly due to a lack of knowledge and partly due to differences of interest or opinion with the doctors, preventing successful long-term therapy. After many self-treatments that have significantly harmed my health and well-being, I have come to the conclusion that my pain can only be treated if I, with my own ambition and determination, seek treatment at a specialized clinic. After a long search and several unsuccessful attempts to secure an appointment at the few clinics specializing in cluster headaches and other headache disorders, I eventually found my way to the pain clinic in Kiel, headed by Professor Dr. Göbel, thanks to a roundabout route and the help of my health insurance provider (Techniker). Immediately after my initial contact (via email), I was invited to the clinic in Kiel, full of encouraging words and seeking help. The admission process was smooth and the staff were very kind and friendly. Even the first response gave me courage and the strength to accept the illness and be ready to fight it at the clinic. I didn't know what to expect; I had always considered a 14-day stay in a clinic inappropriate, since the pain isn't constant. There are times when I feel completely healthy, so why a 14-day stay in a clinic?
That's precisely where I've gone wrong. At the pain clinic, I realized that treating chronic or episodic pain can only be successful if the person is seen and treated holistically. From the very first day, the medication, tailored to my needs, gave me renewed energy and courage. The first week was completely pain-free—a feeling that's difficult to explain to someone who doesn't suffer from pain. So I used that first week to recover and recharge, allowing me to significantly improve my medication and overall well-being. I received the necessary information through seminars, lectures, and very insightful sessions and therapy sessions, both in groups and individually. The doctors, nurses, and support staff do their best to distract you from pain and low spirits during your stay at the clinic. You're greeted and bid farewell with a smile. The beautiful surroundings and the fresh sea breeze also contribute to this positive atmosphere. I was finally able to sleep through the night again. Your physical well-being is very well taken care of, and since the clinic specializes in pain patients, every conceivable aid and medication for acute pain is readily available. So don't worry if you have an attack; they're familiar with it here. I felt understood and cared for from day one. There are suitable treatments for everyone, from sports and physiotherapy to massages, psychological sessions, and nutrition courses. If, like me, you want to learn about your illness and understand your body, you're in excellent hands here. I've never experienced so much expertise concentrated in one place. There's always someone available to answer your questions from the various departments. Questions are answered quickly and competently. They don't just pull a medication out of a drawer and administer it. If you want, you can also access a wealth of information, some of it quite profound. In those 14 days, I learned an incredible amount about both the body and the mind. I hope I can use these experiences to get a handle on this truly debilitating illness. I'm taking home many wonderful and insightful experiences. I met some lovely people and learned valuable lessons for my future. A few truly wonderful, restful, and restorative days in Kiel gave me renewed courage and the necessary strength to continue working on myself and to accept and understand the illness with all its facets.
I would like to sincerely thank the entire team under the direction of Professor Dr. Göbel. To my knowledge, this type of treatment is unique. I recommend that every cluster headache patient visit this clinic, if only for the information it provides. And even if they don't administer sufficient medication there, at least you'll have had a good time. All the best to the future patients of the Kiel Pain Clinic.
I am happy to personally assist you with any questions or concerns.
Kind regards,
Andreas Hilgers
Dear Professor Göbel,
On behalf of the cluster headache patients, I would like to thank you once again from the bottom of my heart for the informative and extremely well-attended symposium held at your institution.
Many new aspects were certainly addressed, aspects that may not yet have been on the minds of the practitioners, but above all, well over 100 affected individuals and their relatives came together and were able to learn firsthand about their illness and the resulting problems. They also received information about relevant therapies and further options for coping with their condition.
I would also like to take this opportunity to thank your staff "behind the scenes"—especially Ms. Fromm—for their dedication and commitment. Above all, I thank them for their foresight in having a "Plan B" ready when the seminar room threatened to burst at the seams due to the large number of attendees.
All in all, I can look back on a wonderful weekend – THANK YOU!!!!