"For me it took five and a half years for the diagnosis to be made. I supposedly had everything in between - and of course was always treated with a wide variety of medication and therapies. I don't even know what I got there," recalls the chemist Dr. Harald Müller. He is President of the Federal Association of Cluster Hedge Self-Aid Groups, CSG EV Nationwide there are now 32 self-help groups that are networked with each other and work closely with doctors. "This is really incredibly important - also for the doctors. After all, we exchange ideas very intensively in the self -help group. And since this disease is so rare, it is of course good to compare the course for all those affected and collect data." This is also emphasized by Prof. Hartmut Göbel, chief physician of the Pain Clinic Kiel. An estimated 240,000 people are affected in Germany. Together with the CSG EV, Göbel founded the national cluster headache competence-centrum five years ago: "This is the only way to plan and carry out nationwide research projects to improve care. Because the cluster headache is still unknown to many doctors. On average, it takes eight years before the diagnosis is made. Eight years in which patients try unnecessary therapies, the pain does not get better and the psychological stress increases. The diagnosis is actually very simple, says Prof. Hartmut Göbel: "The doctor only has to know that this disease exists and how it works. Then the diagnosis is often clear: behind the eye very severe pain suddenly occurs, as if the eye is stabbed out with a glowing knife. The eye is high, tears, the nose runs and the affected person feels the hardest. Pain attacks that people have to suffer. Therefore, the cluster headache also has its name. Cluster literally means "pile" and means in this context: time. Because these attacks occur periodically. The patient has no symptoms for months and then the pain plagued him for weeks. In such a phase of pain, a normal working life cannot be considered, said Dr. Harald Müller. "This disease entails so much - even in the social environment, in working life, everywhere. But you can get the disease under control very well - even if it is not yet curable." So Müller takes medication, wears sunglasses when it is light and knows what he has to take when he gets an acute attack. And it is precisely this knowledge that he and the CSG EV want to pass on - to those affected, doctors and the public. That is why he will be there again at the next symposium. Because it is still a long way until the cluster headache has also reached the minds of the people who do not experience it themselves.
Experience of a cluster headache patient.
I have been plagued by cluster headache attacks for many years.
Sometimes harder, sometimes easier. I have already been able to discuss and try out almost all of the various medications for battery treatment with the neurologists and doctors in my region. Luckily, I found some reports and was able to clarify the right medication with my doctor by using information from the Internet. Unfortunately, I have never found a sensible prophylaxis because, partly due to ignorance and partly due to differences of interest or opinions with the doctors, successful long-term therapy was not achieved. After many self-experiments, which have caused considerable damage to 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, go into the arms of a specialist clinic. After a long search and unsuccessful requests for appointments on my part in the few clinics that specialize in the treatment of cluster and headache disorders, I went via a detour and with the help of my health insurance company (technician) to the pain clinic in Kiel under the direction of Prof. Dr. Göbel became aware. Immediately after the first contact (via email), I was invited to the pain clinic in Kiel full of encouraging words and looking for help. The reception went smoothly and was very nice and friendly. The first answer gave me courage and gave me the strength to accept the illness so that I could be ready to fight it in the clinic. I didn't know what to expect; I always felt that such a stay in a clinic for 14 days was inappropriate because the pain wasn't always present. There are times when I felt completely healthy, so why a 14 day stay in a clinic? That's exactly where my mistake was so far.
In the pain clinic, I realized that treatment of chronic or episodic pain can only be successful if the person is perceived and treated as a whole. On the first day, the medication tailored to my needs helped me gain new energy and courage. The first week was completely painless. A feeling that is difficult to explain to a non-pain sufferer. So I used the first week to recover and gain energy in order to significantly improve the medication and my well-being. I was given the information I needed in the form of seminars, lectures and very insightful sessions and therapy sessions in groups or individual appointments. The doctors, nurses and assistants do their best to distract you from the pain and bad mood during your stay in the clinic. You are greeted with a smile and also said goodbye. The beautiful surroundings and the fresh wind from the sea play their part. I was finally able to sleep through the night again. Your physical well-being is well taken care of and since the clinic specializes in pain patients, every conceivable form of aid and medication is available and quickly available for acute pain. So don't worry if you have an attack, you know what it's like here. I felt understood and cared for from day one. There are treatments for everyone, from sports to physiotherapy and massages, to psychological sessions and nutrition courses. If you're like me and want to learn something about your illness and understand your body, you're in the right place here. I have never experienced so much expertise bundled in one place. There is always a contact person from the different areas available. If you have any questions, you will be helped quickly and competently. You don't just pull a medication out of the drawer and administer it. If you want, you can also find out a lot of information, some of it very in-depth. In the 14 days I learned an incredible amount about the body and the mind. I hope that I can use my experiences to get this really debilitating disease under control. I take many beautiful and insightful experiences home with me. I met nice people and was able to learn something for the rest of my life. A few really nice, relaxing and energizing days in Kiel gave me new courage and the necessary strength to continue working on myself and to accept and understand the illness with all its characteristics. I would like to warmly thank the entire team led by Prof. Dr. Thank Göbel. As far as I know, this type of treatment is unique. I recommend every cluster headache patient to visit this clinic. Just for the information. And if there isn't enough medication, at least you had a good time. All the best to the upcoming patients at the Kiel Pain Clinic.
If you have any questions, I would be happy to provide you with personal advice and assistance.
Kind regards
Andreas Hilgers
Dear Professor Göbel,
On behalf of 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 in your house.
Many new aspects were certainly addressed that perhaps the practitioners were not yet aware of, but above all, well over 100 affected people and their relatives came together and were able to find out first-hand about their illness and the resulting problems. However, they also received information about relevant therapies and further options for dealing with their suffering.
I would also like to thank your employees “in the background” – especially Ms. Fromm – for their commitment and dedication. Above all, for the foresight to have a “Plan B” in place when the seminar room threatened to burst at the seams due to the large number of visitors.
All in all, I can look back on a wonderful weekend – THANK YOU!!!!