Cluster headache is one of the most severe pain disorders known to humankind. It is characterized by sudden, incredibly intense attacks of pain lasting 15-180 minutes, typically affecting one side of the head, the eye area, forehead, or temple. Up to eight attacks can occur per day.
The native language does not recognize it: cluster headache
In addition to pain, symptoms include redness of the eyes, watery 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 an urge to move.
The attacks occur in clusters over a specific period, usually an active period of about six weeks. The English term is cluster headache, literally translated as "cluster" headache.
Some sufferers experience headache-free weeks or months between these clustered headache 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, being under-researched, undiagnosed, and untreated, they are one of the most malignant and simultaneously most useless pain disorders in humankind.
Social isolation, personality changes, anxiety, depression, discouragement, anger, grief, despair, and loss of the will to live are its many companions.
Cluster headaches can usually be diagnosed quickly, and highly effective treatment options exist. However, accurate 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. 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 treatments 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, in the face of senseless pain attacks, driven by despair and coldly extinguished hope.
The German language has no name for this pain. It is nameless pain, pain illiteracy.
Matthias Kempendorf has experienced it firsthand. He has found new, poignant, and moving words for and against the nameless pain. His texts show: Where there are words, questions, answers, paths, and hope arise.
Read here:
experiment on cluster headache - Matthias Kempendorf
Matthias Kempendorf has created a “monument” in the truest sense of the word for this pain disease.
More links
Patrick Süskind: Amnesia in litteris
Hello Matthias,
your thoughts about our illness are very expressive - very painful, did you write them down during a sensitive phase?
I've been suffering from clusters for 10 years (I'm 35 today) and was very lucky to get the correct diagnosis right away - an absolute stroke of luck!
Since then, I've had phases without symptoms for years, but now I've been at home for two months - I had a pain attack almost every day for 6 weeks, and now I've also had occipital neuralgia, which can't really be treated with medication! Cluster is just hell!
For pain attacks I use Imigran Injekt! Every now and then I let the pain attacks overtake me - when I'm angry at the cluster and want to be stronger than it!!! Then I break out of this hell of pain and feel superior - that gives me hope again and the strength to believe that other times will soon come!
Then I have my smile again, my shining eyes, the mischief on the back of my neck and the cluster is far, far away...
At the moment I'm thinking about a stay in a pain clinic.
I need new ways of thinking to better deal with the constant pain. I wish all cluster patients that, despite the pain, they do not forget the beautiful sides of life!
Kind regards,
Giuseppina
Dear Matthias Kempendorf,
I was also very touched by your words and, above all, they reflect exactly my experiences.
I've been suffering from clusters since 1978 (when I was 20) - but I've only been diagnosed since 2004! Previously, I was more or less described - even by the countless doctors I visited - as a malingerer who doesn't have anything wrong, since you can't see anything, and the "imagination" of the pain could at best be attributed to psychological problems. It was only five years ago, when I was plagued by never-ending attacks every day, that I finally found a doctor who recognized that I was suffering from clusters and who helped me a lot. I am lucky that I am sometimes pain-free for up to 2 years. Then I forget all the pain. But the cluster doesn't let up and suddenly it attacks me again: unannounced, unpredictable, relentless and persistent over several weeks. But I still believe that at some point it will stop completely. Kind regards,
Evelyne Zingg
In 1999 I had my first episode, chronic cluster headache since mid-2000, the diagnosis was in 2005. Matthias Kempendorf's texts are formulated absolutely to the point. Thanks!
Kind regards,
Friedrich
Dear Matthias Kempendorf,
Your words touched and affected me very much. As a “just” migraine patient, you probably have no idea of the intensity of this devastating pain. With your moving words you have achieved what a purely medically oriented description of the symptoms never can: this pain means isolation, helplessness, despair and often self-sacrifice.
I hope so much that you were able to get the help at the pain clinic that would enable you to lead a predictable life with future prospects again.
Compassionate greetings
Bettina Frank