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 Literary Form
Hi Matthias,
your thoughts on our illness are very expressive – very pain-filled. Did you write them down during a sensitive phase?
I've been suffering from cluster headaches for 10 years (I'm 35 now), and I was incredibly lucky to get the right diagnosis right away – an absolute stroke of luck! Since then, I've had recurring periods of years without symptoms, but now I've been home for two months – I had a pain attack almost every day for six weeks, and now I've also developed occipital neuralgia, which can't really be treated with medication!
Cluster headaches are simply hell! I use Imigran Injekt during pain attacks! Every now and then, I let the pain attacks wash over me – when I'm angry at the cluster headaches and want to be stronger than them!!!
Then I break out of this hell of pain and feel superior – that gives me hope and the strength to believe that better times are coming soon!
Then I have my laughter again, my sparkling eyes, my mischievous glint in my eye, and the cluster headache is far, far away…
I'm currently considering a stay in a pain clinic. I need new ways of thinking to better cope with the constant pain.
I wish all cluster headache patients that they don't forget the beautiful things in life despite the pain!
Warm regards,
Giuseppina
Dear Matthias Kempendorf,
your words touched me deeply, and above all, they perfectly reflect my own experiences. I've suffered from cluster headaches since 1978 (when I was 20) – although I only received a diagnosis in 2004! Before that, I was more or less labeled a malingerer – even by the countless doctors I consulted – as someone who was perfectly fine since nothing was visible, and the "imagined" pain could only be attributed to psychological problems. It wasn't until five years ago, when I was plagued by seemingly endless attacks every day, that I finally found a doctor who recognized my cluster headaches and who helped me tremendously. I'm fortunate enough to sometimes be pain-free for up to two years. Then I forget all the suffering. But the cluster headaches don't let up, and suddenly they strike again: unannounced, unpredictable, relentless, and persistent for several weeks. But I still believe that one day it will all stop.
Warmest regards,
Evelyne Zingg
I had my first episode in 1999, and since mid-2000 I've had chronic cluster headaches; I was diagnosed in 2005. Matthias Kempendorf's texts are absolutely spot-on. Thank you!
Warm regards,
Friedrich
Dear Matthias Kempendorf,
Your words deeply touched and affected me. As someone who "only" suffers from migraines, one can hardly imagine the intensity of this excruciating pain. With your moving words, you have achieved what a purely medical description of the symptoms never can: this pain signifies isolation, helplessness, despair, and often also self-abandonment.
I sincerely hope that you were able to receive the help at the pain clinic that will allow you to lead a predictable life with future prospects again.
With heartfelt sympathy,
Bettina Frank