.
Nameless pain, suicidal headache
Cluster headaches are among the most severe headache disorders and are characterized by severe, unilateral attacks of pain lasting 15 to 180 minutes, occurring in the area of the eye, forehead, or temple. The attacks occur with a frequency ranging from one attack every other day to eight attacks per day. The pain is accompanied by at least one of the following symptoms, all occurring on the same side: redness and watering of the eyes, nasal congestion, runny nose, increased sweating of the forehead and face, constricted pupil, drooping eyelid, eyelid swelling, and restlessness with an urge to move. The attacks occur in recurring clusters. These clusters are interspersed with headache-free periods of varying lengths.
Prof. Dr. Hartmut Göbel wearing his CSG honorary member's cap
On average, according to a survey by the Cluster Headache Self-Help Group (CSG eV), more than eight years for a correct diagnosis to be made. Effective diagnoses are often made very late or not at all, meaning that effective therapies are either not initiated or only started after many agonizing years of a painful odyssey, doctor-hopping, the use of unconventional methods, and serious complications. Furthermore, when undiagnosed, misdiagnosed, or untreated, cluster headache is one of the most debilitating and simultaneously most disabling pain disorders. Its many companions include social isolation, personality changes, anxiety, depression, despondency, anger, grief, despair, and a loss of the will to live. Family members usually suffer alongside the patient, feeling frightened and desperate. Yet, with specialized knowledge, cluster headache can generally be diagnosed quickly and accurately today. Highly effective treatment options exist, which, when understood and applied appropriately, usually provide effective and rapid relief.
Cluster headaches are barely mentioned in medical training and continuing education. Disability law doesn't even recognize the name of this severe pain disorder. Those affected are still considered the stepchildren of medicine. Even the German language has no word for this pain. Cluster headache is the nameless pain . The result is a kind of pain illiteracy. It is often called "suicidal headache": the extinguished will to live without hope describes the tragic individual consequence of a delayed diagnosis and ineffective treatment.
A key indicator of a high-performing and modern healthcare system is the rapid relief of suffering and pain, sparing patients a long and frustrating search for answers, diagnostic delays, and ineffective therapies. Severe and rare diseases, in particular, manifest with complex symptoms, have multifactorial origins, and present with diverse physical and psychological effects. Therefore, they generally cannot be treated comprehensively and with state-of-the-art specialized care everywhere. Without knowledge of current diagnostic criteria, the pooling of expertise through specialization, and the implementation of current, scientifically validated treatment pathways, misdiagnoses and ineffective treatment courses can easily occur.
To make current knowledge highly specialized and readily available for patient care, the concentration of experience and expertise in specialized centers of excellence is essential. These centers can also provide interdisciplinary care for rare headache disorders at the highest scientific level and develop and evaluate targeted new treatment options.
Although cluster headaches and other forms of trigeminal autonomic cephalalgias are rare headache disorders compared to more common conditions like migraine and tension headaches, a large number of people across Germany suffer from this severe pain disorder. In Germany alone, it is estimated that around 240,000 people suffer from cluster headaches for extended periods, often many decades, of their lives.
Further information on cluster headache diagnosis, causes and therapy can be found in the patient guide "Successfully against headaches and migraines", as well as in more detail in "The Headaches", both published by Springer Verlag.
I wish you every success in managing your headaches!
Sincerely,
Prof. Dr. med. Hartmut Göbel