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cluster headache, a living hell for patients

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Rare diseases are very numerous, but it is a subject rarely covered by the mainstream media. Take cluster headache, which has the distinction of causing one of the worst pain that humans have ever known. Patients who suffer from it are in unimaginable distress, especially if it is the chronic form of the disease.

Seizures of varying duration

Cluster headache (AVF) is a rare disease that is little talked about and yet, it would affect nearly 80,000 people in France. This syndrome is characterized by repeated severe pain in the face, most of the time in one eye, but also in the nose and temple. These pains take the form of seizures occurring over a period of time that may vary from fifteen minutes to several hours.

These headaches are one-sided, that is, they occur always on the same side of the face respecting the median line. The pain is accompanied by one or more of the following symptoms: red and watery eye, swelling of the eyelids, nasal congestion or a runny nose. In many cases, there can also be tension in the neck and pain in the jaws and teeth.

Unbearable pain

One of the main characteristics of AVF is none other than pain intensity. Thus, the comparison with other headaches has limits. Peter Goadsby, professor of clinical neurology at King’s College London (United Kingdom), said in a 2001 study What “Cluster headache is probably the worst pain a man has ever known.” According to some accounts, the pain experienced can be a hundred times more important than migraines classic, comparable for example to an ice pick or a screwdriver that one would push repeatedly through the eye and the brain. Let us mention in passing the most recent testimony published in France, namely that of Diane Wattrelos, published by West France February 7, 2021.

In eight to nine out of ten cases, patients are agitated during seizures. Some are screaming, screaming or at best moaning. Others remain stoic or behave violently towards themselves. In some cases, the patient has thoughts of suicide and may go so far as to take action in a desperate will to break free terrible pain.

In addition, you should know that the AVF has two forms: episodic or chronic. The episodic form occurs “in groups” for a period ranging from 7 to 365 days with a remission of at least one month between each period. In the event that it lasts longer than a year without any period of lull of at least one month, it becomes a question of a chronic form, which corresponds to about 20% of cases.

Diagnosis and causes

Cluster headache is a difficult disease to diagnose, mainly because it is not well understood. In addition, the timeframe for this diagnosis is long: an average of 44 months. No less than 31% of patients are diagnosed four years after the onset of the disease. The French Society for Migraine and Headache Studies (SFEMC) further explains that the cause of AVF remains unknown to this day. However, we know that alcohol consumption or irregular sleep can promote seizures.

Several studies have focused on the hypothalamus, which plays an important role in wake-sleep cycles and the secretion of certain hormones. During a seizure, an area linked to the hypothalamus functions abnormally. It then activates the structures responsible for facial pain and, by reflex, the vegetative nervous system. The latter causes tearing, nasal congestion and the other symptoms mentioned above.

Credit: Henry Vandyke Carter / Wikipedia

A new treatment unavailable in France

Several treatments are available to relieve seizures, such as injectable Sumatriptan. This is the most effective treatment known with the disappearance of the seizure. in less than fifteen minutes in 74% of cases. However, this would not be effective in all patients.

A petition is currently circulating in France concerning Aimovig, a very promising new treatment. Authorized in the United States and Canada, the Aimovig has recently undergone a European marketing authorization. However, it is very expensive and is still not available in France. It is therefore not reimbursed by Social Security. Already signed by more than 67,000 people, the petition will be sent directly to the Minister of Health Olivier Véran as soon as the 75,000 signatures are reached.


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