Its pains make life so impossible that it has been dubbed “suicide disease”. But there are solutions.
«Clike a stab in the eye.” “I would like to be knocked out to make it stop.” Reading the testimonials of patients with cluster headache (AVF), we understand why some have ended up committing irreparable harm. “Effectively, explains Dr. Caroline Roos, neurologist in the headache emergency department at Lariboisière Hospital in Paris, the intensity of the symptoms is such that this pathology can be very worrying for people who live with it. It is therefore important that it be diagnosed as soon as possible. Unfortunately, it takes an average of six to seven years before a correct diagnosis is made. The cause? A lack of training for general practitioners, and a lack of expert headache neurologists. Too often, FVA is mislabeled as a migraine and treated inappropriately. However, there is a very clear international classification which should avoid diagnostic errors.”
Indeed, attacks of AVF last between fifteen minutes and three hours, while migraines settle for four to seventy-two hours. In addition, AVF gives exclusively unilateral pain of incomparable intensity, localized around the eye-temple area and generally accompanied by other signs, such as red and watery eye, drooping eyelid and above all great commotion.
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If you think you are a victim, do not hesitate to consult a center specializing in the management of migraines and headaches. To treat attacks, self-injection of sumatriptan, twice a day at most, is certainly the most effective solution with disappearance of symptoms in less than fifteen minutes in 74% of cases. In addition or as an alternative, the inhalation of oxygen at 7 litres/minute also gives good results, with no side effects, apart from a rebound observed in some patients. As a background treatment, to reduce the frequency of seizures, verapamil is the reference treatment. Administered in high doses, it requires very strict cardiac monitoring. Lithium carbonate, as well as corticosteroid infiltration at the emergence of the occipital nerve can also be beneficial. Finally, for patients who remain refractory to all these drugs, stimulation of the occipital nerve by implanting electrodes can be proposed.
Today, some patients prefer to rely on a less invasive treatment that is not approved in France or Europe: Emgality. Validated in the United States and Canada, this monoclonal antibody administered at 300 mg by subcutaneous injection is now indicated there to reduce the frequency of seizures in adults with episodic AVF refractory to conventional treatments. In France, it is possible to buy it in pharmacies since it can be prescribed to prevent severe migraines, but it is not reimbursed by health insurance. Those who obtain it to treat AVF must therefore pay around 500 euros for a double injection of 120 mg every 28 days. Very few patients can afford it.