“The first time I had a migraine I was walking to the bus stop, says Molly, a 27-year-old lawyer who suffers from migraines with aura. Suddenly I couldn’t see properly. I went home and lay down until the next day. […] I thought I was dying. I never imagined that was what it was, having a migraine.”
In 2019, migraine was classified by the World Health Organization like the second sickness the most disabling and the first for women. According to Inserm figures, it would affect up to 15% of the general population, to varying degrees. However, despite some progress in terms of research medically, the causes of this disease are not yet fully known.
A well-defined disease
“Migraine is not a small headache”begins the neurologist Carole Séréni, author of migraine words, published by Éditions du Cerf at the end of 2021. It’s a disease neurological, “sometimes hereditary”. On the clinical level, it must moreover meet a certain number of precise criteria emanating from the International Classification of Migraines and Headaches to be considered as such.
“You must have had a certain number of attacks: five for ordinary attacks and two for migraine with aura. A crisis usually lasts between four hours and seventy-two hours., explains Dr. Séréni. Regarding the painshe must be “on one side of the head, to be a so-called throbbing pain, which is increased by physical activities”. Added to this, most often, is a sensitivity to light (called photophobia) and noise intolerance (or phonophobia). Some migraine sufferers may also experience nausea and vomiting.
If it is estimated that 80% of sick people have “normal” migraine attacks, 20% have migraines with aura, to which are added visual disturbances, sensory disturbances, and sometimes, difficulty in speaking. However, you do not need to meet all of these criteria to be considered a migraine sufferer: “There must be at least two characteristics of the pain, and at least one accompanying sign”says the specialist.
An evil still misunderstood
Regarding pain, although it is not always present during a migraine attack, “we know that it is due to two things”, says the neurologist. On the one hand, “neurogenic inflammation, that is to say a secretion of irritating products which inflame the extremities of the neurons». The other, “the modification of the diameters of the small arteries”.
But what are the causes of these crises? This is where it gets tricky. “We don’t fully know where they come from, but we do know that it’s a phenomenon triggered by the brain, exhibits Carole Séréni. It’s like a kind of program that is triggered. The brain reacts to something that it finds “too much” for it.” Despite advances in research, “there are many things we still don’t know, continues the neurologist. What are migraines good for? We have no idea either.”
Also, many migraine sufferers identify triggers when they come into contact with sensory stimuli, such as light or certain scents. Many women also report suffering from migraines during their period. Some patients also talk about moments of stress, or a lack of sleep. The list is as long as there are migraine sufferers. “For my part, I completely stopped drinking coffee, Molly says. I don’t even drink anymore tea green since it contains a small amount of caffeine.
Added to this vagueness is medical wandering for some patients. “There are people who are sick for forty years and who never knew they were sick, says Sabine Debremaeker, president of The Voice of Migraineurs association. For some, the neurologist never told them: “You are really sick, it’s a neurological disease”.
This is sort of the case with Molly. After suffering from a first migraine with aura, she went to a doctor immediately. “The next day, I went to see the doctor at my university to talk to him about it. He thought I had been drinking, she having fun today. I gave up and hoped it wouldn’t happen again. […] It was only two years after I had the diagnosis.
A recognition problem
Although migraine is a common problem, “she is far from being considered”, argues Carole Séréni. And to add: “This disease is particularly a burden for people who are precarious or who are in difficult situations.” That’s also why the neurologist talks about “great contemporary scourge” in his work. “We observe an impact of contemporary difficulties on migraine sufferers”, linked for example to pollution, noise or promiscuity, she says.
But that’s not all. The researchers identified that the overrepresentation of women among patients could be explained by certain hormonal fluctuations linked to menstrual cycle. Also, the discrediting of migraine sufferers can be linked to a certain form of misogyny. As Dr. Séréni relates, migraine has long been considered a “a good woman’s disease, which made you laugh”.
This Sexism obviously serves the cause of female migraine sufferers, but it also serves their male counterparts. They consult “unquestionably less than women” because they find themselves having to face social stigmas, namely that a man must be virile and not show his pain.
The issue of treatments
Despite this lack of recognition, crisis and background treatments exist to try to manage migraine attacks, like the famous triptans. However, for some migraine sufferers considered “severe”, conventional treatments simply do not work.
In an interview with Lise Garnier for Slate.fr in 2021Professor Anne Ducros estimated that “If some of the patients tolerate the drugs made available to them well, it is estimated, in France, between 18,000 and 38,000 severe and refractory migraine sufferers”. For the latter who sometimes suffer from chronic migraine, life can quickly turn into a real ordeal.
“Chronic migraine is a terrible handicap. Pain invades people’s lives because it’s impossible to think about anything else.” emphasizes Carole Séréni. There are thus repercussions on professional life, but also deterioration in family life or personal life in general. A survey conducted by La Voix des Migraineux in March 2020 showed that 15% of migraine sufferers regularly contemplate suicide.
If innovative treatments exist throughout the world, France seems to be far behind on this subject. “All of Europe is delighted with anti-CGRP monoclonal antibodies, but we are not offering them for reimbursement”, laments the neurologist. However, clinical trials have shown a marked improvement in some people with severe migraines. Almost a year ago, a petition for reimbursement of these antibodies had emerged on the internet.
Also, even if it happens that some people end up having no more seizures at some point in their life, “we still don’t know how to cure migraine definitively”, says Carole Séréni. Fortunately, associations such as La Voix des Migraineux exist to “to break the isolation and to inform”.
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Migraine, this “good woman’s disease” that can make your life hell
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