Health. “I can no longer walk or talk”: the daily grind of migraine sufferers

No, it's not "just a headache." It's lying in the dark, losing your memory, no longer being able to interact with anyone, vomiting in pain. The consequences of migraine, which affects more than 10 million people in France, are serious. The World Health Organization (WHO) ranks it as the second most disabling neurological disease. "Migraine is a shameful disease. We don't talk about it, especially when you're a man," insists Sabine Debremaeker, president of the Voice of Migraine Sufferers. A few days before the fifth Francophone Migraine Summit, scheduled for September 20, the association, created in 2018, is publishing the results of a vast survey on the impact of migraines on a daily basis. And there are many words to describe the ordeal of those who suffer from them: "handicap," "hell," "pain," and "suffering" are those most frequently used among the 1,095 respondents, aged 30 to 59.

Mégane, 30, tried to work as a beautician for two and a half years. "It was hell," she confides. Repeated attacks, sick leave, incomprehension from management... "Some colleagues, but also doctors, called me a wimp," explains the woman who now works for herself to better manage the unpredictability of the disease. One day, it was clients who had to call the fire department.

“Migraine is a series of intracerebral events,” explains Dr. Virginie Corand, neurologist and member of the French Society for the Study of Migraines and Headaches (SFEMC). There are many triggering factors : strong light and smells, hormonal fluctuations, stress, lack of sleep, overwork, hypoglycemia, etc. “The worst are hormonal and tension migraines. When they happen, as soon as I wake up, I can’t swallow anything, not even saliva, otherwise I vomit. I can’t walk or talk, I can’t do anything,” says Mégane. Like more than half of those surveyed (52%), Mégane has already had suicidal thoughts: “I told myself it would be easier to no longer be there. To stop suffering.”

Adding to the suffering is also a feeling of guilt: 77% of respondents say they always or often feel guilty about imposing the unpredictability of migraines on their partner. "Two-thirds of people are unable to do household chores," says Sabine Debremaeker, who says she has to call on home help. "We live to the rhythm of my migraines. I feel guilty about disrupting my family's life. All the household chores fall on my partner," adds Mégane.

Migraine also seriously disrupts intellectual functions. During attacks, 94% of patients report attention problems, and 79% report memory problems. These symptoms persist outside of attacks in nearly one in two patients. Added to this are problems organizing, orienting oneself, and interacting with others. "The simple act of thinking becomes painful," explains Dr. Virginie Corand. Middle school, high school, and college students are also affected. "During a migraine attack, it takes three times longer to study," points out Dr. Olivia de Begasse de Dhaem, a neurologist in the United States. She adds: "Young patients are often not taken seriously. We need to raise awareness among school staff and students to help with diagnosis."

While crisis treatments can sometimes provide relief for some patients (46%), they are often insufficient (17%). Only 5% of respondents say they work every time. And migraine sufferers pay a high price . Two treatments are marketed but are not covered by Social Security in France. They cost €245 and €270 per month respectively. Across the border, in Belgium, the treatments have been reimbursed since 2021. "The feedback is clear: patients return to work, resume a social life, and become parents or partners again," argues Sabine Debremaeker. The work continues.

The fifth Francophone Migraine Summit will be held on Saturday, September 20, starting at 4 p.m. It will be available for free on the YouTube channel La Voix des migraineux.