Short hair, shaved above the neck due to a recent hospitalization, she is recovering, at the end of the morning, from yet another night punctuated by seizures.

"When that happens, I have the impression that a screwdriver has been stuck in my eye and that it is turned on itself", says the young woman, slender, in the garden of her house in the Eure.

Nicknamed "the disease of suicide" as those affected sometimes want to "finish it" to stop this "extreme" pain, vascular headache affects around 120,000 French people, more or less severely.

Doctors compare the pain to an amputation without anesthesia.

For Diane Wattrelos, the disease is chronic: she suffers about ten attacks, lasting about thirty minutes, each day.

It all started when I was 14.

As a "very happy" teenager, she remembers feeling the very first time like "electric shocks in the neck".

To spare her parents, who have already experienced another disease with her little brother, she prefers to minimize these warning signs.

Thus begins a long diagnostic wandering.

Drug-resistant

At 19, she met her future husband.

Despite the recurring pain, she continues to live, party, start a BTS, travel.

Until one day in 2013, when a crisis “defeated” her.

"That day, I read the distress in my husband's eyes, I could not continue to hide the disease".

Not a day, not a night without a crisis breaking out.

The suffering isolates her, she loses about fifteen kilos.

Diane Wattrelos in her house in Eure on April 19, 2022 Sameer Al-DOUMY AFP

One morning, her legs give way under her.

She is taken care of in the headache emergency room of a Parisian hospital where she does a battery of examinations.

At the end of the day, she is told that she is suffering from cluster headache, a neurological condition whose cause remains poorly identified.

"At that moment, I feel legitimate in my pain, I tell myself that we will finally treat me," recalls the 30-year-old.

She tries about twenty treatments, without result.

It is declared drug-resistant.

Because she wants "to try everything to get out of this hell", she agrees to have the operation.

She comes out "mutilated" by twelve operations in total, which could have made her sterile.

But the desire for children was stronger than anything: "my husband told me: + the disease took us a lot, it will not take that from us +", she smiles today.

"My best therapy"

After a PMA, they welcome a little boy.

She discovers that she has endometriosis.

"It was very hard, I didn't feel strong enough to handle another illness on top of that," she says.

Some time later, she gave birth to a "miracle" baby girl.

To share her story, she created an Instagram account.

Diane Wattrelos, at home, in Eure, April 19, 2022 Sameer Al-DOUMY AFP

"I saw that I was helping a lot of people by talking about my illness, and that was my best therapy," she says.

In the process, she has just released a book, "My evils in colors" (published by Leduc).

"I made my disability a strength," she says.

But "I went through much darker phases, through depression".

To support her attacks, she administers oxygen and injects herself with a "magic injection", a vasoconstrictor.

"I am only entitled to two injections a day, so I have to + choose + the crises".

A dosage that she exceeds, despite the risks.

Recently, she has been battling an "addiction to legal drugs".

"I have been on tramadol (an analgesic from the opiate family, editor's note) for ten years, I became aware of my addiction in November while watching a program on the subject", she says.

To hold on, she clings to "her family" of which she is so proud.

"Some weekends, I can't put my foot down, but there are also beautiful moments, and they are worth living".

© 2022 AFP