One woman鈥檚 war against the pain of 鈥榮uicide headaches鈥
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When the headaches come for Diane Wattrelos, as they do for half an hour 10 times every day, she says it feels like someone has 鈥渟tuck a screwdriver in my eye and turned it.鈥
These are no ordinary headaches 鈥 they are cluster headaches, which cause such extreme pain, normally behind one eye, that doctors compare it to having a limb amputated without anaesthetic.
Also called 鈥渟uicide headaches鈥 because the pain provokes suicidal thoughts, this severe neurological condition is suffered by around 1 in 1,000 people worldwide, according to the Migraine Trust.
For some it strikes only occasionally, but Wattrelos has spent nearly a decade crippled by near constant attacks.
In the garden of her home in the French district of Eure, west of Paris, she said she was still recovering from yet another night punctuated by pain.
Her hair was short after being partly shaved during a recent stay in hospital.
At the age of 31, she has had 12 surgical operations and tried all kinds of treatments in a desperate bid to alleviate the agony.
It all started when she was 14.
Until then a 鈥渧ery happy鈥 teenager, she remembers feeling 鈥渆lectric shocks in her neck鈥 for the first time.
She played down these warning signs, hoping to spare her parents after her little brother had already struggled against a different disease.
It would be a long time until she was correctly diagnosed 鈥 a common fate for people suffering cluster headaches.
Trying to escape 鈥榟ell鈥
Despite the pain, she continued to live her life, traveling, partying and studying, eventually meeting the man who would become her husband at the age of 19.
Then one day in 2013, a cluster headache 鈥渇loored鈥 her.
鈥淭hat day I saw the distress in my husband鈥檚 eyes, I could not continue to hide the disease,鈥 she said.
She could no longer go a single day 鈥 or night 鈥 without an attack.
She lost 15 kilograms and became isolated due to the suffering.
Then one morning her legs gave out from under her, and she was taken to a hospital emergency room and given an array of tests.
Eventually she received her diagnosis 鈥 cluster headaches, for which there is no known cause or cure.
鈥淎t that moment, I felt legitimate in my pain, I told myself that I was finally going to be treated,鈥 she said.
But after trying around 20 of the available treatments, she found none worked on her.
Desperate to 鈥渢ry everything to get out of this hell,鈥 she turned to surgery.
But she just emerged 鈥渕utilated鈥 after 12 different operations, she said.
Throughout she had feared the operations could leave her sterile 鈥 her overriding desire to have children kept her going.
鈥淢y husband told me that the disease has taken a lot from us, but it won鈥檛 take that,鈥 she said.
Using fertility treatment, the couple had a baby boy.
But even with that joy came another blow.
She was diagnosed with endometriosis, another hugely painful chronic condition that is also uncurable and difficult to treat.
鈥淚t was very hard, I didn鈥檛 feel strong enough to deal with another disease as well,鈥 she said.
They later had a baby girl in what she called a 鈥渕iracle.鈥
She then found a new salve by sharing her story on Instagram.
鈥淚 saw that I was helping a lot of people by talking about my illness, and that was my best therapy,鈥 she said.
Now she has published a book, called 鈥淢es maux en couleurs鈥 (My pain in colors).
鈥淚 have turned my disability into a strength,鈥 she said.
When cluster headaches strike, Wattrelos inhales oxygen, a common treatment to soften and shorten the attack.
She also takes what she calls the 鈥渕iracle injection鈥 of the drug sumatriptan.
鈥淚鈥檓 only allowed two injections a day, so I have to choose which attacks鈥 to use it for, she said.
But most days she has more than two injections, despite the risks.
Her war against the pain has also led to an opioid addiction.
She said she had been using the opioid tramadol for 10 years, but only realized she was addicted when watching a TV program on the subject last year.
Her family is what keeps her going, she said.
鈥淪ome weekends I cannot stand up, but there are also beautiful moments 鈥 and they make life worth living.鈥
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