This pain, which has poisoned Aurélie’s life for 25 years, comes from a cruelly invisible illness, sometimes mocked (especially among women) out of ignorance but most of the time unbearable: migraine. “For me, it started as an adult, but I was already familiar with migraines when I was younger because my father suffered attacks quite frequently. He would sometimes stay two or three days in a row in the dark… And so, when I had my first migraines, which looked more like tension headaches, around the age of 21, I quickly understood“.
She still remembers this first painful episode very well: “The pain was more “in helmet”; it started at the back of the neck then went up to the forehead with very, very strong tension at the temples. And always this problem of extreme fatigue where we have the impression of having had three sleepless nights“.
The escalation of medications
To make the pain go away, Aurélie takes paracetamol tablets. The analgesics proving ineffective, she switched to triptan injections administered at the time for prevention, from the migraine aura, these first signs preceding the attack. “Unfortunately, other than nausea, dizziness, and putting me in a daze, they had no effect.she remembers. I had rather low blood pressure, which was really very unpleasant.“.
In the meantime, the migraines will increase: “Seizures could occur at any timecontinues Aurélie, now 47 years old and mother of two teenagers. However, I did a lot of sport, 9 to 10 hours a week, I had a relatively good lifestyle, I never drank much. On the other hand, yes, I smoked except during attacks when the smell was, like the light or the noise, unbearable for me.“.
“When the doctor announced it, when I was 15, I remained petrified. It was anti-sexy and it was the shame of my life”
On the medication side, things are escalating. “I started taking Dafalgan, which worked wonderfully while making me completely dependent. I took 2, it worked. Then I had to go to 4, then 8, then 10 per day to finally get to the stage where I was taking it every day. I suffered from migraines about every 2 days and it could last up to 3 or 4 days. I started having palpitations, I felt worse and worse, I had a headache all the time“.
It was then that the young woman decided to see a neurologist for the first time. “My GP told me that I was taking risks for my health by taking so many medications. I never imagined I could be this addicted. In fact, the painkiller induces the migraine, it keeps it going and it’s a vicious circle. So I had to wean myself. During these 2 months of withdrawal, I lived with migraine 24 hours a day. I barely slept, I ate very little. It was non-stop until we got to this lull. It was just before the Christmas holidays; I felt – finally – alive again. I had more or less good holidays and then it started again. Again the hormonal migraines, again the incessant pain… And then I started taking triptans (a class of drugs to treat acute attacks of migraine, Editor’s note).”
I had considered euthanasia…
This is also the moment when the migraine sufferer is told that the cause of the problem may be to be found in her lifestyle. “People are starting to make you feel guilty about your diet, explains Aurélie. I was also told that I perhaps had thyroid problems, too much stress, that I should work less, or even stop for six months while I am independent, that I should go on vacation, that I distance myself from my life… In short, if I had migraines, it was my fault and it was ‘in the head’, in the sense of ‘psychological’. Which didn’t help me. Result: I did psychotherapy to see if I actually didn’t have psychological problems that caused migraines, things that I had repressed deep within myself since early childhood…“
Deploring the “medical desert around migraine“, Aurélie remembers her years of medical wandering, multiplying consultations without a clear answer. “Very often, migraine patients undergo unsuitable treatments, even dangerous in the long term, such as overconsumption of painkillers, which fuel the vicious circle of pain.confides Aurélie. We end up believing that the problem comes from us, our lifestyle or our choices, while there is still a lack of real medical support and recognition of the suffering inflicted by migraine.“.
“My disability is filth. It looks like a punishment from the gods of Greek mythology”
After hypnosis, acupuncture, homeopathy or even a detour to Germany where he was administered a massive injection of medication every three months for a year and a half – “1,000 euros per session, a total scam, but so be it” -, the Brussels resident, who is now on her fifth neurologist, has been receiving a monoclonal antibody for prophylaxis since 2019.
“Unfortunately, Inami in Belgium currently only supports nine injections of the monoclonal antibody per year.regrets Aurélie, while many patients, like me, would need 12 annual injections for optimal relief“. Result: either the patient suffers his migraine during these three months, with the impact that we imagine on the quality of life, whether at the professional, social and personal level, or he pays for the three injections. not refunded. Cost: 1,500 euros.We really need to make public authorities aware of this inadequacy.”insists Aurélie. Before adding: “Ce treatment was my salvation. I admit that before obtaining this medication, I very seriously considered euthanasia. At that moment, I was completely misunderstood, even by those close to me who saw me in good health and therefore had difficulty believing that I wanted to end it.”
A feeling of shame and guilt
Invisibility is the difficulty of this illness. “No one, except the people who experience it, can understand how trying it is to be constantly tired and in pain. Because it is not seen, people do not understand and they judge very easily. This is especially true since I am a woman working in an environment of men who do not take migraines seriously. Just the word makes them laugh. So, we prefer not to talk about it, to hide. They don’t imagine that having an ophthalmic migraine is like having your eye taken out. I once hit my head against a wall because I was in so much pain. Or hurt my hand so that my mind focuses on that pain and not the pain in my head. In those moments, only negative thoughts come to mind.”
Then, in addition to this feeling of shame, there is also the full weight of guilt. You have to stand up for your work, for your family, for your friends…”If you knew how many times my kids or husband found me passed out in my room, or throwing up in the bathroom…“
“I lost my face. I no longer have eyes, no more gaze”
If today, thanks to monoclonal antibody treatment, this mother’s condition is stabilized, she believes that yes, the migraine has “life is clearly rotten“. Because “it deprives you of a social connection. We cannot function normally, plan a dinner with friends, go on vacation… I love gardening, art, cinema, music and especially traveling. I really like discovering different cultures, learning the habits and customs of countries, it’s something that attracts me enormously. All things that we are often deprived of when we have migraine and that undermined me. On weekends, a lot of times you feel so bad that you lie down, or if not, because you’re in pain, you’re so exhausted, that you just don’t want to do anything.. And so, you come across as someone who is capricious, unreliable, not fun… It’s a double whammy, while I like to laugh, I isolate myself. We get used to incomprehension. Isolation is very painful. The hardest thing for me is probably this feeling of loneliness. In my opinion, Migraine is a daily battle against pain, but also against the external environment. So, we either give up, or we do violence to ourselves, we try to ignore it, to continue, to have a life as normal as possible.“.
Lisa, 15 years old: “Normally, today, I should no longer be able to walk…”
Through “Words for Evil”, La Libre has chosen to give voice to people affected by various illnesses, both physical and mental, common or rare. Meetings which aim to understand their daily lives, their difficulties and hopes, to share their outlook on existence. It is also a way of reminding us that no one is safe from these accidents of life. This series can be found every other Monday on our site.
