Sylvia, 47 years old

Two years ago, for the past four weeks I've been suffering from intense headaches. The pains were getting worse, sometimes paresthesias and clumsiness appeared, but we put it down to fatigue and laughed about it in the family...
At the time, I was a student nurse doing my internship in infectiology. We had the first COVID patients and during my lunch break, I lost my sense of taste and smell, hyperthermia at 38.2°C and headaches.
The attending physician thinks it's covid, but after numerous PCR and blood tests and a lung scan, I'm negative. These symptoms do not indicate contamination with SARS COVID.
My pains are getting worse, I'm nauseous, I can't stand light, I feel dizzy, I have tinnitus. I decide to go to the emergency room, but I'm referred to a general practitioner.
Diagnosis: migraine, painkiller prescribed. After 5 long days of dragging myself around, I decide to go back to see my doctor. The treatment is ineffective, I'm tired, out of breath, I can't stand the pain and the light any more.
Fortunately, he ordered a follow-up brain scan. The test took a long time (15 days). Two hours later, the radiologist calls me and tells me there's a problem with the cerebral venous return. The diagnosis is cerebral sinus thrombophlebitis and right transverse longitudinal thrombophlebitis. In simple terms, the vein in my brain is obstructed, preventing the blood from circulating normally.
I'm shocked! As a carer, I know what this means, and it's serious.
The radiologist suggests that I call my GP to let him know and to consult me as soon as possible for urgent treatment with anti-coagulants.
I hang up and tell my husband what happened. He tells me it's not serious, that we'll go and see the doctor. The phone rings again, and it's the radiologist saying, "Go to neurology, they're waiting for you. They know! Don't delay!
I do as I'm told and arrive in the department.
By this time, I've lost control of everything, and it's all happening so fast. The doctor orders further tests and puts me on a drip. I feel anxious, afraid of dying. The doctor doesn't comfort me; he's afraid there's something else that could explain this state. In the end, it turns out to be nothing; we can't find the cause of this cerebral thrombosis. The neurologist tells me it's very rare, but spontaneous ones do occur.
After 6 months, they stopped my basic treatment (oral anticoagulant: coumadin).
Madam, you're cured, there's nothing left on the MRI. I remember crying with joy. The nightmare was over. A release from a weight that oppresses my chest.
A fortnight later, I'm experiencing severe migraines again, I don't want to admit that it's happening again. The MRI has just diagnosed thrombophlebitis in the right jugular and carotid veins.
Like a sledgehammer, I collapse. Recurrence! Why me again! Fear of losing my life again. Fear of no longer seeing my daughter, my husband, my family. It's horrifying. I was put back on anticoagulants and went home.
Today, at 47, I live with this pathology and without anticoagulant treatment, because the thrombophlebitis is calcified and my work-up in search of an explanatory cause turned out to be negative. I'm followed very regularly by my vascular doctor and that reassures me. I still suffer from headaches when I do physical activity, climb stairs...
I make the most of the present, my daughter and my work, which I love. And above all, I try to enjoy the moments when the pain is non-existent.
I wanted to tell my story because there are people who suffer in silence, who live in anguish. And thank you for letting me write about my experience, my feelings.
Know one thing: you're not alone.
Thank you to "Agir pour le Cœur des Femmes", which gives a voice to women and works every day to ensure that they are better informed, better screened and better monitored.