We are on 2/03/1994, I have just collapsed in the middle of the shopping centre, I am 8 years old, I have just had my first attack of Hemiplegic Migraine… my medical wandering begins… My name is Justine, I am 36 years old. I remember my mother's anguish when I woke up; after eating a lot, then vomiting, I slept a “lead” sleep for 4 hours. She couldn't wake me up. In 1994, migraine is not known.
The triptans are just starting to appear. At 9 years old, I go through all the neurological exams; the diagnosis falls; Your daughter is epileptic . Over the crises, the diagnosis evolves " it's maybe tetany ". Medical wandering, for a child, is terrible. We spend our time trying to justify a pseudo disease that no one sees. My close family was a real support, I never had to justify anything with them. On the other hand, the rest of my entourage did not understand and worse still did not believe me; “ she's pretending, she needs attention ” “ stop playing her game …” At school, they took me for an imaginary invalid, accusing me of being interesting. Around 10 years, in parallel, I started beautiful pyelonephritis. This will require care at the Children's Hospital of Paris; " in addition, she has a double ureter in the kidney ". My teenage years were not a happy time. Lots of crises and lots of "little sores". Despite this and thanks to the support of my parents, I passed my patent and I even got my baccalaureate. I spent this period of my life with a lot of anxiety and stress; constantly fearing that SHE would pop up anywhere. When I passed my license, an additional stress arrived. “And if I couldn't stop in time” … And then finally, I dropped out of this situation around 18 years old.
I set myself crazy challenges; hard work; Housekeeper, grape harvest, distribution of newspapers, Do my studies in boarding school, work-study, combination of professional environment and school environment. Challenges, always challenges, interspersed with crises called at this time migraines with neurological aura. The more there was at stake, the more I got involved. I left feathers there, my hemiplegic migraine has evolved; vestibular, ophthalmic… but ultimately it built me and forged my will. I followed many therapies, saw specialists, convinced to treat me… all of them committed to treating my migraine, but no. I went through LOTS of treatments; anti-epileptics, anti-depressants… it cost me 20 kilos. I studied, today I have the equivalent of a master's degree, despite everything. I have an acknowledgment of disabled worker. Today I have two children, a responsible job, a house and a husband who supports me and protects me in the event of a hemiplegic migraine attack. I have a regular follow-up with a neurologist, I had the chance to test new treatments. The migraine is still there! I take care of myself, I even managed to lose weight. I stopped consuming sugar and I regularly see specialists in alternative medicine (osteo, accupuncturist, EMDR…). I worked a lot on acceptance… SHE is there, SHE exists and is part of me so I have to make room for her in my life.
