hello. my name is Nathalie. i was 10 years old when i had my first attack. i had always suffered from headaches and was generally unwell as a young child. my mum used to say i looked like i was in my own little world as i would sit and stare and wouldn't respond to anything or anyone talking to me! i had 3 attacks and was diagnose with grandemal epilepsy. i had mr scans done regularly which all came back as normal. i was treated for epilepsy till i was 18, then weaned off anti-epileptic drugs for 2years as i went fit free during that time. i still suffered with headaches through my university days, i felt extremely tired all the time and couldn't seem to stay awake. i literally need atleast 10 hours sleep a night just to be able to function the next morning, then would have to go to bed in the afternoons. i battled with this for 3 years, i started to feel removed, i would feel like i was daydreaming and would go blank mentally and visually. the headaches were still as painful as ever. in 2004 i went to see a neurologist who diagnosed me with complex partial epilepsy, i had to quit work, was put on yet more medication, but none of them worked, i had extensive tests done in hospitals and was then told by another neurologist i was never epileptic and i had been misdiagnosed. as you can imagine i was very angry and confused. i then went down the medical route and had tests on my stomach, colon, thyroid and adrenal glands, i had blood tests after blood test ..all came back normal.
about 6 months ago i was sat on the sofa with my fiance and felt unwell, i felt like i was going to have a seizure or a blackout, but something was different this time. i couldn't feel my right hand, then i felt a trickling sensation up my right arm, i went to stand up and couldnt hold my weight, my entire body was numb, i then blacked out and when i woke up i couldn't speak or move. my fiance thought i was having a stroke, i'd had a few attacks like this in the past but was seen by the docs to be an epileptic seizure. the next day i went to my doctor and told him. he expected i'd had a TIA and sent me to a heart centre, who then referred me to a neurovascular specialist. he asked if i'd ever suffered from migranes. i had a stereotypical view that a migrane was just a bad headache and although i had them i wasn't affected by bright lights and had to sit in a dark room (how wrong was i!) he started to talk to me about hemiplegic migranes and the symptoms, they sounded very familiar to what i had been suffering with all of my life. this was 3 months ago. i am now 30 years old and have been put on amytryptiline, i have to go up doses every 2 weeks till i get to 50mg a day for a month then i'm being put on channel blockers aswell. the medication is making me very drowsy, but i'm hoping that will wear off in time. i am only just learning about this rare condition. in some ways i can't believe it has taken the specialists this long to find what was wrong with me. i'm still having attacks, my last one was a few days ago. i tend to have headaches which can last for weeks, i become confused and my speech is mumbled, i say things backwards and can't seem to get my words out. i have dizzy spells and pins and needles in my hands legs and feet. i am generally weak and extremely tired. i seem to find all of these symptoms the most debilitating, it may sound strange but sometimes i look forward to the blackouts because i know after ive had that it is the end of it all and i feel better for a few days before the symptoms start all over again. i just hope that the doctors have got it right this time and the medication will work to prevent my symptoms. i noticed there isn't much on this condition, so it's comforting to know that there are forums so i can share my story and listen to others and learn more about my condition.