Hemiplegic Migranes

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New Member

Date Joined Aug 2009
Total Posts : 2
   Posted 8/2/2009 7:29 PM (GMT -6)   
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.

New Member

Date Joined Apr 2009
Total Posts : 12
   Posted 8/2/2009 11:36 PM (GMT -6)   
Hi Nathalie,
Your migraines sound very similar to mine. Let me start off by saying how much I feel for you with these awful things and I know what its like trying to get answers. Your attack of six months ago which you describe sounds similar to the attacks Ive been getting since I was 10 years old. Im now 36 so Ive had literally hundreds of them. What I find amaising is that the way your mother describes you as a child is just how my mother describes me as a child and the diagnosis of peti mal sesuires almost stuck on me but luckly not. The attack you describe is similar to mine, however my paresthasia or numb tingling sensations only occures over half of my body sometimes the left and during other attacks the right this fits the description of hemi (meaning one sided) plegic migraine. The fact that yours occured similtaniously on both sides makes me suprised that you have been diagnosed with hemiplegic type. I would be a little concerned that your type is basilar artery migraine which occures over both sides of the body and can include the loss of consciousness. I have never heared of hemiplegic migraine causing loss of conscious. I wish I had loss of consciousness with mine and I can relate to how you look forward to blacking out. I also have had the confusion, slured words, loss of finding the right words,
inability to move my limbs properly, vision  all wrong, ballance out, numbness gradually moving over one side of my body including face tongue, arm, leg, foot etc however I have never been parellised and have been able to move but with severe lack of coordination. I have been on amitriptaline the drug you are on and I hated it I had the fatigue and huge food and sugar craving. Ask your doctor if Nortriptaline might be a better choice it is similar and may have less side effects. One extremely important thing I must mention, do not ever allow anyone to give you triptans or abortive migraine medications like Imagran or sumatripan during an attack. They used to give these to me and not only do they not work but they can cause stroke in these types of migrains. I have just found out they have tried giving them to my brother reciently. Please ask your specialist about this. I have the confusing problem that my mother has hemiplegic migraine just like mine but on my fathers side it seams the migraines seem more like Basilar artery. Mt grandmother went deaf in her early fourties and we dont know wether this was from migraine or weather she may have had Menieres Disease which is related to migraine. Either way Im now having problems with my ears. Its just my luck I inherited Hemiplegic  migraine disease from my mothers side and Menieres disease from my fathers. One hopeful note is that my migraines started to really ease of once I hit the 30 year milestone I hope this happens for you. 
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