hello

hi just found you im 45 with hemiphlegic migraine and cerebellar ataxia type 2. i inherited this off my mum who didnt know anything about her family and where hers came from.i have 4 children and my 2 youngest (19) and (16) have inherited the gene we have all had genetic testing in the past. im wondering if there is anyone here who has the hemiphlegic migraine aswell.

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  • Wellcome! I only just joined recently as well. I don't have hemiplegic migraine but I feel my problem is similar. My current diagnosis from UCLH is Episodic Ataxia and I know it can be related to familial hemiplegic migraine. My symptoms are restricted to the right side of my body, and occasional dysarthria, head pressure and throat tightness are also only to the right side. Is your problem progressive? I don't know whether my problem will get worse or not. I have no family history of ataxia although my mom is pretty clumsy and she also has migraine. On a good day I will show no symptoms during neurological examinations even though I can feel my head is not right. Is your problem episodic as well? Did your problem came out of nowhere like mine or has it always been there since childhood? Apparently I am an unusual case cuz I had a normal childhood...

  • hi yes your symptoms do sound familiar to some of mine.my ataxia was episodic when i was younger but now they remain . my left side is affected during the onset of the headache yet my headache starts on my right side of my head progressing to my full head.my left side goes completly numb you would think id had a stroke. my throat tightens up i cannot talk yet my brain is aware of what is going on. my headache is torture i can only explain it as someone drilling it .then i pass out my pain level is very high but only a migrain hurts .nothing comes close.when i was a kid i could never do pe or anything that required dexderity my co ordination was always off.i had the migraine from about 6 yrs as ive got older both have progressed

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