hemiplegic migraine

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New Member

Date Joined May 2006
Total Posts : 2
   Posted 5/21/2006 5:03 PM (GMT -6)   
 hi everyone, i have just been diagnosed with having hemiplegic migraine's.  having just spent the better part of 3 weeks in hospital having every test known to man, ie ct scan, mri lumber punch, blood tests etc etc etc. the neuro doc then told me that his best guess was migraines. i get all the symtoms of someone who is having a stroke, but all the tests came back normal. i have had 17 attacks in the last four weeks, some of which i have gone unconscious, i have all the left sided weakness which at the moment has lasted for up to 42 hrs... can anyone tell me if this is going to continue like this or will they ease off. the reason they took me in to hospital was that when i have a bad attack i find it difficult to breath and need oxy.. all this going on scares the hell out of me and the constant pain is sometimes unbearable.. can anyone shed any light on this for me because i dont think the docs have much of an idea what is going on in my head.
     many thanks pixy..

Veteran Member

Date Joined Jan 2006
Total Posts : 1308
   Posted 5/23/2006 3:47 PM (GMT -6)   
Hi Pixy, Welcome to Healing Well. Sorry you are going through all this. As Hemiplegic Migraine is so rare there are few sufferers around, but I am sure that before long someone will respond with better knowledge than mine. Was it the Neuro that diagnosed you? If it was he should be able to give you a good idea of what to expect himself.

Please keep in touch as to how you get on, I know it can be very scary but you can vent here whenever you like, you will be in my thoughts and prayers. Take care Ann.

New Member

Date Joined May 2006
Total Posts : 2
   Posted 5/23/2006 4:38 PM (GMT -6)   
hi ann, thanks for the reply and kind words, just to let you know the count has now gone up to 19 attacks,  back to using a walking stick again.  sad i have got to see the neuro doc in about 8 weeks for a check up [from the neck up ha ha]
 who knows maybe they could shed some light on this then.
         the only thing they could come up with, was to say it was down to diabetic brain!
 i have been a diabetic for 29 yrs, at this moment in time i suppose i consider myself lucky that it wasn't 19 t.i.a's or mini strokes that i hadotherwise i might not be able to type this at all.
  well thats enough of me feeling sorry for myself.   thank you very much for your kind thoughts look forward to speaking in the future,  many many thanks pixy

New Member

Date Joined May 2006
Total Posts : 1
   Posted 5/31/2006 3:28 PM (GMT -6)   
I don't know if this will help, but ... My wife has a family history of "fits", as she likes to call them.  Her mother, grandmother, and aunt also have these "fits".  They had no idea what they were, they always went on the medical information that her grandmother received 50 years ago, which really amounted to NO HELP.  During these fits, her hands and arms go numb, she gets a headache, she becomes somewhat disoriented, and she sometimes will lose her speech.  This past week, she had a clonic-tonic seizure, which was unrelated, according to the ER doctor.  But based on the information that we gave to the doctor, including her family history, he has been the first person that we have seen to put an "unofficial diagnosis" to the "fits".  In her case, it is familial hemiplegic migraines.  We're going to see a neurologist next week because of the seizure, and hopefully he will be able to provide a little more information regarding treatment and prognosis.  We are fortunate in the fact that the migraines are not frequent, and she may go years without experiencing one, but we still feel like we need more information in order to move forward. We will be praying for your difficulties, and once we get some answers, we will hopefully be able to share them.
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