Hemi plegic migraine

Hi Folks only just found this site today and I would like to ask a question-a rather long one!!

In May last year I was taken in to hospital with left sided weakness with pins and needles and numbness which was query a stroke I was scanned and told all was well and sent home. The symptons remained and I then lost my speech was scanned again and sent home. My speech returned over the following 2 weeks and then went again 2 weeks later again to come back over the following 10 days. I have to this day got a stutter at times. My left side is still much weaker than my right and pins and needles and numbess controlled by Pregablin 3 times a day. On my visit to the neurologist I was told I had Hemiplegic migraines even though did not have the headache. I was discharged. Has anyone else been given this diagnosis? Do you think it is reasonable to ask for a second opinion as the symptons have gone on so long. I have constant pain and fatigue which is so bad I have had to retire on ill health grounds. I would appreciate any comments thanks so much in advance

Sue xx

11 Replies

  • Hi Sue , my niece has the same, for a long time ,sometimes she is not too good mainly when she is stressed, but other times she seems fine and for a long period. It does not seem to interfere with her life .

    She goes on holidays etc etc. I hope that gives you some encouragement.

    It is always good to get a second opinion as other specialist may have better or I should say newer treatments to offer.

    Good luck T x

  • hi sue

    I was told I had this migraine in Feb this yer after along time of episodes like yourself .I am still worry that they got it wrong as sometimes I am in bed all day not able to talk and have no strength and pain in my arms and legs. I have given up a good job which I loved because of number of sick days I have had over three years it was not fair on the children I worked with. I have no headache but do have shooting pains in head .My mum keeps saying i need a second opinion but I feel after reading about it on different site it seems to be all the signs of Hemiplegic migraines . I hope things get better i found it difficult at first but getting better by understanding the condition and not over tiring my self and not stressing helps.

  • Thanks take care. X

  • i have had 9 attacks of what they call migraine stroke. i have had this one for 7weeks now and this time it only my walking, most time face go on one side. it a waiting game to get back some of what we call normal. i had all test like your self but they not know alot about this condtion and there no help as doctors not know enough how deal with. i on beta blockers and yes it held off 2 years but now back where started. i had my frist attack when i was 21

  • Thanks for your reply take care x

  • Hi Sue, I've had migraines on & off for ovet 30 years but in 2005 I had what I was tolda at the time was a stroke & over the next week had another 2 leaving me totally paralised for a while but eventually got most of my speach & movement back but need to use a stick, or two, to walk. I was eventually sent to a neurologist whe told me in no uncertain term's that I'd not had a stroke & it was a hemiplegic migraine & I'd be fully fit withing a couple of week's.This was already 3 months after my first attack's & I couldn't walk or talk properly. I had to be retired from work & after 7 years I've just had my 18th major attack. I've had nearly 60 with just a weak arm, leg or dodgy speach but I'm just taking beta-blockers to ease them off but like you all say it's just a case of pacing yourself. I do find that wearing a collar while traveling didtances help's me to keep my speach & ability to walk after a journey.

    I was told by a doctor once that the hemiplegic migraines are the major arterie's in the centre of the brain either expanding or contracting & affecting the brain around them. He said there was nothing that could be done but the beta-blocker's would help ease the arteries. I would go for a second opinion at a migrain clinic even just to ease you're mind hun x

  • Thanks for your reply and I wish you well x

  • i have had hemi pleagic migraines now since 1998, in 97 i was diagnosed with M.E, which is now chronic fatigue... in 98 i had my first episode, weakness down right side slurred speech and was admitted to hosp and told i had had a stroke.... then told it was nt a stroke and was a probable diagnosis of hemi plegic migraine, without the headache, I have had several admissions to hospital with them now,I found docs locally to be unsympathetic, after being told to find a rich man and ignore housework!!! told i would get better then!!! so I spoke to my gp, and went for second opinion, I was told that the severity of my attacks would eventually put me in a wheelchair and i would loose my speech!!!! and prescribed epilim, my worst attack followed the next week in 2005, totally paralyised on the right side, admitted to a stroke unit spent a month in there and suffered 18 non specific seizures too!!! I requested to be sent to the hosp i was being treated by and told the funding was not in place for this and i could get a friend to drive me there!!! obviously no one wanted that responsibility due to the distance, I was then sent to rehab and had to learn to walk again and spent 2 months in there, I left there in a leg brace, which now is not used. I have had several attacks since, during this period I have been tested for lupus but the results come back negative, albeit I have all the symptoms and skin discolourations now!! I have never managed to get a definate diagnosis of this, and have had no further tests than the original ones to prove it is any different with my second opinion. I am now desperate, tired and in lots of pain with a marked weakness on my right side, speech problems sight detrioration, hearing loss!!! sensation loss on the right side, which means i feel no pain sometimes and have broken bones and not realised at the time!! I know this is a long story but I have only recently discovered this site and read of others suffering too..... can anyone give any advice please? I am now 48 years old and it takes longer to get over the episodes and cope with the weakness ;-)

    Thank you

  • Hi I couldn't help but read the answer to sue on here today, I have had a spate of this kind of problem, I also had M.E. quite a while ago now, I survived it then.. If you don't mind answering me, what kind of skin discolouration do you have? and Is it brown. I have the very same thing on my forehead, it looks like Ive got a suntan permanently there.

  • Hi thanks for your reply you are certainly having a bad time. I do not understand this condition and had never even heard of it before they told me that I had it anyway take care Sue x

  • Hi Sue

    Yes, finally, I have found someone diagnosed with the same condition as me, I lose my speech at times and started to stutter and repeat some words, although I can not help this I feel so silly when it happens. I simply can not afford to retire and I am having migraines on and off, these kind of migraines return, I thought I was out of the woods the last time the doctors sent me home with a question mark stroke/hemiplegic migraine. I still can not fully understand how or why I started getting them. They can vary in severity from day to day. I have recently been to a neurologist in the East Sussex area, he prescribed me Topiramate tablets which are anti-epilepsy medication, looking at the side effects, I am so unsure if they are worth a try.

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