Suffering loss of use and altered sensation of hand/arm 5x now, time increasing each event, has any one else had this?

Hi All,

In November I suffered what I thought was my first hemiplegic migraine, side of face went all tingly, arm had and leg affected too, severe pain in back of head/top of neck. use of arm returned after 12 hours, head pain lasted another 8 hrs.

I then had my second which was slightly different less head pain longer loss of use of arm, went to A&E after 15 hours only to be told it was not a stoke!

I have had 3 more since but am having minimal head pain and length of loss of use of arm/hand is getting longer each time, last week it was 2 1/2 days. But my arm/hand remain weaker than they were before all this started.

I happened to be going to see my GP when my had was at its worst so she has seen it and she is writing to my neurologist, but I wondered if anyone else has experienced this?

6 Replies

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  • Hi.

    I have suffered tingling in my hand & arm & then my hand curls & I can't use/open it, often for days. But I was told this was neuralgia from a shoulder injury. It does aggravate the migraines & vice versa.

    I have only once experienced tingling then tremors in both hands, arms & legs. It lasted about an hour, then 2 days of a curled unusable right hand.

    My experience is a bit different, as the attack started with all the usual migraine aura, then tremors etc, combined with bad visual disturbances. This happened on Boxing Day & I still have the horrible visual disturbances, but have not developed what I know as a migraine.

    I think specialist consult is the best way forward when unusual symptoms occur. Hope you get some satisfactory answers.

    Kind regards, Catherine.

  • Not that exactly, although my headaches are followed at times by a loss of proper leg function - I end up walking like a robot but with intense fatiguability and it can last 48 hours, or years. Last relapse the week before Christmas was fortunately shortlived. First time it happened I ended up being retired from work, diagnosed with ME, FND and 'medically unexplained physical symptoms'. I keep my neurologist busy....the headaches seem to be connected but it is not clear yet (even after 7 years and multiple scans) what is going on.

    One hypothesis I heard that seemed plausible from Dr Mark Edwards at NHNN was that the originating migraine was of such severity (aura migraine with loss of co-ordination, balance, speech, and eventually leg function) that it knocked out some brain circuitry causing the original major collapse. There is perhaps an ongoing risk of short-circuiting, but it seems to be getting less serious/ I am recovering from the incidents more quickly.

    Hope you get some answers. It can be frustrating not knowing what it is that causes it, even if you get used to dealing with its effects.

  • Thanks for the comments. I too feel it could be down to the severity of the migraine, but not sure why the loss of use if sporadic. I had a condition called Thoracic Outlet Compression when I lost the use of my arm/hand but that was a constant deterioration and I had a rib removed that was growing between my shoulder blade and collar bone. My recovery was instant and no problems since. I did ask my pain consultant if the condition can come back and he said "No".

    All my CT scans have come back clear which is very frustrating as I know I am not imagining it!

    Like you Catherine my hand is stiff and it 'hurts' to uncurl it or curl it further-all very strange.

    I want to return to work or at least try, but I can't guarantee I will not go off sick again.

    Cathy

  • I have lost total use of my right side arm and leg, sometimes I am also contracted sometimes. This has happened more times then I can count, they symptoms look exactly like a stroke as My face goes droopy slurred speech etc. I have been told that they are complicated migraines.

  • I have had 12 hemiplegic migraines in the last few months, 4 in the last week. They are becoming more frequent and severe. As well as paralysing my right leg and arm, the right hand side of my throat is becoming paralysed. I have been taken to resus at A&E 3 times because they thought I was having a stroke, face drooping, slurred speech, weakness and paralysis on one side. The headache part of the migraine is becoming more debilitating. I am now on the waiting list for neurology, about 3-4 months, despite the danger of being unable to swallow when my throat is paralysed. I have now lost 80% of the feeling in my right leg below the knee.

    At least I have a diagnosis, I have read of some people who have struggled for years to get a correct diagnosis. This is largely in part to how rare hemiplegic migraines are, only about 0.01% of people suffer from them, equals 1in 10,000. Even some GP's are not familiar with this frightening illness.

    Has anyone had much luck with treatment from neurologists?

    Cheers

    D

  • Thanks Dunkdl, it sounds like yours are worse than mine, assuming mine are hemiplegic migraines, and to loose your swallow must be awful.

    I am having them about every 10 days, the last one being this week, lasting 2 1/2 days mainly left hand, arm leg (minimal headache), however on Wednesday morning my right hand was stiff and useless too and my left arm hurt and made me nauseous every time I moved it. I couldn't even dress myself. I went to see the GP (a long slow walk), who is now trying to get me seen sooner with neurologist and find out what tests he might want prior to seeing him, (not heard back yet).

    Have you spoken to the Migraine Nurse from Migraine Action? She is really good and so helpful, well worth the money to get her advice, she spoke to the consultant she works with (a Migraine specialist) who gave her suggestion of drugs to try if my next lot of botox doesn't help.

    Hope you get seen soon, it is very frightening. Take care C

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