Hemiplegic migraine?

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On the 3rd Jan this year I woke  up with the worst headache of my life. I was barely able to open my eyes as the light hurt so much and was absolutely exhausted. After less than an hour I had to go back to bed and slept all day.

I managed to make it to work the next two days but as I work in an office with strip lighting and being sat in front of a computer it was made much worse and I had to take the rest of the week off. After six days of this I went to the hospital where they rushed me straight through A&E . I was diagnosed with sinusitis and given a course of antibiotics.

A week later, after finishing the antibiotics and with my headache worsening I returned to A&E. By this point I was feeling very weak, especially in my legs, as I had also had severed nausea and hadn't been able to eat properly. I was admitted and kept in hospital for nine days.

During this time a number of things happened, I had innumerable blood tests, a lumbar puncture, a CT scan and finally an MRI. I was put on an IV of antibiotics and painkillers, given anti-sickness pills and eventually morphine as the pain kept increasing.

About halfway through my stay I started getting shooting pains through my right forearm and hand. The pain then started shooting through my right foot and leg, and I felt as though I was being stabbed in the right side of my neck. My headache was really severe in my right temple and spread down through my jaw. I was panicking as I thought I was having a stroke and they made me breathe in a paper bag, and gave me stronger painkillers. After an hour or so the pain subsided but my right side was completely numb. I could feel people touching me but it was as though I had no control over that side of my body. I was left unable to walk, I couldn't move my neck and essentially couldn't do anything for myself.

I'm only 26 and as a ski and water sports instructor this was the worst thing I'd ever imagined.  (I am only working in an office now as I'm in recovery from shoulder surgery)

When I asked the doctor and then neurologist what was happening they just told me they didn't kno. Eventually all my results came back clear so they discharged me, despite the fact I was still suffering with this headache and unable to walk. Some of the feeling had come back to the point that I could just about hop around if I hung onto someone, although that made me very dizzy,sick and raised my temperature an unbearable amount. They told me it was just a bad migraine and sent me home with paracetamol, cyclizine, fluticasone proprionate nasal spray and amitryptaline to take nightly to prevent it happening again.

the thing that irritated me the most was that they were only telling me to prevent it, when this one hadn't gone!

Ive now been out of hospital for four days and fortunately things are improving. I Do still have a headache, although it feels like a 'normal' headache now rather than anything more severe. I'm slowly starting to walk around unaided, however if I do so for more than a few minutes I have to nap afterwards. I'm generally feeling very exhausted though, and just want to sleep all the time. I'm still getting occasional shooting  pains through my right middle finger and up through my hand and also through the second toe of my right foot which then causes my foot to cramp and shoots through my right leg. 

I have read about hemiplegic migraines and this seems to be the only thing that fits my symptoms. My aunt is a nurse and she agrees. i read about the migraine centre in London and have made an appointment however it's not for a month. I've tried to make an appointment with my GP and the earliest I can get is in two weeks,  As I'm sure you can imagine this is really frustrating! 

My my main issue now is how long it's going to take me to get back to full health? This has been going on for almost a month now and I just can't  afford  to take all this time off work. Also I live on a forth floor flat without an elevator so I have even been able to go home as I cannot manage the stairs. 

This is is all just really frustrating, upsetting and scary as I feel as though nobody is able to give me any answers and I just want to know  when I can get my life back! 

Pany advice would be massively appreciated.

(I should probably also mention that I have never suffered from migraines before this, only the occasional headache but never anything severe)

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4 Replies

  • Posted

    lauran you have had the most awful experience and I do sympathise with you. The trouble with migraines is that you rarely find out the cause and that's the frustrating thing. It's obviously going to take some time before you are back to full fitness but I don't think anyone will be able to predict how long that will take. Everyone is different. I hope it doesn't take too long and you sound as though before all this happened you were a fit person so you have that in your favour.
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  • Posted

    So sorry to hear this awful story. Only advice is to ask the NMC if its possible to ask some questions over the phone to help get u through til your appt.
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  • Posted

    It sounds really terrible, i know the feeling as i'm 24 and an active person when the pain and numbness hits it just throws me.

    What you have experienced is horrible and hopefully it is just a one of and you dont experience one this bad again!

    there are some fantastic forums on here, so have a read and see the different medical advice that has been offered, short term just rest and stay positive!

    If you just need to share your experience then post on here and people are always here to talk with you about it.

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  • Posted

    Thanks for the kind words, I'm gradually feeling better and have managed to get an appointment with a migraine specialist next week. I'm not sure if he deals with this kind but it's comforting to know I can at least get some knowledgeable advice to tide me through until I get to the migraine centre. If I get any good information I'll be sure to pass it on! 
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