hemiplegic and now vestibular migraines :(

Hi, I have just joined the site and been reading the messages. Had to respond to this one as i have been in a similar and very scary position. I had my first hemiplegic migraine in 1992. I was on holiday and remember coco pops running out the left side of my mouth and my left arm and leg going weak. The strangest thing was what my brain did, it felt like I was in an alternate world, very disconnected, my speech quickly declined and what I did say was gobble-de-gook. I was lucky my ex hubby was there to take me to the hospital and care for my 2 year old. My voice went monotone and I remember being asked in the hospital what day it was - my brain said Thursday but my mouth said Wednesday. I was admitted and had an ecg and a CT scan, all apparently normal. This started in the morning and by afternoon all I could say was yes - to everything! I was being given tea with sugar but I don't drink tea and take no sugar but that was my only answer to everyone. I couldn't count to ten or say my alphabet. I couldn't write but could draw simple pictures, which was how I managed to communicate with the nurse who were fantastic and patient. I frightened my little boy with my strange droopy face and funny voice. I was discharged the day after when I could say no. Time seemed to stop. It took about 6 weeks to get my speech back to normal and even now I feel my brain struggles with words, I mix them up, stammer, can't say a word even 24 years later. My leg and arm improved in 2-3 days but felt weak for a long time after. It was very scary. I saw a neurologist who said it was a hemiplegic migraine. But that doesn't help as I never got answers to any questions. He just kept asking if i had a headache - I don't remember having one but i do remember needing to sleep - lots. i am lucky and not had one the same since, but I do have problems with speech and words, brain fog, memory problems, tingling hands and arm, numb face on one side. And now I am being assessed for vestibular migraines as I suffer with dizziness and off balance that started with a 3 day vertigo attack in 2014. Migraines affect every part of your life and are desperately underestimated - i hope one day there will be answers, support and recognition for how it can affect every day life.

Good luck everyone and i hope you all find answers and help

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  • Hi, I have just spent yet another spell in hospital. I lost the use of both legs and arms on Sunday night at bedtime! No headache!

    I have now been diagnosed with Neurological Function Disorder..... so probably none of the hemoragic migraines were migraines it was FND, its a weird diagnosis as there is nothing wrong with the body, but the nerves don't send messages properly. From what I can understand it the body's response to stress with no cure. Just the Dr saying it may or may not happen again and you need to work through the symptoms, how ever |I am in panic as I can't do anything when all 4 limbs go 'awal', they have no suggestions how I would manage except I need a list of people I can call to help. Got to get my head round it, but this may explain some of your issues.

    Cathy

  • Hi Cathy. You poor thing! I was lucky my limbs came back pretty quickly within a few hours they started to feel like mine again but to lose all 4 limbs must have been so scary. A diagnosis is great but it obviously doesn't solve the problems and no one can go through life without having any stress. I hope you find a way to deal with your situation and I send big hugs. Migraines or whatever is diagnosed is not a good situation to be in and I hope that there are some answers and solutions out there that really work. Take care x

  • Thanks, just seen my GP who at least has been some help and supportive, though she doesn't really know much about FND. Thanks for listening and responding

  • Hi Cathy, it's my pleasure. I've found one of the best ways to cope is to talk to people who really understand. No one can live your life and know exactly how it feels but finding someone who can empathise is invaluable. Well it's helped me know I'm not alone and what I think and feel isn't that unusual from other sufferers. It's shit but at least we are not alone.

    I'm really pleased you have a supportive GP. I've got one too. But having no answers is no fun.

    Take care Deb x

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