Hemiplegic Migraines

[123mif]

Does anyone suffer from Hemiplegic Migraines? Can you recommend a specialist? what course of medication do you use and is it successful? I am currently going through investigation for this, awaiting diagnosis. I have no control over my symptoms which affect me everyday, mainly left sided weakness and major fatigue. I have tried Propanalol, Topomax and Amitryptaline so far but no success. Would appreciate any advice, experiences you could offer. Many thanks.

[MaryF]

Please get tested for Hughes Syndrome/APS, even if only to rule it out, Hughes Syndrome also comes with severe fatigue and often a tendency for thyroid problems and in some Sjogrens Disease, the tests are simple and cheap for a GP or specialist to do: hughes-syndrome.org/about-h...

Best doing these tests either early in the morning with GP or directly at the hospital as the samples are time sensitive, so not a good idea to be left lying around awaiting courier collection!

hughes-syndrome.org/about-h...

telegraph.co.uk/news/health...

dailymail.co.uk/health/arti...

MaryF

[123mif in reply to MaryF]

I have been tested. I saw Dr Khamashta at Guys Hospital, London. They ruled it out. Thanks for your message.

[MaryF in reply to 123mif]

Great well he is one of the best, and if he has ruled it out, you are in the clear! The symptoms between the two things can be very similar, and some people can have both! MaryF

[FN75]

I do indeed! Not many of us out there! I've also tried those drugs and they varied between useless and horrendous. The only thing that has helped me, sadly, is Prostap (removing all my oestrogen)!

I am currently experimenting with magnesium/B6, caffeine, cherry juice and a world of other supplements in the hope that one of them might help.

[123mif]

Nice to hear from you! Like you say not many of us around. Do you see a specialist specific to HM? I've just started experimenting with supplements/diet etc. The next drug I have to try is gabapentin. The hardest thing to cope with for me is major fatigues, I wondered if you had this difficulty and how you manage it? Thanks.

[HoppyD in reply to 123mif]

Hi. I've suffered hormonal migraines for years. I thought that's what I had back in January but was actually a stroke. Slow recovery over past 6 months including what were two further suspected strokes that fortuneately turned out to not be the case but have been put down to possible HM. Twice now completely lost all use of what's left of my left side. Freightens the life out of not only me but hubby and kids. Also puts my recovery back to how I was after stroke and have to start rebuilding my balance, stamina, coordination again. Frustrating is an understatement. I take lowest dose amatriptaline at night to help me sleep and also on medium dose of gabapentin for neuralgia and nerve damage in my face. Hope you get sorted soon and find some relief.

[Pear_8 in reply to 123mif]

Gabapentin was so horrible for me so many side affects. But may be fine for you I am under Dr surenthian and Dr Ellis Kings and someone at queen square London- new one don't know the name