Hemiplegic migraine and APS

[amy1808]

Hi just wondered if anyone on here has both Hemiplegic migraine and APS

[Bsharon]

Hey amy1808 . This is the first I have heard of hemiplegic migraine but once I read up I completely suffer from them and I also am APS positive. My neurologist has me on a 50mg dose of toprimate nightly as well as low dose aspirin and 500 mg magnesium which helps but I still suffer from some of these symptoms . Mostly vision and dizziness . But do occasionally have numbness from time to time .

I had a horrible flare in the spring which resulted in an emerg CT and MRI . The internist and neurologist on duty thought it was either stroke or MS . Everything came back negative and I started the toprimate soon after . I hope this info helps or if anything comforts you to know your not alone .

[lucymockingjay in reply to Bsharon]

I hope you find the topirimate helpful. I have hemiplegic migraines alongside ea2 as it is often caused by the same lovely gene as it can be genetic. At its most severe i can be unable to move or speak for days. I can sometimes blink to respond to people. Then gradually move to squeezing a hand as I gradually improve so fun and games. It can be avery frustrating condition sometimes.

I also take anti sickness tablets every day which has made a huge difference so although I still feel sick a lot, I'm not actually sick as constantly as I was.

I don't like going into hospital as I nearly always end up having a Hemi-migraine when I'm in there and it takes doctors ages to figure out what is wrong with me even though it is plastered all over my notes! I appear to lose consciousness at the beginning so even though I can hear them I can't respond to them which is annoying when they are causing u pain to get a reaction! I just love my body sometimes lol

In all seriousness, it can be horrible but you are not alone and whilst rare there are a lot of people who have this condition to varying degrees. Just try and keep a sense of humour about things and all will be fine in the end.

Hugs to all Take care xxx