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Anyone else with hemiplegic migraine?

(7 Posts)
MrsSam Tue 25-Oct-16 23:23:47

I hope this is in the right place, sorry if it isn't. I have suffered from hemiplegic migraine since DD1 was a baby 15 years ago. It first became an issue when she was three months old and my left arm refused to work when I tried to get her out of her cot one night. During an attack i lose the use of my left arm first and in a bad attack the entire right side of my body is paralysed.

I have been lucky not to suffer too badly and to only have 3 or 4 a year and I get about a twenty minute warning before it takes hold , (I have your bog standard type of migraine the rest of the time) until about a year ago. In the last 12 months I have had a countless number of attacks, most not lasting long but some quite severe. Two months ago I was taken in to hospital with a particularity nasty attack because the left side of my face fell and I could t speak as well as the usual paralysis, I have a massive family history of stroke and they were worried I was having one. Everything was fine, it was the hemiplegic migraine with vertigo, which was a lovely bonus, but it lasted 5 days. Since then I have had 3 attacks which have lasted more than 48 hours at a time and quite frankly I don't have the time for them! Four of my children have special needs and I really can't spare the time to lay in bed unable to do anything. DH dislocated his shoulder 8 weeks ago and he has taken a break from work to help with the children and thankfully will be around until after Christmas (DS4 has epilepsy which is uncontrolled and DS3 had ASD which means we are awake all night some nights) but I need to get this sorted before then.

I have had various preventers for my migraines and am currently on pitozofen and amitriptyline but it doesn't seem to be working. Does anyone have any recommendations or suggestions which may work?

Sorry about the long post

gingeroots Wed 26-Oct-16 08:46:09

MrsSam that sounds completely unbearable .I can't begin tio imagine how you are coping .

I don't have advice ( sorry ) but wonder if you've asked on Health Unlocked which seems to be a pretty good site ?

healthunlocked.com/migrainecentre

I do hope you get some solutions soon .flowers

MrsSam Wed 26-Oct-16 10:39:29

Thank you so much for the reply, I will head over and have a look. At this point I am open to any any all suggestions and offers of help smile

elfonshelf Wed 26-Oct-16 23:11:23

I get the odd one like that - whole left side goes numb and funny, slurry words, pins and needles in arm etc - the rest of the time I get 'normal' migraines with aura. Pain behind one eye, but none of the stroke-like symptoms.

Only thing that works for me was zomig and seems to be as effective on both sorts although I can generally get away with one tablet with the normal ones and may need a second with the others.

Have you been referred to somewhere like Queen's Square in London? They were excellent when I saw them and had lots of suggestions for drugs - got lucky and the zomig worked early on.

gingeroots Thu 27-Oct-16 09:32:46

So pleased to see a post from someone knowledgeable .

blush blush - just re read that ,not pleased that you suffer as well elf !

I've been thinking about mrsSam a lot and how much she has on her plate and how uncomplaining she is !

I've been having a few seizure type episodes myself ( nothing on scale that a lot of migraine suffers suffer ) and I'm now in awe of all those who have to cope with stuff which sounds like hell on a regular basis .

MrsSam Thu 27-Oct-16 19:55:42

Thank you elf,

I have tried some triptans, sumatriptan and rizatrapan but not zomig/zolmitriptal, I will speak to my gp and see if he thinks it would be good to give it a go. The problem with all the triptans is they are contraindicated in the aura phase of heomoragic migraine so I am always confused when its best to take them.

I am from a village near Cardiff in south wales so no London referrals but I have been seen by neurology and they were very helpful but its just so hit and miss. Its the trial and error nature for finding the best preventative drug which I find so frustrating. Really glad you have found something which works for you well though, its such a relief when something works!

Gingeroots, thank you for thinking about me, its always nice to be in someones thoughts. what seizure type episodes have you had? do you know what has caused them?

gingeroots Thu 27-Oct-16 22:50:06

Oh MrsSam that's nice of you to ask .

I don't know what they are - my vision is affected and I have horrible jerks like I'm being thrown about or like falling .I don't loose consciouness . I'm waiting for tests . I've never had anything like it before - I'm mid sixties .We shall see...

maybe zomig will work for you ? Do hope you can get it sorted .

I can't help but wonder if in this day and age of Skype etc whether one could be referred to a distant hospital without having to physically go there .

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