Hemiplegic migraine

moldypeach

Hi everyone
I was wondering if any else in Ireland suffers from this? I have been back and forth to hospitals and doctors and it is driving me crazy.
I get these up to 4 times a month in which i get sow thinking and my whole body goes numb down the left side so i can barely walk at times.
My doctor has me taking amitriptyline 25mg every day to prevent them as i can't use calcium blockers due to low blood pressure.
I hate these tablets i just find i can't function properly on them but i don't know if not taking them will be better and dealing with the migraines even though they could get worse and cause stroke or seizures or even comas

I'm just wondering if anyone has any advice out there or know of any specialists in this area at all.

thanks

morobar

I don't suffer from that specific type of migraine... mine are post-traumatic migraines (as a result of an accident)... anyway, I was on Topamax, Imigran, beta blockers and various other tablets over the last two years... I'm currently on Amitryptaline 25mg and Zomig as an abortive. All I can say is that the Ami helps me sleep and I find that the earlier you take it (I usually take it around 7pm) then the next day the groggy/sleepy feeling diminishes somewhat.

Best of Luck

moldypeach

i stopped amitriptyline now the side effects were too much so now im on inderal. I think it's very rare so not many studies have been done. hope these work

Ostrom

Hey OP,

Mine are similar, but not as frequent. I have had the same feeling of numbness (got me shipped off to the Mater first time it happened, GP thought it was stroke). I manage the headaces with diet, as foods are my main triggers, and have abortive meds just in case (Zomig). I'm constantly dizzy and spend 50%+ of my day feeling as if I'm about to fall over. I wouldn't worry, I saw a neurologist recently and they are relatively harmless long term. I'm not sure if stroke has been identified as an independent risk in migraine sufferers from what I have read, but I know it increases overall risk by a very small amount.

I dont know if this sounds familiar, but I can tell when I wake if its going to be a headache day or not. I cant tolerate shaking my head or looking up on migraine days, and I usually catch the attack before it starts by eating well and taking some aspirin.

moldypeach

yeap i have a neurologist too, stroke is increased by having these and because i smoke still it's increased even more, i have been put on inderal as abortives and fingers crossed i haven't had one in 2 weeks . I'm lucky enough not to suffer with any pain though. my triggers are hormones and weather so not much i can do lol it would be nice if there were more studies on it just for information purposes

Ostrom

moldypeach wrote: »

yeap i have a neurologist too, stroke is increased by having these and because i smoke still it's increased even more, i have been put on inderal as abortives and fingers crossed i haven't had one in 2 weeks . I'm lucky enough not to suffer with any pain though. my triggers are hormones and weather so not much i can do lol it would be nice if there were more studies on it just for information purposes

I read up a little on it before, there is an established risk of (I think) 7 in 1000 (the respective ratios are the same anyway). This type of migraine doubles your risk, but even so, raises it to the order of 14 in 1000, or thereabouts. I'll have a look for the papers again. I dont think there is a conclusive physical causal relation between the migraine and stroke though. I'm not a doctor so am well open to correction.

NickD

Hi guys, I'm so happy (sorry that sounds awful) to find other people who get hemiplegic. I have had them since I was 17 (31 now), my left side just dies on me! The pain can last for anything from a few hours to 5 days (that was awful) I'm on a tonne of meds now, including epileptic medicines and anti-depressants, they are working a charm.

loveisdivine

I dont get hemiplegic migraines, but I do get migraines that come with very intense visual disturbances. My vision is actually permanently "disturbed". So I did a fair bit of research on the stroke risk and from what I read it does increase the risk very slightly, but still the overall chance is tiny.

abbiesmam

Hi all Im also a hemiplegic migraine sufferer for the last 17 years. i got them weeks after birth of my 2nd son. Im now 42. They have now developed quite severely over the last 6 months. I suffered a seizure and since then i have had them more frequently now on a weekly basis. I am barely existing now. can you recommend a good neurologist ? great to know i'm not on my own...x

DipStick McSwindler

This post has been deleted.

abbiesmam

hi, if its hemiplegic I'm on topamax and verapamil as preventative. but i have to take too many meds when an attack strikes.
i get full left side weakness with facial paralysis. loss of speech and swallow. with severe pain in left arm. problem with toileting. recently i was left with problems with my gait and had to go on strong steroids to correct it for 3 weeks.
frovex helps initially . but i have seen studies that triptians can be a stroke risk?

thats my big worry?

im on tramado, diclac, axaicalm during a big attack( hate, taking tramadol, gives me terrible constipation and itch)

also my meds are not working i need to find a solution

L1985

Hi all-just a slight note of hope here.i had hemiplegic migraines for over 10years nothing was working to cure them lost 18months of my life to them as I was getting2-3 per week. Was on topamax etc and it helped. Last November I decided to go on a sugar free diet. I wasn't a mad sugar eater never drank fizzy drinks so didn't expect it to affect me too much. Went off it and I've had one not very bad migraine since. Couldn't believe it as nothing else worked.i could never seem to identify my triggers but this has made a huge difference and I really didn't expect it. Just to make ppl aware as I wasn't aware that sugar could be such a trigger.hopefully it helps other ppl I'm off migraine tablets for the first time in 10years!!

abbiesmam

Hi all
just to let anyone else with this to be wary of what just recently happened to me.
i was put on amitriptyline back in september. basically on 23/09 i was brought to local hospital with seizures.
they were from the ami interacting with my antidpressant lexapro, also the ami interacts with topamax. as i had a migraine few days previous i had taken my allowed pre aura triptan.
but they reacted with me as hemiplegic migraineurs do not release the seretonian properly in the brain, so all the seretonian based meds built up resulting in the seizures.

looking for a new neurologist.
Off all meds now besides : thyroid med and verapamil 250mg.

Got my 1st hemi sunday since the hospital. lasted 2 days, a lot of twitching but i got through it just taking 2*anxiclam 2mg to relax the muscles. i was quite bad 1st 14 hours but am fine now.

i was scarily overmedicated which could have finished me...
said i would post to warn others....