Hemiplegic Migraines/Mini Strokes

[skippy]

Omg. I think I have this, yet have somehow never come across the term, in all my years of research. It's just always been termed 'migraine with aura'.
But I just did some research and for once all the other crazy symtoms came up. (now I had a name to search for- thanks!)

The paralysis on one side of the body, fever, defective muscle coordination, confusion, not being able to speak coherently. Not to mention the mother of all agony in the head.

I can really empathize with the absolute terror when you see those lights.
It is so frustrating to me when someone says "I've got a migraine" whilst carrying on with their life... They render me a wreck. All I can do is lie in bed, helpless, terrified that it's a stroke.
Don't know how the hell I'm going to cope when the inevitable happens and I have one when there's no one around to look after my baby..

Anyhow, thanks for this post. I am due a trip to the doctors soon, as in the past few months they've started again, and so I was going to enquire about stronger meds. Now I'll have a name to ask about, maybe I'll get somewhere.
Another thing that makes me want to kill is when the doctor refers to them as "headaches" Argh!!

Glad I could help and if you're really worried hun, get some migraleve, its over-the-counter and you can get it in boots, it worked the first few times with me BUT I have them so often they soon lost their effect and I found with the doctor you HAVE to describe every single bloody symptom you have with real emphasis before they give you some painkillers,

hope your doctor listens and you can stop them

 

[Sommerfugl]

I have actually been prescribed stuff for them, Maxalt Melt, but I can't say it does much... but the doctor always tells me that's the strongest thing they can give me, which I'm sure is a lie. *sigh* I'm hoping if I could go in there with a name, sounding like I know what I'm talking about, they might take it a bit more seriously and not talk to me like I'm having "bad headaches".

I suppose I am lucky in that the severity seems to have toned down a bit, they're still scary and disabling though, I feel for anyone else that experiences these horrible things! It must be fricking awful for you to get them so frequently, I think I would always be on edge, paranoid that one is around the corner.

 

[skippy]

Hope your doctor takes it seriously this time! I don't think doctors who haven't experienced them realise how they actually make you feel, I can't do ANYTHING during one, its terrifying.



And yep, Constantly paranoid! Especially when like I look directly at a light or the sun or something and I get a blind spot and its like *overwhelming feel of fear* even though I know its cause of the light and not a hemiplegic migraine coming on and like being in a half-lit room is terrifying - i'm run up a huge electricity bill because of it, oops! I really have become SO paranoid about EVERYTHING, and so has my OH! He even stopped us going to a concert because he thought I might get one during it, I'm really lucky to have him actually, he cares for me during them and I don't know what I'd do without him...

 

[Samemka]

I get them too and can totally sympathize with you.They can be really debilitating.Ive been prescribed Propranolol (this is a beta blocker)which as supposed to help prevent them - I take 2 of these every morning and also I have Solpadol for when I actually have an attack.

Propranolol - thats what I was on!!

 

[sma1588]

im glad i dont have it that bad but ya my vision just starts to blur and things look like there bouncing, then i go numb and feel like i have needles in my legs and stuff.
my OH really doesnt know what to do and he doesnt understand whats going on

 

[Katieeeee]

I get them too and can totally sympathize with you.They can be really debilitating.Ive been prescribed Propranolol (this is a beta blocker)which as supposed to help prevent them - I take 2 of these every morning and also I have Solpadol for when I actually have an attack.

Propranolol - thats what I was on!!

Oh god, they didn't prescribe me that for my migraines but they prescribed it for my anxiety disorder....I never took a single one!

 

[Sommerfugl]

I know what you mean about when you get a blind spot from looking at a light, scary! And I'm the same with the darkened room thing, it seems like I permanently have some sort of lighty thing in my head, so when it's slightly dark I can't help but concentrate on it and it's really off putting and worrying.
Nice that your OH is so understanding, mine tends to just look at me like I'm a bit nuts when I start stressing when I think one is coming on, he has been a bit better since LO has been here, though.

 

[skippy]

I know what you mean about when you get a blind spot from looking at a light, scary! And I'm the same with the darkened room thing, it seems like I permanently have some sort of lighty thing in my head, so when it's slightly dark I can't help but concentrate on it and it's really off putting and worrying.
Nice that your OH is so understanding, mine tends to just look at me like I'm a bit nuts when I start stressing when I think one is coming on, he has been a bit better since LO has been here, though.

Yeah the first few times he was a bit freaked, I turned into a right cow apparently, just had to explain that I was in a LOT of pain and really not responsible for anything I said or did, and I can't remember most things during the migraine. You should try explaining everything to him, it really worked for me, he's amazing now, I kept him up all night one time and he had to get up at 6am the next morning, he got like 10 minutes sleep before I woke up with a migraine, poor thing.

 

[poppy fields]

I have chronic (daily) intractable migraine and have hemiplegic migraines too. If your GP is not confident or able to help you I'd ask to be referred to a headache specialist (not just a general neurologist as they often are not as well informed on migraine).

I've tried pretty much everything for them and the things that have worked seperately in the past were sodium valproate, gabapentin (anti epileptic drugs ) and flunarizine (which isn't licensed in the uk and has to be imported in). All of them stopped working after a time though.

Since I've been pregnant I've actually had fewer hemiplegic attacks. One of the reasons for this I think is that I've been taking omega-3 supplements for some time and the effect, which started before I got pregnant, seems to have increased with time. I take flax seed oil capsules and a vegetarian DHA supplement from algae, both from healthspan. They have helped more than any drug I've tried.

Also, be careful about taking triptans (eg imigran/sumatriptan/maxalt etc, lots of different ones). They are often not used in hemiplegic migraine as they constrict the blood vessels and this, along with the migraine itself, gives a higher risk of stoke and cardiovascular side effects in hemiplegic migraine.

Good luck!

 

[Justme]

I get them too and can totally sympathize with you.They can be really debilitating.Ive been prescribed Propranolol (this is a beta blocker)which as supposed to help prevent them - I take 2 of these every morning and also I have Solpadol for when I actually have an attack.

Propranolol - thats what I was on!!

Oh god, they didn't prescribe me that for my migraines but they prescribed it for my anxiety disorder....I never took a single one!

Yeah apparently it can be use for a few different uses like prevention of migranes,regulate blood pressure and for anxiety like you say.I havent noticed any bad side effects of it myself,been on it about 16months now.Did try to see if I could come off it but sure enough the migranes started to come back more severe and regular.When I do start TTC though Im going to have to try to see it through though as dont want to be taking them then x