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jimmy9800 t1_j5lyyt0 wrote

Reply to comment by thatsalotofcats in TIL about a rare kind of migraine that mimics a stroke, called a hemiplegic migraine. by simulatislacrimis

Im glad yours aren't too bad. I wouldn't mind the auras so much if the headache was nicer. I get cluster headaches after the auras finish for me if I just power through the auras, and will go to the hospital for monitoring if I know one is coming. They are terrifying. I'd rather have kidney stones every week than go through that.

My triggers are kind of odd, and the whole thing is related to a tbi I had ice skating when i was 7. Jumping (including running, which sucks), dark chocolate, violent vomiting, and pulling all nighters are all pretty reliable at giving me a migrane. I still get the odd one for no reason once a year or so, but I can make myself have one if I jump rope for 5 minutes. Comes in handy for fmri imaging, as long as they have sumatriptan to stop it before it gets bad.

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thatsalotofcats t1_j5ma4us wrote

Oh man that’s terrible!! I’m sorry yours are so terrible. I wish they could figure out how to stop them forever.

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jimmy9800 t1_j5mf39r wrote

Thanks for the camaraderie! Good news is i kind of have stopped the worst of it. I don't care who tries to get in my way, if I feel auras coming on, I go home and lay down. I've got about a half hour to get somewhere dark and lay down and there isn't a force on this planet that could stop me.

Caffeine helps me get out faster, and emergency sumatriptan has worked well as well, but increases my risk of stroke, so it's truly emergency use only for me.

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thatsalotofcats t1_j5mk3mo wrote

I’m too scared to take the sumatriptan (or anything else) so I just suffer with it. Get in my bed and bundle myself up with cozy blankets and try to sleep. The auditory hallucinations are bad sometimes though. I remember the one I had June 1st after I’d been watching Stranger Things…parts of the running up that hill song were literally swirling around inside my head for a day and a half. And had some pretty bad nightmares that night too (never had them about ST before and I’ve watched it too many time to count lol). Brains are weird sometimes.

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jimmy9800 t1_j5mkmjh wrote

For sure. Sumatriptan is definitely a case-by-case drug. I know I'm not ok to drive after I take it. You might look into Goody's extra strength headache powder. It works well for me once I just have the headache. It makes it go and stay away for me. I don't know if I'm jealous of your auras or thankful! Mine are pure noise or lack of sense. The visuals are the weirdest. It's like that pre-sleep dream pattern thing but I can't get out of it. I am aware if motion happens but I can't see it. The audio auras are just like someone put a really good earmuffs over my left ear, or I have a real bad ear infection. Muffled and ringy. The body aura is exactly like a stroke. No feeling and a lack of control of the whole left side of my body, along with vertigo and nausea. It usually goes visual, left hand, left face, hearing, then full on left body. If it gets that far, I'm stuck like that for a couple days, but my vision does come back in a few hours.

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thatsalotofcats t1_j5mncwf wrote

This is so crazy to be talking about with someone else who actually gets what I’m talking about! I don’t know anyone else in real life who has these types of migraines so this is different! My ears also ring too; I have everyday ringing in my ears at all times, but the ringing gets so much worse with migraine. And your symptoms sound exactly like mine! Aura in my left eye, weakness and tingly/numb on left side up my arm and into my face. Weakness in both hands tho, because when I try to write down what time my symptoms start or whatever, my right hand feels all heavy and fuzzy. I’ve only ever lost vision on the left side tho; it’s like a hole or something, I can’t see my phone or anything it’s just a black spot for a bit.

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jimmy9800 t1_j5mor2z wrote

I'm thoroughly enjoying this! I've never met anyone with this before either! It's bizarre. It's like describing to someone how it feels to have your brain, fully conscious, slowly disconnect itself from all its inputs and then slowly figure itself out again. I get that black hole too! Although I'd describe it as more of a missing section of vision. I wouldn't know what color it is. I can't tell. It's like my brain is just making up whatever goes there and none of it could even be remotely real. The only thing about that hole that seems to be consistent is the edges shimmer, pulse, and almost seem brighter than they should be. It's always the first thing to show up for me, and it always initially looks like that spot that shows up when you look at a bright light and then look away, but instead of fading, it just grows and grows.

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thatsalotofcats t1_j5mwtrh wrote

Yep! It’s like looking at a bright light and then suddenly shutting it off and the spot is there. Also get rainbow shimmering colors that sort of go in a triangle shape. Always been scared it’ll happen when I’m driving or something but so far I’ve always been at home, so that’s good.

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