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simulatislacrimis OP t1_j5l3v59 wrote

Also thought I should add this:
As the title says, it’s rare. If you ever have symptoms that’s similar to a stroke, PLEASE see a doctor ASAP.

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thatsalotofcats t1_j5l612v wrote

I have this type of migraine and it sucks. Never seen a dr or gone to hospital while it was happening and after the dr didn’t seem to think it was too serious because he prescribed meds for me that can cause a stroke. Didn’t ever take them.

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simulatislacrimis OP t1_j5l99co wrote

Damn, that really sucks. I’m sorry to hear the doctor didn’t take you seriously, it’s so infuriating when the health system fails you.

My aunt recently learned she has these migraines too. Like, she’s had them for a while, just never knew what they were exactly. It sounds really scary, and I know she hasn’t had the best experiences with doctors either.

Still worth going to the doctor if you don’t know if it’s a stroke or not, but I get why you don’t wanna go when you know what it is and have experience with shitty doctors.

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rkenglish t1_j5lc9cc wrote

My sister has them, and so did my Mom. It's scary every time it happens. If you have stroke symptoms, please don't hesitate to get checked out!

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Rrawbs t1_j5lg1t5 wrote

I have these, haven’t really found out what triggers it. I was once told, “it’s more scary to those around than it is to those experiencing it”

Mine travels from the base of my skull to my forehead and you can actually feel effected parts of your body “shutting down” it basically lasts 20-40min then you sit with a massive headache. My friends joke that my brain is just resetting when it happens. They still crap themselves if they see me having one…

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lun4d0r4 t1_j5lmnpx wrote

I had my first one of these at work. It started with tingling in my left little finger, moved up my left arm and then numbness systematically moving a few mm over my face at a time (only my left side though). Then I got word salad, was seeing grey spots. I was terrified, thought I was going to die.

Work called my now husband to pick me up. He took me to a hospital where I sat for over 6hours.

After 6hours they were surprised I was still there. No one had actually told me what was going on yet. The Dr just walked past and told me "you have a migraine, this is how it presents, next time when you feel it coming on take 3 aspirin".

It's terrifying. One day I'm gonna die of a stroke all hopped up on aspirin because I'm gonna think it's a migraine.

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PDX-T-Rex t1_j5lms1k wrote

Had a friend in college have one of these. Because he was only 19, it took them more than six hours to get him in a CT to rule out stroke.

I was an EMT at the time, and as I was sitting with him in the waiting room watching him become less and less alert (he didn't know the word for "hospital" and couldn't tell me his last name), I was losing my mind. He met all the criteria in my jurisdiction for a stroke alert, but the plonked him in the waiting room.

I wanted to choke the triage nurse, especially when she said "he's 19. What are the odds he's having a stroke?" Jesus Christ, lady! They're good enough I don't want to wager his life, how bout you? Gonna see that bet and raise me your career?

Apparently so, cause he didn't even get into the scan that would rule out stroke until he was outside of the stroke protocol window.

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jimmy9800 t1_j5lmzsq wrote

I do too. If I catch it right when I notice the visual auras and go lay in the dark and quiet for a few hours, I just end up with a headache. Otherwise, my whole left side becomes useless, speaking and swallowing get next to impossible, and I'm worthless for a few days. These are great. I recognize that I'm a lucky one because I know my migrane triggers well at this point, so it's rare for me to go through a full migrane anymore.

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jimmy9800 t1_j5lnj90 wrote

I was terrified the first time I had one (8 yrs old), but yeah it makes people around me nervous if I let them get that far. Can't walk and I sound completely plastered since half my face quit working. Mine are incredibly rare now but last for days if I manage them badly.

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thatsalotofcats t1_j5lx72i wrote

Yeah me too, it’s almost like being drunk…stumbling around with strange vision in left eye and numbness/tingling on that side. I try to sleep too, and the last one I only got a mild headache after the aura left. I don’t know what my triggers are, I’ve removed all the trigger foods and have normal stress, so who knows.

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thatsalotofcats t1_j5lxp74 wrote

With covid, our healthcare system is just trashed. The drs are overworked and just don’t care anymore. Getting in to see a specialist would likely take years. Going to the ER would probably not help much because wait times are hours-days. I’d rather die at home with my family and cats than in a gross ER with strangers and drs who don’t care.

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jimmy9800 t1_j5lyyt0 wrote

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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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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pirates1997 t1_j5mq18c wrote

I must ask. Did you learn about this listening to Jeff Lewis live with Tori spelling??

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Chiefo104 t1_j5mteu8 wrote

I've had this twice. First time one side went limp, voice was messed up, and I went blind for a bit. Called 911 cause I was only 20 and they said it was a rare migraine. By far the most terrifying thing I've experienced.

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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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Ivyispoisonous t1_j5ndgr0 wrote

Please always seek help with these symptoms. I had severe migraines regularly. One was particularly bad, so I had my mother take me to the ER. Turns out, I was having a stroke at the age of 34. Luckily, I was extra cautious and sought help.

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rkenglish t1_j5zm6k3 wrote

No, they aren't classic migraines. A classic migraine features an aura, which is usually visual, nausea; heightened sensitivity to sounds, smells, and light; and pain. The hemiplegic migraine is the migraine equivalent to a grand mal seizure.

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