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CucumberDucks
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PathStep 1 Compassion hearts20 Forum posts4 Forum upvotes7 Current upvotes7 Age GroupAdult Last activeAugust, 2025 Member sinceJuly 29, 2025
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Scary Hemiplegic Migraines
Disability Support / by CucumberDucks
Last post
 July 29th, 2025
...See more I think I just need some support and kind words as well as reassurance from Hemiplegic Migraine sufferers and others. I have what doctors think are Hemiplegic Migraines. They don’t know for sure because we haven’t done any genetic testing, but it’s been taken as a confirmed diagnosis. They started a couple of years ago. I’m very scared at how they’ve been progressing but my neurologist, who doesn’t know anything about them except super basic knowledge, keeps telling me it’s typical symptoms. The ER told me the same thing when I went in today. I only go to the ER at my neurologist’s advice whenever an atypical episode happens. I’ve only had 3 atypical episodes, where I went to the ER for 1 of them (today). All 3 episodes have occurred this year. The first one happened earlier this year, which my neurologist brushed off and said not to worry even though I was paralyzed for a few minutes. The next one happened just last week and he doesn’t even know about because I tried calling but he was on vacation. But I was also paralyzed and I couldn’t breathe well. And the 3rd one happened last night. I was so scared. My body suddenly tensed up and my left side went numb. I tried lifting my head from the pillow but it kept falling back down, I couldn’t hold my head up. I couldn’t breathe well. The left side of my face was drooping and I had the worst pain on the top of my head. The episode lasted much less than 15 minutes and once symptoms resolved I was left with no residual symptoms. When I got up that night my tongue felt kinda weird so I stuck it out in front of the mirror and it drifted to the left side. With each episode I can’t breathe well and the episodes are sudden, not in usual Hemiplegic Migraine fashion. (Hemiplegic Migraines happen step-wise, where one part goes tingling/numb then the next, then the next. It shouldn’t be a sudden onset of the whole side or body). Unfortunately, the ER doctor didn’t know how Hemiplegic Migraines typically work. He kept mixing them up with regular migraines and then he told me I was “Overthinking things” and got angry when I asked a few extra questions, saying “What do you want me to do if your migraines are the same symptoms as a TIA and there’s no test for a TIA. I can give you aspirin and stuff, but that has side effects and I’ll have to send you home anyway!” I was literally just asking for more information on how to tell between a Hemiplegic migraine, TIA, and actual stroke… I just feel like no one is able to understand what’s going on entirely. Why these sudden symptoms that resolve quickly. I am worried about a TIA, but I’m young and have no risk factors according to both my neurologist and the ER doctor. But I do know that anyone can have a TIA, even those who are generally healthy. I just feel so lost and sad and helpless about the hemiplegic migraines because I have to call out of work or try to work from home when they happen. But when the scary ones happen I feel scared and today I had to call out to go to the ER. For any Hemiplegic Migraine sufferers out there, or anyone who can relate, I hope I’m just being paranoid and the doctors are right…
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