Scary Hemiplegic Migraines
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…
@CucumberDucks Hi there and welcome to 7 Cups, I'm Misty I lead the Disability Support community.
That certainly sounds a very scary happening. I hope that you may find some responses from others, I know how frustrating it can be to get a diagnosis, or to not get a diagnosis. Have you looked for migraine support services in your area? I know that help and support will vary according to each country. I hope that you find the help you are looking for.
Thank you for this message. I have looked around but haven’t found any support groups locally. The area I live in isn’t very big on migraines. They’re very quick to dismiss too… I am looking online for some support groups though and have come here and to another site. Hopefully I can find similar people or just people who are empathetic.
@CucumberDucks I must admit it is not a kind of migraine that I am familiar with, so I really do hope you get the help you need. Do you have a support team to help you, doctors, parents, family, friends? Do you keep a journal and keep a note of symptoms and things like potential triggers? That can all help get a proper diagnosis. Showing a doctor the record can be powerful evidence to try and pinpoint what is going on, and it's important not to rule out anything too.
Does it have similar triggers to other migraines?
No worries! It’s considered a rare migraine disorder, most people and doctors (at least in my area of the U.S.) have never heard of it before or know VERY little of it. My support system could use some help sadly. I look for doctors but as stated, the local ones just don’t know enough about it. I literally just got a call from a Director of Neurology at a big hospital in a nearby state that they’re willing to take on my case. But they’re booked until November so while I have the appointment, I am hoping there will be a cancellation soon and I can get in to see him sooner. My family doesn’t understand it, my fiancé is doing his best to be supportive as the main support, and I only have 2 friends who are very busy but try in smaller ways. It just feels like no one understands what I’m going through though. Because while one person can have a stroke, it’s not something they experience frequently. HM mimic strokes so I experience what a stroke might feel like monthly. It’s just that these newer ones feel completely different and are atypical. I keep a log of the episodes and anything I think is relevant.
@CucumberDucks I’m glad to hear that you got an appointment with a neurologist from a big hospital. I hope that the will do all of the necessary testing to get an accurate diagnosis. https://americanmigrainefoundation.org/resource-library/hemiplegic-migraine/
Thank you, I hope so too. For now I’m going to keep more detailed notes and any other migraine or headache will be noted along with the HM. Thank you for the link as well!