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Hemiplegic migraines

I Am a 43yr old that was diagnosed with Hemiplegic migraine in 2016 but have been going there this since 2013 when I thought I had a Tia. I have a least one episode a month. And my doctor said there is nothing she can do to help me because I am allergic to the medication that they can give me. I also know that there is all of people that are not educated on this. I wish people would stop thinking I’m am faking it. This is very real. All I wish is to find other people that go threw this..

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  • EvilFluorescents
    2 years ago

    Hi, Billiejo~

    In addition to classic migraines with aura, I also am lucky enough to get to experience what you’re talking about– sporadic hemiplegic migraines. The first one absolutely freaked me out. I thought I was having a stroke, not just a TIA. The left side of my body was almost completely paralyzed; my upper body was more affected than my lower body. I didn’t have the strength to lift a tea cup. Additionally, my speech was slurred, and when the paramedics arrived, I knew what I wanted to tell them, I knew the correct answers to the questions that they were asking me. I understood them completely, but the left side of my mouth wouldn’t work. It was like I was talking with a mouthful of peanut butter. It was one of the most frustrating things that I’d ever experienced. I can certainly empathize with you when you say that a lot of people aren’t knowledgeable about hemiplegic migraines– the paramedics weren’t, and neither were the Emergency Department physicians!

    I don’t know your living situation, but if you’re not residing by yourself, my best recommendation is to have somebody video you with their cell phone, while you’re suffering a hemiplegic migraine. And be sure and try to talk, and move the side of your body that’s most affected, so that the physician will be able to see exactly what you are having to deal with. Isn’t the old saying’s that “A picture is worth a 1,000 words”? Well, then, a video is worth at least a 1,000,000.

    If you are living by yourself, it may be more difficult. I know that I get a more bizarre prodromal sensation than I do for a classic migraine with aura. Perhaps you could talk with a neighbor prior to the event happening, and then call the neighbor to come and video you when you think you’re going to have your next one. Video evidence goes a long ways towards convincing the most stubborn physicians that an actual problem exists, that it requires treatment, and that you’re NOT faking it.

    And Donna’s correct– take that video with you till you find a doctor that has answers, because trust me, some of them do!! Be persistent. We’re our own best advocates!

    Best of luck,

  • DonnaFA moderator
    2 years ago

    Hi billiejo,

    I’m sorry to hear that your doctor has more or less thrown up her hands. We do have some resources that may help you connect with a headache specialist that can help you feel heard. Please check out:

    Is it time for a new migraine doctor
    Looking for a migraine specialist
    How to really find a migraine specialist
    Finding a board certified headache specialist
    Hiring the right doctor

    I hope that you find something that helps you! Thanks for being part of the community , we’re glad you’re here! -Warmly, Donna ( team)

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