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Just want to know someone who has what I have.

I was diagnosed with hemiplegic migraines. Well not technically, I went to the er with stroke symptoms. Went through a battery of tests and got diagnosed with migraines but hemiplegia was never on paper. Two years ago I had an actual stroke and was administered tpa in the ambulance. I have since been recovering slowly. Does anyone else have a similar story? I’ve lost my sense of taste and smell (not covid related) and I still have hemiplegic migraines. I’m scared of having another stroke.

  1. Thank you for sharing your difficult experience with us. Stroke like symptoms can be very alarming. Good to hear you are recovering, and I hope you continue to recover.
    Migraine with aura can have some alarming symptoms too that include numbness, tingling, and more and can sometimes get confused with hemiplegic migraine. The thing is hemiplegic migraine is it's very rare. We have information on this here;
    It may not be a bad idea to seek out help from a doctor who is a true expert in treating migraine and headache disease. General neurologists may be fine doctors but have a hard time being experts in one area because they treat so many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. Many general neurologists who treat people with migraine and headache disease claim to be experts but that may not be 100% accurate. A true migraine/headache disease expert is board certified in headache medicine not all neurologists have, and treats migraine and headache all day, every day. Here is more information on why these doctors are beneficial and where to find them;

    I'm looking forward to hearing your thoughts and sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator Team Member

    1. - I do not have hemiplegic migraines or had a stroke but wanted to lend my support. You've believed these migraines are hemiplegic. But getting an official diagnosis can truly get to the source of treatment and better wellness. As Nancy offers, I do hope you look into some sources she's presented.

      Your experience underlines the importance of thorough medical evaluation and ongoing management for both conditions. Andm, it's understandable to feel scared about the possibility of another stroke, especially given your history. Anxiety about future health events is common among those who've gone through it.

      Loss of taste and smell is also concerning. These symptoms can significantly impact daily life. Have you explored any coping strategies and potential treatments with your healthcare team to find relief?

      Throughout all of this, it's important to have ongoing support, monitoring, and collaborative help with professionals to navigate the complex nature of your health conditions, as well as address your fears and concerns. You're not alone in facing these challenges. Reaching out for support and connection can be incredibly helpful. Warmly - Rebecca (team member)

      1. I started getting hemiplegic migraines last year. Numbness, tingling, twitching. Really scary. First time it happened I honestly almost went to the ER because I thought I was having a stroke. The twitching was the scary part. Completely uncontrollable. And I was really out of it, even more than usual, total brain fog. And I got a fever. I rarely ever get a fever, even if I'm sick. I've since had a couple more of them. They are the worst of my migraines, usually.

        1. wow that must have been such a scary experience. It's so unsettling when you're experiencing symptoms that are out of the norm. I don't blame you for considering the ER in that moment. I think with symptoms like that, it's always better to be safe than sorry. I'm glad to hear that you have a better understanding of them now so you know what's going on when it happens. I hope that they are few and far between though.
          Alene, Team Member

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