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Hemiplegic Migraines

I’ve joined this group to see if anyone around my same age group is going through what I am experiencing. About 3 years I was diagnosed with Hemiplegic Migraines. I’ve suffered from Severe migraines for the past 40 years. I learned to Iive with migraine Headaches but adding paralysis to my entire right side, slurred speech, unable to process what people are saying to you, walk, work, drive (scary thought but been there more times than I would like to admit), life reduced to laying in bed all day and night, the worse migraine headaches that follows once it’s starts to subside. Then, it start all over again. I keep reading that it’s more common to get this while younger and it tends to get better when you get older. Well, what if you get it at our age? Does this mean you’ll have it the rest of your life. Is there anyone that can relate and give me some hopeful news that there Is a rainbow 🌈 at the end of this storm? Thanks for allowing me to vent and reach out to people who can empathize with our situation. I’m not looking for sorry, I’m lookkng to hear your story and how you cope and manage your life with a disability that most people who don’t have it, act as if we can control it and suck it up. I was raised to be strong, not complain and grateful for what I have and have worked hard to get where I am in my life. I know that things can be worse and I’ve learned not take for granted any minute in a day. Thankful and blessed to have a loving family and friends in my life. I can’t imagine living with this and being alone! The love and support you receive makes you that much stronger and knowing that you are not in this fight alone. Thanks to all who have been there for me😘

  1. Hi lizlasvegas702,

    Welcome to the Migraine.com discussion forum - we're glad you've found us.

    Hemiplegic migraine (HM) is a rare form of migraine disease that typically begins in childhood, but not always. One of the hallmark symptoms include true motor weakness. When you get a minute take a look at these articles on HM; https://migraine.com/?s=hemiplegic+migraine&submit=Go.

    I don't have hemiplegic migraine but hopefully others will be along shortly to share their experiences with you. I do know when we have a rare form of migraine disease, it's best to be treated by a true migraine/headache expert rather than a general neurologist. A true migraine/headache expert is board certified in headache medicine, which is different than being certified in neurology. Take a look at these articles that detail how these expert doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I hope this helps!
    Nancy

    1. Hi - I've been living with Hemiplegic Migraine for some years now. I got a definitive diagnosis in the early 2000's and after much experimentation with medications, found that Depakote works as a preventative for me. My doctor is not sure why, but it keeps me from having the episodes that result in paralysis. I've been asking myself if I will have to/need to take this medication for the rest of my life. I'm 67 now. I first got hit with HM when I was 32. Most of my symptoms have been stroke-like and I've been in the hospital multiple times. And did actually have a stroke in 2001. I'm now through menopause and am wondering if that plus aging means my HM will get better or less? I'm wanting to go off Depakote but can't find research about what would happen, or the effects of menopause on HM. I do realize that maybe I'm in the first generation of people to live through HM and that maybe there are no answers. Frankly I want to go off the medication because Depakote packs on weight and it's impossible to lose weight while on it. I could be just vain. But there is the increased risk of actual stroke if I go off Depakote and have full-blown episodes again. Sigh. Wish I had answers.

      However, I wish I could offer you a rainbow. I wish for you strength and patience.

      1. Hi LindaCSmith,

        Thank you so much for sharing your story with us - we're glad you've found us!!

        Hemiplegic migraine is a rare form of migraine disease. I'm happy to hear you've been managing it so well over the years, and understand your desire to not be on medications forever. I don't think any of use count on that!

        It's not yet clear what impact menopause has on hemiplegic migraine attacks. Dr. Susan Hutchinson has written a detailed article about migraine attacks and menopause which includes information on hemiplegic migraine attack you can read about here; https://migraine.com/living-with-migraine/hemiplegic-migraine-menopause/.

        Have you had an opportunity to discuss coming off the medication to see what would happen? If not, that would be the first thing I would suggest and go from there.

        Please let me know what you think
        Nancy

        1. Nancy,
          Thank you for the article reference, I did read it. Also I did quite a bit of extra research. And I have to admit that I have been reminded how very blessed I am to have Depakote as a preventative. There isn't any solid medical evidence about why it works, but for some people it works to control or prevent seizures - and for me it works to prevent paralyzing episodes.

          I hadn't remembered how truly awful and disruptive my episodes were before going on it. Truth is, I'm just tired of the weight [Depakote puts on weight]. However, now that I have really thought it through, weight gain [and the inability to lose that weight] is a small price to pay. Not being at risk for sudden, 'out of the blue' episodes that would paralyze half my body for sometimes as long as a few weeks means that I can drive; I can take care of my home and family; I have independence I didn't have before the medication.

          Oh, I still have other symptoms and I've been living with them so long they are "normal" to me now. I still have occasional difficulties swallowing; I'll still have speech impairment; I'll still occasionally get severe headaches during the night; I'll still occasionally have tremors in my arms; sometimes my right eyelid droops; and of course there is the occasional awful fatigue...those of us living with hemiplegic migraine live with a host of "annoyances." I've come to realize that experimenting with going off Depakote isn't a responsible thing to do.

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