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50 Years & Older Living With Migraine

Hemiplegic Migraines

  • By lizlasvegas702

    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😘

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  • By Nancy Harris Bonk Moderator

    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

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  • By LindaCSmith

    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.

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  • By Nancy Harris Bonk Moderator

    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

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  • By LindaCSmith

    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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  • By Nancy Harris Bonk Moderator

    HI LindaCSmith,

    I hear you on the weight gain with Depakote. Thankfully I wasn’t on it for very long!

    It’s amazing to me what we can adapt to. My entire life is different now and I’ve learned to adapt to it.

    Nancy

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  • By Deb17

    Hi Iam a 54 year old diagnosed with hemiplegic migraines about 2years ago, I also get all symptoms of having a stroke. Over the last 6 months I have had 2 lots of Botox injections and due to go for my next lot any time, I feel they have done no good for me apart from down my left hand side of my body doesn’t go numb, my face still drops, I am going to tell my consultant this time i do not wish to have them any more, but I am bothered that the consultant will say there is nothing we can do for you. Just wondering has anyone els had Botox injections and did they do any good.thank you

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  • By Nancy Harris Bonk Moderator

    HI Deb17,

    Thank you for sharing your story with us. I did want to mention it can take three rounds of Botox before we see a noticeable difference in our attack frequency and severity. Maybe give it one more round.

    If the doctor/consultant is saying there is nothing more he can do for you, it’s time to find another doctor and hopefully an expert who treat migraine and headache disorders. Here in the U.S. we have doctors who are board certified in headache medicine, which is different than being certified in neurology. I’m not sure what country you are from, but hope you can investigate one of these expert doctors.
    Nancy

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  • By Deb17

    Thankyou for your reply, I am going to see what the consultant thinks about another lot of Botox, not really happy about another lot but will see. I live in England .

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  • By Douglas

    Lisa, I am with you on the “what if” comment. Following a stroke at 41 I was (eventually) diagnosed with familial hemiplegic migraines. The diagnoses took some time since I was also having a series of TIAs (“mini-strokes”). We discovered that almost my entire extended family on my mother’s side suffers from migraines, usually just lights and sometimes ringing in the ears, but some would suffer more severe symptoms. There are several of us that have hemiplegic symptoms, three of us without pain, one aunt that does have pain with hers. Making matters more interesting we all present in the same order, in the reverse of what a “normal” hemiplegic migraine presents.

    The continual onslaught of attacks has caused me to stop driving (or have one of my providers pull my license), consult with a labor lawyer to begin documentation for disability, miss work and social events, and generally made my life far more difficult than it ought to be. Of all of the effects, the worst is worrying if the current episode is a stroke or migraine. My providers think that the stroke changed my attacks from so mild we never realized they were hemiplegic migraines (I did occasionally suffer migraine attacks when in my 20s and 30s, but never realized that the loss of functionality was due to hemiplegia and not the pain) all the way to having my entire body paralyzed and my ability to think almost completely gone.

    If you have a preventative or abortive that works, keep on them (but never be afraid to ask about other treatments). I have a regime that keeps the worst of the symptoms at bay, a combination of Botox injections every 3 months and a cocktail of other meds. My migraine specialists (a neurologist and a DO that are both migraine specialists) and cardiologist shifted me from a beta-blocker to a calcium channel blocker — a move that has been very helpful.

    I still have symptoms daily, but they are usually short live and/or very mild (not having a significant effect on my ability to perform tasks). My attack days dropped down to < 1 day in 3 for a while. The current mix has also held me down to one incident of full paralysis in the last 2 years. So, there might be a light at the end of the tunnel.

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  • By Brody

    I haven’t been formerly, sorry I can’t spell at the moment, I am kind of in the middle of one now, diagnosed with this type, but for about 5 years have been wondering why I felt drunk all the time. Some of the time. I had a stroke like symptom many years ago and was diagnosed with a migraine, but had a very slight… second long headache then. I am developing more actual head pain as time goes on. I actually thought i was being drugged until i came across this type of migraine. I dont know if im relieved or angry. Ive only now am beginning to accept it. I’ve been trying to figure it all out. Glad it has a name, but angry because I feel it’s hard to make people at work understand and for me to feel at work like I’m still part of the team. I used to call off a lot, now I struggle to work through the episodes which is taking it’s toll on me to be honest. I cry and try to talk myself in and out of quitting almost everyday. I have friends with migraine pain, but not all of these other symptoms, but they understand, I think. My nearest relative is 90 miles away. So I take of it all myself, but it all good. I had to quit taking care of my Mother with dementia 4 years ago, because I couldn’t take of both of us, because of this disease, not knowing at the time what I had. Well that’s kind of my story. So I see by this forum I’m not alone with this, which surprised me.

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  • By Nancy Harris Bonk Moderator

    Hi Brody,

    Welcome to the Migraine.com discussion forum!! Thank you for sharing your story with us – you’re definitely not alone!

    Hemiplegic migraine (HM) is a rare form of migraine disease you can read more about here; https://migraine.com/migraine-types/familial-hemiplegic-migraine/. Some symptoms of HM can be scary, I’m sorry you experience them. HM is best treated by a doctor who is an expert in migraine disease and headache disorders. These expert doctors are different from neurologists in that they are board certified in headache medicine, which is different than being certified in neurology. These articles have more information on how these 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 understand how difficult it is to take care of someone with dementia. We recently moved my dad into a memory care unit and to be honest, it was a very difficult decision.

    Please keep us posted on how you are feeling, and let me know if I can do anything for you!!

    Nancy
    Nancy

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