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Hemiplegic Migraine

Share Your Personal Experience with Hemiplegic Migraine Here

  • By Akalie

    That would take too long.. 42 years dealing with it. In this days I was a kid and there was no medicine.
    Thank goodness for the triptans and before that Indocid. At least the pain has become mostly manageable. With once in a while the help of extra injections or an iv in the Er room.
    I don’t know. It’s a life battle. I’m fortunate to be able to organise my life around it. There is no fighting it. It just makes things worse. I accept the ride and I tell people I’ll see them on the other side when it starts. It can take from 2 to 7 days.
    Then it takes a week to recover from all the medicine and the exhaustion of pain. I’m still grateful it’s not a lethal disease as long as I stay away from the window.. could be worse in that sense. I may try Aimovig in a couple of years when there’s enough feedback.

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  • By SalieGG

    I’ve been having migraines since I was 3-4 years old, I’m 28 now. I’m on prescribed medication but sometimes more often than not, they don’t work. My family has them too, my grandma has chronic migraines, my mom had hormonal triggered migraines, mine are a bit of both. My grandma says that hers start as flashes of lights, or colored dots in space. My moms says that she gets blurred peripheral or tunneled vision before hers start. Mine change. I can see flashes and then full blown migraines, or I can start with pressure behind my eyes, usually the left eye. I can feel a poker jabbing in through my skull and the the fully blown migraine, sometimes the pain just wakes me up from sleep. Basically anything and everything can cause me a migraine, from loud sounds, to bright colors or lights, if it’s too hot, if I don’t eat.

    I get extremely sensitive to lights, colors, sounds and temperature; I sometimes can tell when I’m going to start one, but for the most part they just happen out of nowhere. I usually have to stay in my room, which has been modified to a sensory deprivation chamber. I have extra insulation, and padding on more surfaces just to keep things from echoing or allowing sound in, I have 2 layers of blackout curtains in my room just to keep light from coming in. Usually with the migraines, I can’t keep medication, food or water down, it all comes back up. I have to get shots in order to keep them away or for making them go away.

    I’ve had migraines that have blinded me for 2 days, I’ve had people tell me that I look like I’m having a stroke because half of my face has gone numb. They leave me weak, to the point that when it’s finally gone, my body is exhausted, and I’m left barely able to move and my brain stays in a fog.

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  • By kelser

    Good morning I need some advise and not to sure but has anyone successfully claimed p.i.p due to HM as I have been advise to cut my hours due to my HM and stress of young children but can’t afford to!! I get these HM around four times per week
    Many thanks xxx

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  • By Annette DeLaney

    My first hemiplegic migraine was about 8 years ago. I was at work making the rounds of the registers collecting the days’ money, and had 1 person with me to deter folks from stopping us. Thank God for her too! I started to feel a sensation of looking through a tunnel, and she said “you don’t look good..are you alright?” I tried to answer, but what came out was garbled nonsense, that to me sounded perfectly normal. The left side of my face droopped, and I felt very weak. An ambulance ride & a million tests later the med team diagnosed hemiplegic complex migraine. Turns out gram had them, 2 aunts, 2 cousins, and 6 children of cousins too.

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  • By AlexandriaSZ

    I’ve had migraine for as long as I can remember (age 3) and was first diagnosed at age 5. When I was 9, a doctor realized that I was having seizures during migraine attacks. Virtually all the women in my family have migraine, including both maternal great-grandparents, maternal great-aunts and aunts, and my siblings.

    I have migraine without aura, migraine with aura, and hemiplegic migraine. I wasn’t diagnosed with hemiplegic migraine till in my late 30s when my GP, who had migraine and who was current on all the research, diagnosed it.

    Of all the migraine attacks I have, hemiplegic migraine is the most painful. In fact, now that pain medicines are so restricted, I only use opioids for the HMs, not for any of the others. The HM also have the most neurological symptoms, including smelling, tasting, and hearing things that aren’t there; numbness in my L face, hand, and foot; dysphasia and aphasia, which makes it challenging for me to speak and be understood, if I am able to speak at all; and a complete inability to understand spoken language, which makes people think I’m not paying attention or that I can’t hear them.

    Several years ago, my doctor recommended that I begin wearing a medical ID for HM with the “seizures and aphasia” listed since, during the visit, I was experiencing an aura and the Dr said my speech was slurred: I can’t hear that, nor can I hear when my words come out all jumbled (it all sounds normal to me, but sometimes my guy says, “What did you just say? Did you mean…”).

    When I was younger and didn’t realize that all my strangest symptoms were related to the HM, I thought I was going crazy when I smelled things burning or heard radio talk shows when no radio was around. This was long before the Internet, and so this information about aura symptoms was not available. Getting diagnosed with HM in my 30s was a great relief.

    I’ve had migraines for all my life, as far as I can determine, and was diagnosed with migraine almost 60 years ago.

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  • By GwynGreen

    Hello, not officially diagnosed with HM, my daughter was. Doctor actually asked her which one of her parents had them. Have had chronic migraines for over 26 years. When mine started there were Classic or Common. Depression was really big at the time.
    I had a stroke in 2009. Felt like a migraine, rolled over went back to sleep. No feeling in my left hand when I woke up. Wedge shaped section of dead brain tissue. I qualify as a Zombie! We use humour to cope.
    Fun fun, I react horribly to the triptans, ergotamine and DHE 45. My go to pain relief is my room, nick named The Crypt, cold pack and Advil Liquid Gels. My doctor stopped giving me Oxycocet when I asked for a dosage increase. The 5mgs weren’t enough.
    I take 1200mgs of Gabapentin with 60mgs Paxil. Lil bit of PTSD & Anxiety in there too.

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