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Share Your Personal Experience with Hemiplegic Migraine Here

What has your journey & experience been like with Hemiplegic Migraine? What does it look & feel like during an attack?

Have you found ways to effectively cope?

Help let others they are NOT alone in this by sharing your experience here.

  1. 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.

    1. 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.

      1. 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

        1. 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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