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Hemiplegic migraine one part of the puzzle

Hey! I'm hoping any of you guys with more experience with HM might be able to offer some insight. These migraines were the first neurological experience I had as a young teen, with an aura including one sided numbness and tingling, a visual lightshows, and aphasia. In early adulthood I found out I had an AVM (malformed blood vessel) on my brain that caused a seizure, and had surgery to have it removed. The avm was right by the part of my brain that controls my right side and speech, so the migraines made sense. It's been a few years since my surgery, and I'm still controlling my seizures with meds. My migraines have come on-and-off, and have been rare enough and mild enough that I didn't treat them separately. But the past few years my migraines have changed a bit. Instead of just numbness and tingling in my right arm, the sensations spreads with a ton of pain too, creeping from my fingers up to my shoulder, with the tingling spreading to my face. This week I had one with horrible aphasia, but not my usual visual aura. And the confusing part is, I've read a lot of people say that hemiplegic migraines can be one of the most painful kinds of migraines, and while I've had a few excruciating ones, it's generally been somewhat manageable with Excedrin, and the worst of the headache doesn't usually last more than 3 or 4 hours. Is it typical for the attacks to vary or present like that? Or should I explore the possibilities of a seizure again? The long, slow aura seems to make it so obviously a migraine, but lately I'm worried and confused. Any insight or ideas welcome! (And yes, I'm going to speak to my neuro, but I could use help understanding my own experiences to decide what my next best step is).
Thank you!

  1. Hey there, avmgirl! We can't give medical advice here for your own safety, but one of the things I do know is that migraine can be an evolving condition. You can develop new symptoms or have others disappear, have more or less frequent attacks, or even experience different kinds of migraine. So it's possible that your experience is changing. Maybe someone else with HM can offer perspective, but your best bet would be to talk to your healthcare provider and rule out seizure-related issues. Please keep us posted! Take care. -Melissa, team

    1. Headaches and Migraines can be incredibly horrible! They can take you to your knees. I have HM and there isn’t a whole lot that will take an attack away. Absolutely nothing over the counter is even realistic to touch it. The only help I have found is through regular visits to my neurologist. I currently use Emgality injections, amytriptaline, verapamil and Fiorcet when I get an attack. A few days before I get off...not my self, then my cognitive abilities start to slide and I don’t remember things in the moment. I find my self back tracking or forget sometimes really important stuff like the pot of water I put in the stove to boil🤦‍♀️
      It increases as nausea and some spots in my vision may start. By the next day it feels like I’ve been hit with a sledge hammer and only a drilling through my head would relieve the pressure. It’s absolutely incredible. My left eye and face distorts. I can tell people notice because you get that puzzled look from colleges as they talk to you. Some of my closest co-workers will notice one coming on before even I do. I’ve been hospitalized twice with stroke symptoms. mRIs, lumber punctures and all kinds of guinnie pig test...there is no cure, just treatment and management🤷🏻‍♀️Support where ever you can get it. It’s huge and it affects every aspect including depression. Both my sisters have it too. One pretty much stays in bed and stopped living by 30. The other barely made it through high school missing so much but she is able to manage mostly now as an adult. I’ve never let myself stop, I can’t...I literally have gone to the hospital from work...if I do stop, I fear I’ll never get back going. Just keep going, get any help you can if HM is what is going on....find your support and be open with people why your off that day. Sometimes you have to make some changes for safety, I did in my career but it’s all worked out. And one more thing...I remember to thank God EVERY DAY for my blessings and ask for strength. Keep your head up!

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