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Hemiplegic Migraine (Any advice of just any moral support)

Posted , 3 users are following.

erica1994
erica1994

Hi all,

This is my first time posting on the site but i've been reading posts from other users for a while. I'm just looking for some advice or just moral support from other sufferers (is it bad it's comforting knowing that other people are going through this too?) 

I have had migraines since I was younger (trigger by certain scents or light, intense headache then I would puke and feel better) I was first diagnosed with "complex migraine" when I was 16 (complete numbness and paralysis on my left side, slurred speech, vision trouble) at first my doctor thought was a stoke before sending me to children's hospital boston for a CT scan. I was prescribed maxalt and informed to try to take it before the actual migraine during the aura phase. It didn't really work out for me as I had no idea what the hell my aura was. I didn't get any of the  common aura signs that the doctor had mentioned. A few years ago I started seeing anothe neurologist who said I had Hemiplegic Migranes and I actually shouldn't be taking Maxalt due to a high risk of stroke. He suggested stop taking birth control which i did. I haven't had been back to the neurologist and hasn't had a migraine in two years until yesterday while I was driving to work.

Same symptoms as normal, complete numbness in my left side, intense pain on the right side of my head, unable to speak and vision loss. Absolutely scared the crap out of me since it's been so long and I have never experienced it while driving.

I guess my questions for everyone else is: 1. How do you notice your Auras? I felt really tired and brain foggy the day before but have also been working like a crazy person so I'm just not sure how to tell why can be a warning or what is just my body being my body. 2. How do you find your triggers? and 3. Has anyone dealt with this kind of different beliefs in doctors? It seems like no one really has any 100% answers and a lot of the info on hemiplegic migraines seem to be speculation. 

I'm kicking myself for not taking it more seriously when I was younger but really want to try to manage it now as it is way worse then I remember. 

Sorry for ranting and raving and thank you in advance for anyone who reads through this and comments. Even just hearing how others manage would be a great help. Also if anyone is located in the Boston area and has any recommendations for a neurologist who seems to specialize in Hemiplegic Migraines feel free to send the info my way.

Thank you again!

1 like, 3 replies

3 Replies

  • erica1994
    erica1994

    Posted

    Sorry for the typos - still recovering today 😞

  • kath1955
    kath1955 erica1994

    Posted

    Hi Erica, first are you in Boston US or UK? I'm in the UK. Secondly, I don't get Hemiplegic migraines or haven't been diagnosed with them but I've have suffered for over 40 years. I used to get them with an aura which was flashing zigzag lines in one eye and then 20 minutes later I would get the pain over the opposite eye. If I took paracetamol when I got the aura the pain would be bearable and fortunately I only got them 2/3 times a year.

    Move on 20 years and they became more frequent without the aura and did not respond to over the counter meds. So since then, I have been having regular visits to my GP, neurologist and had MRI scan. I have tried nearly all the preventative meds available without much success. The last year I have been getting them nearly every other day, waking in the early hours, there does not seem to be any particular trigger, although alcohol is a definite but even avoiding that I still get them. For the last couple of weeks I have been off of the preventative that I had been on for about 3 years ( Pizotifen), and as I write this I have been without a migraine for 6 days which I haven't experienced for quite a few months. I haven't done or taken anything different.

    I really think that doctors don't really know what causes migraines and that is what makes them difficult to treat. Some people may have definite triggers but for those of us who don't doctors just keep prescribing different drugs in hope that something will work.

    I'm sorry if this is not a positive response but I'm just sharing my experience.

    Good luck and best wishes. x

  • c_10917
    c_10917 erica1994

    Posted

    I haven't been diagnosed with hemiplegic migraines but I suspect that's what I have since I have the weakness on one side and slurred speech, my auras almost always begin with visual problems, I can only see half of what I'm looking at and feel a bit drunk. This is then followed by the weakness tingling and numbness and then the headache and vomiting starts about 20/30 minutes later. They're so horrible aren't they sad had one so bad a few weeks back I went unconscious. Hope you find a way to manage them and find more information on them! 

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