Vestibular migraines

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Can anyone relate? Who's been diagnosed? Anyone care to share there experience?

What works for you?

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  • Posted

    It is a vague diagnosis but I had a silent migraine sixteen months ago. Six days later I had a few seconds of double vision and lost balance. Since then I have had continual balance problems. Also my eyes seem to pull. Mostly caused by head movement to the right. My eyes seem out of synch. Gaze stability exercises and balance exercises help a lot. It gets a lot better and

    then comes back. Overall I cope better but would love to be normal again!

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    • Posted

      Thanks Judy for your reply. Vestibular disturbances suck. They come like a thief in the night lol.

      Were you put on a migraine med? I imagine I'll be doing exercises also. I cannot stand watching movement because my eyes catch and makes me dizzy.

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    • Posted

      I was prescribed amitriptyline and then propranolol. Both to prevent migraine. It doesn't stop the reoccurrences. I can now watch traffic, TV and I can read. It's more the wobbly head and legs when I get busy with cooking or shopping. The exercises and walking that really help but I can't get to point of normality.

      Hope exercises will help you.

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  • Posted

    Oh, yes. I can related. Omg, can I relate. lol. 

    I have to get ready for work, but I'll write more later tonight. 

     

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    • Posted

      Yes. I just got put on clonazepam 1-2 x a day as a vestibular suppressant two weeks ago, and I can finally work on a computer without it making me crazy and looking like a drunken sailor at work. Seriously, before the clonazepam, I was bumping into people, furniture, dropping things right and left....and the computer would trigger these awful episodes where my mind would race, I couldn't think....too much to write here. smile

      I also found out I was super low on vitamin b12, vitamin D and some other minerals. He put me on a lot of other supplements, too, like zinc, DHEA, folic acid, fish oil, coenzyme q-10, etc..

      I was going to write my entire story, but I am afraid to have my entire life's story on the internet....

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    • Posted

      P.S. He also sent me in for vestibular testing, since I failed one of the tests in his office. I think I might also have meniere's disease (I have all those symptoms, too, and poeple wiht vestibular migraines often have meniere's) but I'll wait to see what the tests show.

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  • Posted

    Go to facebook. there are a few groups where people can help
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  • Posted

    I was diagnosed a couple of years ago. It began when I found walking down steps and downward escalatores made me dizzy. It's hard to explain to people that you have this without the violent headache that is migraine. I'm going to see a second consultant next week. Tell me if you want to know how I get on.

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