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Vestibular migraines

Posted , 7 users are following.

linda40217
linda40217

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

What works for you?

0 likes, 19 replies

19 Replies

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  • judyan20
    judyan20 linda40217

    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!

    • linda40217
      linda40217 judyan20

      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.

    • judyan20
      judyan20 linda40217

      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.

    • linda40217
      linda40217 judyan20

      Posted

      I'm glad you've regained a few activities. I want to encourage you to keep going with exercises.

      Thank you for taking the time to respond to my post.

  • n33050
    n33050 linda40217

    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. 

     

    • linda40217
      linda40217 n33050

      Posted

      Please share everything and anything please!!

      Are you currently on meds for it?

    • n33050
      n33050 linda40217

      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....

    • n33050
      n33050

      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.

  • rocksolid
    rocksolid linda40217

    Posted

    Go to facebook. there are a few groups where people can help
    • judyan20
      judyan20 rocksolid

      Posted

      I looked at Facebook and found it depressing. No good news, no positive info, no progress in treatment. And I still do not know if I have MAV . I don't have all the symptoms. What arr other people, symptoms?

    • linda40217
      linda40217 judyan20

      Posted

      I understand what you mean with depression. I'm not sure what others experience but I know I need help.

      I wish you the best with your situation.

  • brenda99755
    brenda99755 linda40217

    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.

    • linda40217
      linda40217 brenda99755

      Posted

      Hi Brenda, yes, that'd be great. I don't always have the headaches either, but I do have weird symptoms.

      Let's keep in touch. Good luck to both of us!!

    • brenda99755
      brenda99755 linda40217

      Posted

      I see the second specialist next week and will let you know how it goes. I'm in Sussex and have to go to Kent.  If it is allowed here can you tell me where in the country you are?  Just a county nothing personal?

       

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