Can anyone relate? Who's been diagnosed? Anyone care to share there experience?
What works for you?
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!
Oh, yes. I can related. Omg, can I relate. lol.
I have to get ready for work, but I'll write more later tonight.
Go to facebook. there are a few groups where people can help
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.
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?
Thanks, I'm waiting for the request to be accepted.
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!!
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.
Please share everything and anything please!!
Are you currently on meds for it?
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. 
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....
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.
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.
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?
No meds now, but have had 2 lots of 3weeks on steroids and Buccal tablets and some sort of Histaine. No effect on these meds. Take care
I'm in Washington state.
Bummer
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.
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.
Hi there, I'm having a really hard time accepting the diagnosis of vestibular migraines. How are they making me feel so rubbish! Mine started a year ago with a short dizzy spell at my desk. Something told me even though it had passed that it wasn't the end. Since then I've been lightheaded, not dizzy spinning, but my whole body feels like it's about to stop and faint. I'm convinced it's my heart but after an ecg and so many ge real blood tests and a brain mri Drs are saying I have anxiety. J hate that they've diagnosed that, yes of course I'm panicking I feel like I might just collapse. I'm now on propanolol for anxiety and told that may help the migraines. All it seems to have done is slowed my heart beat and maybe had a psychological effect as I've felt more positive actually thinking I'm on the cure pills! What are you spells like and do you ever have any times where you feel 100% normal because I don't!