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Old 12-06-2014, 09:25 PM   #16
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Re: Suggestions would help

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Originally Posted by lovineachday View Post
I had VN 2 1/2 years ago and yes, I had that experience. Sometimes I wondered if riding in a car actually made me feel somewhat better! Temporarily. Especially longer drives. I'd get out and feel awful.

It can be a long slow road but it does go away. Hang in there!!
Hi Lovineachday,
I wrote to you a while back. I was dx'd with probably VN in May 2012 and thought I was getting better in summer 2013 but had a set back and since Sept 2013 have been having problems, dizziness, feeling faint, light-headed and derealization/where I feel like I'm in a dream. I've been seeing a neuro otologist but he just wants to up my Klonopin and I do not want to do that because of it being a benzo. So I'm having an appt on Dec. 15 with a doctor at UPMC in Pittsburgh balance center. I have to go through testing again and am nervous about the caloric test. I'm hoping it goes quickly and I'll be ok and back to my "normal" shortly after.
May I ask how long it took you to recover from this? Do you know how long it took "Manybikes" to recover? What was your caloric testing results? Any unilateral loss?
Thank you and hope you're still feeling better.
Nicole

 
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Old 12-07-2014, 06:58 AM   #17
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Re: Suggestions would help

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Originally Posted by js693 View Post
hi guys, new to the board, not new to VN.....i've had it now for 11 months and it has been a roller coaster ride to say the least......the hardest part is managing the vestibular migraines that pop up and sap you of your energy as well as make you feel like dog dirt....i found that removing caffeine and alcohol, staying well hydrated, getting reasonable sleep (too much is no good for me), being vigilant with VRT, and limiting strenuous activity has helped considerably......once i step to the dark side, look out........i tried ssri's as well as other drugs with not so good results.....the benzos worked fine, but the rebound effects are just not worth it in the long run.....good luck and nice to see that i am not in this alone........john
Good to see you are recovering well.

It's been exactly 2 years, I reached the new normal which is very close to the old 'normal' balance. Recovery took time, but I got out of that morass eventually. It is a very hard fight, and I can tell you you'll win as you are hanging in there.

Did the VRT exercises you do include the horizontal pendulum-like movement of the head (that really made a difference in my case)?

 
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Old 12-07-2014, 11:41 AM   #18
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Re: Suggestions would help

Did you find that towards the end of recovery you were your "old self" for a day or two, then back to your "new self"? How did that work?
I am just wondering, as I have had VN for about 10 months, and last week I felt completely like my "old self" for one day- clear mind, emotionally happy... My concern is more the cognitive (brain fog etc), but I presume the balance and brain go together....

Since that day, I have been back to the "new self"....

I am trying to walk around with my eyes closed a little each day, as I think that I have become reliant on my sight...

Great to hear you have recovered

Last edited by Shari R; 12-07-2014 at 11:48 AM.

 
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Old 12-08-2014, 09:43 AM   #19
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Re: Suggestions would help

Quote:
Originally Posted by Shari R View Post
Did you find that towards the end of recovery you were your "old self" for a day or two, then back to your "new self"? How did that work?
I am just wondering, as I have had VN for about 10 months, and last week I felt completely like my "old self" for one day- clear mind, emotionally happy... My concern is more the cognitive (brain fog etc), but I presume the balance and brain go together....

Since that day, I have been back to the "new self"....

I am trying to walk around with my eyes closed a little each day, as I think that I have become reliant on my sight...

Great to hear you have recovered
Yes, there was a bit of going back and forth. Four or five days of the real normal, and then one day the slight relapse. I think the way I countered it was to do those VRT exercises in a environment where my eyes would NOT help me balance. Like in the shower stall, for example, where it was all one light color without any frame of reference. I used to stick a post-it note with a `X`marked on it as the only target reference point for the VRTs.

For what it's worth, my neuro-otologist who helped me get better and who is regarded as one of the leading experts in the world, said that my brain had transferred most of the balance functions from the ear to the eye: and that was exactly the problem. The aim was, in my case, not to balance wholly with the eyes, but to have the ear/ears do their bit again.

Hang in there, do the VRTs and you will recover in a few months. You are doing great as it is!

Last edited by Gautamm62; 12-08-2014 at 09:52 AM.

 
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