Vestibular rehab for poor balance

[drz]

I am currently doing some vestibular rehab to try improve my poor balance. The evaluation and therapy confirmed what I already knew that my balance mechanism in my inner right ear is broke along with all hearing in that ear after the GPA attacked it last spring. My balance wasn't great before due to neuropathy in feet from years of diabetes and chronic ear infections and operations on left ear that removed all of my left middle ear.

It was discouraging though to find out how impaired I actually am during therapy exercises since I have learned to compensate somewhat by avoiding things that tax my balance. I can't walk and turn my head at same time. I can't stand in place and close my eyes without falling since I am very dependent upon visual clues to remain upright.

The hope is the therapy will some help right side to either improve or help left side learn to compensate even more but so far i am feeling more dizzy and staggering more as I walk and needing to use my cane even more. I wonder how long it will be before I notice any improvement. I am also feeling a lot more tired and short of breath which might be due to recent decrease in prednsione as part of tapering plan.

Anyone else have experience with vestibular rehab therapy?

I was told that GPA usually atacks the hearing mechanism but sometimes also damages the balance part of inner ear.

[Sangye]

I went through vestibular physical therapy last year after the severe vertigo. It helped enormously, even though I still have lingering vertigo. The JHU doctor who did the therapy told me to keep up with the exercises and call if I need help. He also stressed that you should go to someone who is highly trained in vestibular PT. Many regular PT's have vestibular training as part of their general coursework, but it's not the same. The therapist I saw at JHU also had some pretty cool diagnostic equipment that helped him zero in on my vertigo issue.

I've had balance issues as a result of deconditioning and weakness. I find that walking in a pool helps a great deal, even if I don't do much. Before I started using a pool I was falling a lot and banging into doorways.

[Sangye]

The vestibular PT told me the vertigo can get worse when you start the exercises. He gave me detailed instructions about what I should expect and what requires a phone call.

One thing he told me that might be useful in your case: If I only feel the vertigo when I move my head, then it's good to do the exercises. But otherwise they will make the vertigo worse.

[pberggren1]

That is interesting about the pool Sangye. Do you have a theory as to why this might be?

The Vestibular PT that I saw once told me that the most common complaint of patients above 70 years of age to their GP is vertigo. That is all he does in this area is VPT. He travels around the whole health region.
I have some Vertigo, but it is very minor. I find it is worse with physical exertion.

[Sangye]

Basically since the pool allows you to move without fear of falling, you can simulate a normal gait and remind your nervous system what normal is. The brain is quick to learn this and you'll see results the very first time you walk in a pool. I was shocked at how much it improved my balance.

[Chris G]

Oh my DrZ that sounds aweful! As I read your post I was thinking......."vestibular rehab! I've never heard of such a thing" - I'm glad to hear Sangye has had some success with it.

My balance has been off at times too (also right ear), but not nearly as bad as you describe. I hope it works for you.

[Sangye]

I had never heard of it before, either! My JHU ENT didn't suggest it, but the JHU otologist he sent me to did. I still have a lot of trouble with the vertigo but I'd be in serious trouble without that PT.

[drz]

I had never heard of it before, either! My JHU ENT didn't suggest it, but the JHU otologist he sent me to did. I still have a lot of trouble with the vertigo but I'd be in serious trouble without that PT.
Are you still doing the exercises daily? I think I am making some slight progress on a couple of them but the half hour of therapy is very exhausting even though it is not strenuous at all.

[Sangye]

I do them on and off, when the vertigo kicks up. Yeah, they are definitely exhausting in a weird way. My doc said I could do them every day if I wanted.

[drz]

I feel the vestibular rehab is helping me. My sessions have been cut back now from three times a week to twice a week. I probably still couldn't pass a walk the straight line sobriety test sober but I walk a lot straighter and stagger a lot less, even walking without a cane much of the time if distance is short and terrain flat. I can usually do the stand in corner with eyes closed for 30 seconds without falling most of the time. I feel like my boat is in much calmer waters and not rocking as much as it did before. As I improve the tasks become more challenging but I find myself doing things I never thought I would ever do again and even having bigger dreams, like maybe i might even be able to ride a bike again.

For me the vestibular rehab has been very worth while.

[pberggren1]

I am glad to see you are doing better drz.

[Sangye]

That's great, drz!! Vestibular PT made such a huge difference for me, too. Without it I would still be falling and unable to drive. It got rid of about 80% of the vertigo.

[elephant]

I wonder if the vertigo is related to Wegeners disease. Also wondering how many others get vertigo who have wegeners disease.

[Sangye]

I don't think mine was. A bunch of sangha members got vertigo in the weeks before I did, so we think it was viral labryinthitis. Even the ER docs said they had seen a lot of it at the time. Mine was much worse than anyone else's in our sangha though.

[mishb]

I have had vertigo, associated with meniere's disease, since my late 20's, therefore in my case, it wasn't brought on by WG.

I am so glad the therapy is working for you drz

[jola57]

I have a tiny tiny vertigo which shows up only when I turn my head back and fort too quickly, but it could be due to the inner ear swelling. Two of my frineds got vertigo but within 3 to 4 months of each other. fortunately the bug did not bite me. I am glad that you feel better drz.

[drz]

I wonder if the vertigo is related to Wegeners disease. Also wondering how many others get vertigo who have wegeners disease.

I believe my balance problem is related to either the damage to my right inner ear which also caused total loss of hearing in that ear, or else is side effect of some of the treatment as it was not a big problem until i was treated for GPA last year. I had minor balance problems for a long time due to neuropathy from diabetes and numerous ear surgeries and infections that caused loss of left middle ear and 90% of hearing in that ear.

My physical therapist who is doing my vestibular therapy said loss of hearing is very common with GPA disease but damage to the balance mechanism is less common but does happen. His evaluation indicated my balance mechanism on right side is broke which coincides with the loss of hearing in that ear from Wegener's disease last year. I wonder if the left ear was not affected because there was no middle ear left, along with most of mastoid, due to previous surgeries to remove infections.

[Sangye]

Only one of my ears was affected by the viral labryinthitis, even though it was severe. It's very odd.

[Chris G]

I'm so glad the rehab has worked for you DrZ. It still sort of sounds like hocus pocus, but obviously it's not. Knock on wood......if I ever have ear and balance problems return, I will surely look into it.