Sunday, July 31, 2011

Has physical therapy ever helped your meniere’s disease?

There are definitely some medications that have helped me out and there are some that didn’t help at all. There are also a lot of folks that credit the gent injections with helping them with their dizziness. Unfortunately I’m not in that group (along with others) as I have said on more than one occasion some things work with meniere’s and some things don’t. One thing that I thought might have helped but didn’t was vestibular therapy. At first I thought it was a success then I started to have the attacks again. It has been a while since I had it but looking back it really didn’t help much. In fact the therapist even told me that most of her dizzy patients had vertigo not Meniere’s disease.
I guess the reason that I am thinking about it now was a conversation that I had with a doctor this year. I told him about my previous experience with therapy and he certainly understood the frustration I had with it. But then he brought up the subject of the laby operation, where the inner ear is gone and that might be something that I should consider. I told him that I had heard a lot of folks had terrible balance problems after the operation. He then said that the therapy would help with that. I can’t imagine that I will ever have any type of surgery like that especially if I have to rely on therapy.
Let me know if physical therapy has helped anyone.
Thanks
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10 comments:

  1. Hi David, its been a while since I last wrote on here, so just thought Id give you an update. No vertigo for 6 months now, but still have off days where I just feel dizzy. In the last week or so I haven't been taking my vitamins properly (l-lysine and multivitamin) and today Im struggling with the tinnitus. I can feel myself getting depressed again (already!) which of course won't help matters. My tinnitus does tend to fluctuate though so maybe it will settle again soon. Anyway, just read your post and just thought I'd mention an app I have for the iphone. I got it a while ago when I was having severe problems, its called VertiGo and it has three levels of exercises to do. I found it quite useful (even though I didn't do it everyday as you should) and as its cheap to buy, I think its worth a shot for those with problems.

    Another thing for you, take a look at this article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074736/?tool=pubmed

    it cheered me up today, and I think its important to not loose hope with this horrible disease. Hope your doing ok.

    Becky

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  2. DAVID~
    P.T. did not help me.
    I had one Vestib. PT visit, and the excercises she had me do were nothing I wasn't already pretty much doing at home.
    She also made a comment to me (I listed in another post) that she felt that "Menieres vertigo could-not be brought on by visual or physical motion", which is absolute nonsense, as we who have it know. How are we supposed to trust and work with someone who clearly has no clue what we are trying to deal with, or how many things can set it off?
    I actually felt worse both mentally & physically after the visit, and very off balance clear into the next day from the balance testing.
    I won't go back. Waste of time and money.
    I will keep pushing my balance to be better on my own.
    But don't we all do that anyway? Just trying to get through a dizzy day and stay upright is a balance workout.
    I have noticed that when I have a series of cluster attacks, it worsens my balance in between considerably, and it takes me awhile after to re-strengthen.
    I'm also very afraid of falling then, so I'm sure I am guarding in my balance and posture which doesn't help.
    I feel that PT probably could help people recover from balance issues other than active Menieres...Menieres is just a different animal.

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  3. Hi David! I finished my second vestibular rehab appointment just this past Friday.

    I have a new doctor, primary care this time, as the otologist I have been seeing was a disappointment. He constantly checked my hearing, tried diuretics, and suggested surgery (labby) which I'm not willing to do without turning over every rock first.

    My new doctor was aghast at the suggestion of surgery without ruling out other things first. He checked my blood and found low vitamin D so I'm taking high doses of that, too soon to tell if that will help. And he suggested we try vestibular rehab.

    By contrast to Lauri's experience above, my therapist seemed to understand everything I was saying, dismissing nothing. I nearly cried, honestly, at the first appointment. Just to have someone understand was huge for me. After about 45 minutes of testing, which I passed with flying colors, we started the only test that invoked a reaction. In this test she shook my head while I tried to read an eye chart. My vision with my glasses is very good, I can read down to the second-to-last row but when she is shaking my head it goes up seven rows. Normally it's one or two for non-dizzy people. That brought on disequalibrium for an hour. I was prepared for this on the second appointment but it didn't happen.

    After all this, I was told that, and I paraphrase, my balance is fine, until it isn't when I'm having an attack and sometimes for a day or so afterward. We made it sort of a little joke because it's so true and so obvious. The other thing she said was that she didn't see where coming to the appointments (which are not convenient, a 45 minute drive in any direction, no fun after disequalibrium has been induced) was going to accomplish anything that I couldn't do at home. I was given a homework assignment and another appointment in a few weeks. Essentially, I have a large letter written on a post-it that is set at eye level. I'm to shake my head from side to side while focusing on the letter for 60 seconds, progressing from sitting to standing. It is to retrain my eyes to keep up with my head movements. It might not work but then again it might.

    All this is to say that I don't know yet if VR is going to work for me or not but it feels empowering to be on a path of discovery and not just on my way to the surgeon's office.

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  4. I don't feel that VRT did a thing for me. When I tried it following the gentamicin treatments, I felt great for a couple of weeks, then started to lose ground.

    The vestibular nerve was healing itself, and my vertigo was coming back. The physical therapist at first said it was impossible when I told him I was having vertigo again. I went back to my ENT and got tested, and she confirmed that it was true. I stopped VRT and went back for more gentamicin shots.

    This proved fairly unproductive, so we decided to go for the labyrinthectomy surgery. Following that, I've had chronic dizziness, and recently some attacks of mild vertigo. Although another doctor suggested I go back to VRT, I don't have any confidence that it will help at all.

    Like Lauri, I find that the physical therapy exercises are pretty much the same things I'm doing at home, and I also use the exercise BigDaddyThinks mentioned above. I don't feel like I'm getting anywhere.

    Treatments affect different Meniere's patients in different ways, so I'm not sure it won't help anyone... but VRT has not been helpful for me. Fortunately, my insurance covered it, but I doubt I will feel moved to go back.

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  5. Hopefully VRT helps some folks. I have also tried the exercises at home and to no avail. I am also afraid of falling while doing them

    @Becky,
    that is interesting about the app for vertigo!

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  6. Hi David~
    Maybe it's just my computer, but nothing is showing up for me under the "top comments" section when I log onto the blog. ??

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  7. Hi Lauri,
    I think that it is a glitch on Googles side.
    David

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  8. When my physical therapist gave me exercises to do at home, he stressed that I should do them with my back to a wall and two kitchen chairs on either side of me, so it would be really, really difficult for me to fall. Of course, I didn't quite do that, but the option is there if you are worried about it.

    Lauri/David, I'm having the same problem with the "top comments," and I miss them.

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  9. Sorry everybody but for some reason it is down right now (hopefully not for long)
    David

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  10. It came back, but then it went down again. Strange that this part of the blogs should be "buggy." Oh, well.

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