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@joyces Hi Joyce, I've been meaning to write you ever since you described in long, wonderful detail all that you went through to master your balance issues. First I should say, I have you to thank for getting myself to VRT. After reading what you had to say, I called my internist and asked her to write me a prescription and then I found a VRT - so I consider myself not really doctor-referred to VRT but self referred - or I could say, "Joyce-referred"! (:-) )! So my note here is a response to that and my own experience with doing VRT, which is notably different from yours. I have been going, on average 2/week for my VRT! I have been religious about doing the exercises my VRT has prescribed which are geared to developing muscles in the hip area (and perhaps more, I'm not sure). So I do clamshells, hydrants, leg lifts for 1/2 hour every day. The kind of exercises you mention I do with my VRT. They are very challenging for me. My head gets tired - and maybe a little dizzy doing them. (I hope that makes some sense to you.) After weeks of seemingly no progress, I asked my VRT about his expectations. Bottom line: (if I understood correctly, he doesn't expect noticeable improvement but rather sees the exercises as preventative of further balance issues! At this point I have had 60 sessions with him and until last week, I was aware of no sign of improvement at all when walking about town (big city). Also, when I asked him about what could be the cause of my very bad balance, in addition to a damaged balance nerve because of benign tumor removal from acoustic nerve, he simply said he couldn't know because there are so many possibilities. As for one day last week when I seemingly, suddenly, had a significantly improved experience, I am wondering whether that was a onetime thing or whether, after so much time has elapsed, there actually is improvement! The winter snow storm has made it difficult to test that out and I had to cancel my VRT app'ts since I cannot risk a fall. I wanted to believe your insistence that exercises will make a difference but until last week, had come to think that progress partially depends on the nature of the cause of the balance problem and thus your optimism could not be valid for all but now, after the one good experience, I'm in a wait and see mode, to see if what I experienced last week was not a fluke!
Replies to "@joyces Hi Joyce, I've been meaning to write you ever since you described in long, wonderful..."
Joyces and Barbb..... Thank you for your ongoing discussion of balance issues. I am still looking for a VRT. Most seem to focus on the increased strength as in the exercises you do at home Barb. I think I need to take another look and see if they do the balance exercises in the office. My balance sees to get worse every day and with that the nausea also increases. I don't eat much since food has no appeal and have lost 35 lbs in the last two years. Also have an autoimmune disease, Takahusus Arteritis. Treatment for that caused a NTM lung infection. Antibiotics for the lung infection caused the hearing loss and the balance and dizziness issues. Had to give up the antibiotics, was stable for 3 years but now the lung disease is suddenly getting worse. I have to decide if I want to do antibiotics again. I am completely dea f now so antibiotics can't affect hearing. But they can cause balance to get even worse and loss of color vision. It's a real merry-go-round and I feel like I am losing bits of myself every day. Very depressing.
That was just some background. I do some of the Vestibular Rehab exercises every day but have seen no change yet. I looked online for different exercises but all that came up was referrals to physical therapists. Does anyone know if there is a book that spells out different exercises for vesticular rehab or proprioception? Joyce, you should write one! If anyone has any ideas for me, I'd appreciate it. Thanks....Judy
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I ain't no doc or expert, but it doesn't sound as though you're learning to use your third balance system (proprioception), which is what makes all the difference. Ever since the forest fire here, I've occasionally gotten so busy providing meals for those who lost everything and are working on clearing their lots so they can move back onto their own land, that I slack off on exercises...and really pay for it! Cooking for dozens of people, sometimes over a hundred, is all new, and it's made more "interesting" because the so-called mobile kitchen has no electricity or water and is seven miles from my house, which has a totally inadequate little kitchen for this kind of serious cooking. At any rate, the exercises you specifically mentioned, like leg lifts, are not really for balance, so I'm concerned that you're not being shown how to do exercises to increase your ability to balance...without using your eyes at all.