Balance, Dizziness, Disequilibrium, Oscillopsia, etc.

Posted by ellene @ellene, Feb 19, 2021

I was wondering if we could have a separate thread for those of us with balance issues, disequilibrium, dizziness, oscillopsia, etc. I'm not sure if this would go under hearing loss or brain tumors, as I experience these things with bilateral vestibular schwannomas, which are grouped in brain tumors and hearing loss. I had an outstanding therapist for my disequilibrium/balance/vestibular rehab. He taught me a lot about my issues, their causes and solutions. More than any doctor has ever explained to me. Someone had some excellent information/summation about balance that might be of interest to anyone who experiences these types of issues. I was hoping that it could be repeated under a separate thread. I am going to post this request in both the hearing and brain tumors group, because I don't know where it would belong. I'd really like to have some discussion on this topic. Thanks!

Interested in more discussions like this? Go to the Hearing Loss Support Group.

@ellene

@joyces Please post that information here. It was very good information and part of the reason I asked for a separate thread for balance, dizziness, etc. was because the information you provided was so good and would be so helpful to so many who may not have Meniere's or Hearing Loss. The main category I follow is brain tumors, but I do watch hearing loss. I was actually going to go back and try to find the information you posted and ask you to post it here. I would really appreciate it.

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In response to ellene: Ah, I've written long posts about proprioception and balance at least twice, once somewhere within the hearing forum and, then, due to a request, again in the Meniere's forum. I didn't save either post here, nor do I know how to find old posts successfully in Mayo forums. I'm still doing fire relief most days here, following a major fire in early Sept. that left nearly 300 families homeless, so I don't have much free time these days. I'll work on writing a comprehensive post about solving dizziness with proprioception, save it, and post it. That way, I'll be able to find it if someone asks again months from now.

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@ellene

I often joke that someone is going to call the police after they see me stagger through a parking lot, get into a car and drive away. And, never in a million years could I pass those old field sobriety tests. But my balance does not affect my driving skills. Thank goodness. I deal with disequilibrium, which I used to call dizziness even though dizzy didn't quite explain how I felt. I have an outstanding General Practice doctor who stays on top of all the findings of the specialists I see. That has been invaluable. He was the one who called it disequilibrium as opposed to dizziness. I find having the proper terms alleviates some of my frustration. The disequilibrium does, on occasion, make me nauseous, but Dramamine helps with that. Sometimes I have the sensation of my brain sloshing around in my head. It actually feels like my brain is moving inside my head. It is annoying, but the thing that makes me the most crazy is the oscillopsia. That means that whenever I move, stationary objects appear to be moving. For example, if I am chewing and trying to read my computer screen, the words move on the screen. It isn't so bad that I can't do both at the same time though. It happens as I bump along in my car and if I move my head, etc. Fortunately, it isn't so bad that I can't drive safely. I prefer to stay off the interstate though. It is uncomfortable. It was my Vestibular Rehab therapist who gave me the word oscillopsia for what I was experiencing. Again, the proper term has relieved my frustration along with anxiety and the feeling of being crazy. I found this article to be helpful: https://vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/bilateral-vestibular-hypofunction/ Early on, I found driving in the dark to be no fun. This is because, with a messed up vestibular system, I depend more on my eyes for balance and I am taking away some of that function in the dark. I prefer not to drive outside of town after dark. I didn't tell you that I have bilateral vestibular schwannomas also called acoustic neuromas. Essentially, that means I have benign tumors growing on the nerve that connects my ear to my brain on both sides of my head. I haven't had them removed, because of the high risk of total hearing loss in my case. I had Gamma Knife Radio Surgery, which is a kind of radiation. My tumors are still there, but they aren't growing at this time. I also have the diagnosis of Neurofibromatosis Type 2. I won't go into all of that. Anyway, the point of this post, is that just having terms for the symptoms I am experiencing has been helpful and empowering. I didn't get these words from my specialist doctors. But, my home doctor and my vestibular rehab therapist (who is in the physical therapy department of my home healthcare facility) were the ones who gave me terms. I guess if I had any advice it would be to keep talking about what you are experiencing, with whomever you are working with. You will learn different information from different sources. I also found Google to be helpful and, of course, this community here at Mayo Clinic. Best wishes to you all.

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Ellene: During the time I was disoriented, I avoided driving, which, of course, is very difficult, having to ask someone to take you here or there. I solved part of the problem (driving daily to the place that processed film and made color separations) by hiring an assistant whose job included doing the driving in heavy traffic. Even though you are not drunk or taking drugs, you can lose your license if you are stopped for "wobbling" or "meandering" while you're driving, and it may be impossible to get the license restored. So, if possible, don't drive at all or drive only if it is a real necessity, on a side road with little traffic, during low traffic times. You mention the problem of driving in the dark, which tells me that you're relying on vision, which is the problem: every time you move your head or go around a corner, you lose your focal point. You must learn to rely on proprioception, which is your third balance system. I'll work on a post, save it here, and post it...as soon as I have time to think it out carefully.

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@dsh33782

I'm interested in the topic of dizziness. I have been wearing HA's for 3 years now. I'm 76 and when I get up too quickly I sometimes feel dizzy so I try to do it more slowly now. I've always related it to a possible ear infection" But maybe it is just age.

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reply to Don Higgins: Sounds as though you have BPPV, an annoying and common inner ear problem of people generally past 50. You need to see a really good ear specialist, hopefully a neurotologist or the like instead of an ENT. BPPV happens when you move your head suddenly, esp. after not moving at all--like when you first wake up and turn over or get out of a chair after sitting quietly without moving. If it is BPPV, a qualified doc can do the Epley Maneuver to resettle the tiny crystals in your inner ear. Works for most people, although sometimes it needs to be repeated later. There's actually an entire book about BPPV, which I designed for VEDA (Vestibular Disorders Assn.) back in the 90s. I'll dig out the final pages sent to the printer and send you a PDF...or you might find it inexpensively at ABEBooks.com. I had asked VEDA to publish a book about Meniere's, which I have, but, first they wanted me to publish two other books about balance; I have all the final pages for all three books in one of my backup boxes of CDs.

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@dsh33782

I'm interested in the topic of dizziness. I have been wearing HA's for 3 years now. I'm 76 and when I get up too quickly I sometimes feel dizzy so I try to do it more slowly now. I've always related it to a possible ear infection" But maybe it is just age.

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@dsh33782 How is your blood pressure? Do you take your blood pressure after one of these events? What meds are you on? Have you been diagnosed with ear infections before? How did they treat them at that time? K

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@ken82

@dsh33782 How is your blood pressure? Do you take your blood pressure after one of these events? What meds are you on? Have you been diagnosed with ear infections before? How did they treat them at that time? K

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No ear infections I know of ever. I have been on amlodipine 19 mg and Benazepril 40 mg pills every morning for many years. No I don't take blood pressure except at doc visits.

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@dsh33782

I'm interested in the topic of dizziness. I have been wearing HA's for 3 years now. I'm 76 and when I get up too quickly I sometimes feel dizzy so I try to do it more slowly now. I've always related it to a possible ear infection" But maybe it is just age.

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Getting up quickly and getting dizzy is usually due to a sudden change to the blood volume loss in the brain causing the dizzy feeling.

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@plpineiro

Getting up quickly and getting dizzy is usually due to a sudden change to the blood volume loss in the brain causing the dizzy feeling.

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Rise slowly and steady yourself before walking. Speak to your Cardiac physician to check your blood pressure sitting than standing.

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If the dizziness continues after rising leaving you feel sick, nauseated, stagging and falling you may need to have a procedure called "Epplys" It is a method of re adjusting the partial in the inner ear that tell you when you are horizontal. It is difficult to find someone that knows this procedure. Usually a neurologist. It does not involve surgery or anything painful. Just a series of positions to adjust the particles back in place. You must keep you head up for a couple days, no down moment. The are no drugs to correct this problem.

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@dsh33782

No ear infections I know of ever. I have been on amlodipine 19 mg and Benazepril 40 mg pills every morning for many years. No I don't take blood pressure except at doc visits.

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Benazepril has some interaction with alcohol. It might be helpful to get a drugstore Blood pressure cuff. And keep a log of BP when you feel dizzy..
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@plpineiro

If the dizziness continues after rising leaving you feel sick, nauseated, stagging and falling you may need to have a procedure called "Epplys" It is a method of re adjusting the partial in the inner ear that tell you when you are horizontal. It is difficult to find someone that knows this procedure. Usually a neurologist. It does not involve surgery or anything painful. Just a series of positions to adjust the particles back in place. You must keep you head up for a couple days, no down moment. The are no drugs to correct this problem.

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Reply to pipineiro: Yes, the Epley maneuver, named for the Portland, Oregon doc who invented it. It has to be done correctly, but, if what you have is definitely BPPV, it fixes the problem. Some people do have to return for additional sessions after intervals of years, but it really works to reposition the tiny bits in your inner ear. Don't forget, though, that it's fairly normal to have more than one inner ear disease! A very high percentage of us with Meniere's also have BPPV. I've always supposed that we have weaker inner ear systems than the average bear, so are susceptible to more than one disease. For me, BPPV is only a fleeting thing, a moment on intense vertigo. I've always joked that you could tape $100 bills to the ceiling and I might never see them!

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