Balance, Dizziness, Disequilibrium, Oscillopsia, etc.

Posted by ellene @ellene, Feb 19 4:17am

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!

Hi @ellene, Great idea. This discussion thread now appears in 4 groups as balance and dizziness issues apply in all these areas:
– Brain Tumors https://connect.mayoclinic.org/group/brain-tumor-support-group/
– Brain & Nervous System https://connect.mayoclinic.org/group/brain-and-nerve-diseases/
– ENT https://connect.mayoclinic.org/group/ear-nose-throat-conditions/
– Hearing Loss https://connect.mayoclinic.org/group/hearing-loss/

Here are some related discussions:
– Chronic dizziness due to vestibular issues. https://connect.mayoclinic.org/discussion/chronic-dizziness-due-to-vestibular-issues/
– Dizziness for over 2 years. https://connect.mayoclinic.org/discussion/dizziness-for-over-2-years/
– Chronic subjective dizziness https://connect.mayoclinic.org/discussion/chronic-subjective-dizziness/
– What exactly is proprioception? Anyone with experiences? https://connect.mayoclinic.org/discussion/propriociption/
– Benign paroxysmal positional vertigo https://connect.mayoclinic.org/discussion/benign-paroxysmal-positional-vertigo-1/

@lois6524 @bride @maryjax @joyces @larryg333 @nrd1 @tootstilbury will be interested in this discussion.

Ellen, can you please share your experience with balance and what you've learned?

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@colleenyoung

Hi @ellene, Great idea. This discussion thread now appears in 4 groups as balance and dizziness issues apply in all these areas:
– Brain Tumors https://connect.mayoclinic.org/group/brain-tumor-support-group/
– Brain & Nervous System https://connect.mayoclinic.org/group/brain-and-nerve-diseases/
– ENT https://connect.mayoclinic.org/group/ear-nose-throat-conditions/
– Hearing Loss https://connect.mayoclinic.org/group/hearing-loss/

Here are some related discussions:
– Chronic dizziness due to vestibular issues. https://connect.mayoclinic.org/discussion/chronic-dizziness-due-to-vestibular-issues/
– Dizziness for over 2 years. https://connect.mayoclinic.org/discussion/dizziness-for-over-2-years/
– Chronic subjective dizziness https://connect.mayoclinic.org/discussion/chronic-subjective-dizziness/
– What exactly is proprioception? Anyone with experiences? https://connect.mayoclinic.org/discussion/propriociption/
– Benign paroxysmal positional vertigo https://connect.mayoclinic.org/discussion/benign-paroxysmal-positional-vertigo-1/

@lois6524 @bride @maryjax @joyces @larryg333 @nrd1 @tootstilbury will be interested in this discussion.

Ellen, can you please share your experience with balance and what you've learned?

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I've posted about proprioception and how balance works on both the hearing and Meniere's groups. Don't want to bore anyone by repeating all of that post.

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I would be very interested to hear the advice you were given. I had a t glioblastoma and are Dealing with in balance issues. The only advice I get from my doctor is that could be your new normal nothing else.

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@hinklda

I would be very interested to hear the advice you were given. I had a t glioblastoma and are Dealing with in balance issues. The only advice I get from my doctor is that could be your new normal nothing else.

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reply to hinkida: Never listen to such stupid advice!!! I was told to quit my "silly" job, take Valium, stay in bed. Fortunately, I didn't do any of that! I needed the income as my daughter was attending an expensive private college, I'm actually allergic to Valium, and staying in bed, coupled with the real problem (low hormone levels) would have made an invalid of me due to osteoporosis. You need to see a vestibular rehab specialist, and do the exercises every stinking day…for the rest of your life. They're easy, often can be coupled with normal daily activities, and will make a real difference. Basically, you learn to use your third balance system (proprioception). I've lost all balance function in one ear and the other is compromised, but at 78 I still do very difficult instream data collection for our state fisheries agency…in a stream more than an hour from any cell reception, entirely by myself, hiking and wading miles. I also distribute food for both Covid relief and fire relief almost every day, often working many hours doing lifting, picking items off shelves to pack boxes (lots of movement and bending, reaching, turning). You CAN live a normal life!

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Thank you. Vestibular rehab specialist. I'll work on getting a referral to one. I've had problems for nearly a decade. I've seen many different doctors. No one has been able to give me relief, and I'm handicapped by it.

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Try to lay down on your back with your legs straight along the wall. Be very close to the wall. Your arms along your body. Keep this position when breathing peacefully for 10 minutes. After you sit down and wait a little time to have your dizziness pass away. Do it every morning. After a week you will feel a difference. Do not forget to breath. Sit down till you feel more comfortable. I hope it will help you. It worked for me. Good luck. Ginette

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@ellene. I had never really paid any attention to the relationship between balance and my ears until my acoustic neuroma was removed. After the surgery I threw up every time I moved my head for a couple of days; and I had to relearn how to walk. I'll never forget holding on to a wheel chair for dear life and pushing it up and down the long beautiful marble halls in St. Mary's Hospital in Rochester. The doctor hadn't warned me about that, so I wasn't prepared for it. I too have been a little frustrated with being able to find information on specific topics on MayoConnect or knowing where to post because the same issue is discussed in so many different places, even different threads under the same general topic. It's usually such good information I hate to miss it because it's in a discussion group I'm not following or under a thread I haven't found. MayoConnect has no control over where 100,000+ people post comments; but it seems as though a good search engine that members could use should be able to sort through all the posts to help us find things. That comment probably shows my ignorance about how computers work, how difficult that might be over time, and my failure to know how to use the current search feature properly. I just know I've typed something in and gotten a bunch of stuff back that has nothing to do with what I'm looking for. I would love to type something into the search function and get back a report of the collection of posts exactly like the one Colleen listed above. I've learned so much from the people on this site and know there is more there to learn I haven't found. For example, a post someone made referencing an article on MAST cells and functional medicine last December has led me on an amazing journey of discovery and learning about really cutting edge things that in my opinion are revolutionizing medicine. I wouldn't have known about them if the link hadn't been been posted and I hadn't opened it. Thanks MayoConnect!

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@joyces

I've posted about proprioception and how balance works on both the hearing and Meniere's groups. Don't want to bore anyone by repeating all of that post.

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@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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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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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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@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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