by Neil Bauman, Ph.D.
A man explained,
My younger brother is in his 30s. He developed bilateral vestibular problems of unknown cause. Now he doesn’t have any vestibular (balance) function left in either ear. He does OK during the day while walking on a hard surface as long as he has a cane or walking stick, but he still struggles with hills, slopes and stairs as well as when walking on soft surfaces. His eyes bounce when he walks and he often complains of this.
He has a tremendous amount of difficulty in busy places with lots of commotion and often times will use a power chair in such places as he struggles to keep from falling. The rest of the time he is able to manage with his walking stick or cane. He complains a lot about fatigue and I am hoping that will improve as well.
He is a teacher and we all hope he will be able to return to work one day but the stimuli of a busy classroom is very difficult for him.
My question is, “Do people with his condition ever regain their ability to drive?” What has been your experience with driving and loss of all vestibular function? I am hoping he will be able to drive again one day with rehabilitation.
Your brother’s condition goes by the fancy name of oscillopsia (pronounced ah-sih-LOP-see-ah) or bouncing vision. Oscillopsia occurs when your vestibular system is totally destroyed in both ears. Living with oscillopsia is not easy as you now know.
Fatigue is a constant companion. This is because the thinking part of his brain now has to take over the vestibular function as much as it can—a job it is not designed to do—in order to help keep him from falling. All this extra work takes a lot of energy.
It also means that his mental status will be “foggy” because his brain is so busy with balance issues that there is not enough “horsepower” available to optimally process things to be stored in memory, to think with and to process visual information.
That is why he has so much problem staying balanced in “busy” places. There is just too much sensory input for his overworked brain to process. “Busyness” isn’t only a lot of motion, it can also just be “busy” visual patterns. For example, the visually “busy” aisles in grocery stores can be too much to process so he may have to look at the simple patterns on the floor in order to be able to keep his balance.
Trying to find a place that isn’t visually “busy” is hard amidst the bustle of a city. But he can have problems, even amidst the wide open places in the country. For example, the wind blowing long grass or crops, or waves lapping the shore, can also be disorienting.
As he adapts to his lack of balance, he will find some tricks that will help him and thus take some of the load off his brain. Hopefully he’ll not be as fatigued, but keeping his balance will never be easy.
Personally, I don’t think it is a good idea for him to drive. He might be able to drive in a small town—but when something goes bad—a child darting across the street or a car whipping around the corner—the visual busyness may be too much for his brain to process fast enough and still do the right thing. So until he learns to cope in visually busy situations while walking—I wouldn’t recommend even attempting to drive.
I can only think of one man with oscillopsia that drives. He has to be very careful where he drives and he never drives at night, in poor light, in busy situations, etc. Typically, people with oscillopsia do not drive. In addition to the confusion caused by the “busyness” of congested roads, their bouncing vision can make it impossible for them to read traffic signs, etc. so they are not really safe to themselves or to others.
As for his career, if he is a good teacher, there is no reason for him to give up teaching as such. However, the visual “busyness” of the classroom may be too much for him. Even so, all is not lost. There are other possibilities. For example, he could tutor students in a small visually-plain room. He could also design/prepare lessons rather than actually teach them. In addition, he could teach people via a computer or phone. As you can see, there are lots of possibilities—but he’ll have to think outside the box.
Unfortunately, there is no easy way to overcome this balance problem. One secret to balance success is for him to constantly challenge his brain with exercises to help it strengthen its balance-processing capabilities.
My article “Protect Your Balance System, or Else…” will give you a lot of additional information on balance.
You may also be inspired by one man’s story of how he largely overcame his balance problems. You can read “Regaining Balance—One Man’s Story” here.
I also have bilateral vestibular loss.
I pretty much managed a full recovery. It takes a lot of work but it can be done.
I now do most everything I did before.
I had sudden profound deafness and bilateral vestibular loss 11 years ago. The loss of balance was harder to deal with than the deafness. Rehabilitation exercises are vital and I still do them everyday.|My balance still isn’t great. I use a stick. It took over a year before the ‘busyness’ stopped and I had the courage to drive locally. However I still can’t drive in the dark but at least I have gained back a little bit of independence. Family support and a bit of luck goes a long way.
i became deaf 3 yeaars now and also have a vestebular disorder doc tells me there is no function at all ,i hate it ,have cochlear implansto hear but the balance vestebular is still here she said there is no help and just left me this way ,went for therapy but there was no change so they stopped me from haveing terapy is there anything that can help me ?if i use a walker or hold husbands arm im fine but i want to be able to get round alone ,any help ,please ty
I lost bilateral function when I was 25, I was told I would never wear high heels or play any sports again… Maybe golf. Devistating for an active young woman.
However, I am 41 now and I wear high heels, dance, ski, bike, run, walk and drive day and night. All on my own. The best rehab is to challenge yourself daily. You will learn tricks ( coping mechanism) for example when walking down a hall in a crowd, run you hand along the wall or gently touch the person ahead of you( hopefully they are with you:)) fix your vision on stationary point. Think of a ballerina when she twirls, she keeps her balance by focusing on a single point. This will become second nature.
I did take up golf by the way and I love it.
What is your tips on driving?
I have had bilateral vestibular hypofunction for 12 years now. I totally agree with you to challenge yourself each day. I have given up driving at night unless I absolutely have to , ice skating, riding bike…I took up golf, I hunt with a bow, kayak, hike…I just have to do things slower and can’t do much at night. Darkness is really my worst enemy anymore. Otherwise, I find an alternate way of doing things that I want to do.
My Dr taught me that touch therapy by touching things around you.
I also am bilaterally damaged with oscillopsia. This happened a little over 5 years ago. I am still a work in progress, but not giving up. Challenge is the game and no pity parties. My symptoms are pretty much as you described your brothers… I DO do limited driving. Fortunately, for me, I have a very pushy sister & therapist who would not let me give up or give in. Am I fully “healed”? NO! I am making positive strides. Like I said, I am a work in progress aren’t we all anyway? This recovery / coping takes time, a lot of it, patience, a desire to move on and HOPE! Don’t give up hope… keep working at it and keep challenging him. Best Wishes, 🙂
After years of retraining, I can drive without too many problems when the weather is bright. Rain, snow, fog, and winter evenings wear me out quickly. It can take days or weeks to recover. Walking is harder for me, especially uphills and in shopping isles. I look for a far point and focus on it to manage better. Taking a low dose of biphentin helps the mental fatigue. I am working my way back into the classroom and getting better.
Hi i was just diagnosed a year ago with bilateral vestibular loss of balance reflex. Dr says complete loss that if i have any its a bare minimum. But i have no idea when it happened and have alot of symptoms. Shut my own head in doors i have drop attacks my eyes feel funny and at times one feels delayed i also have the bouncing when walking and feel very on edge and a zwaying motion when i drive at night. Seem to have substituted for loss by a head tilt. Also have started hearing voices 24/7.
Hi Christina:
If you have lost all vestibular function, I’d begin vestibular therapy to help your brain learn to keep your balance via your eyes and proprioceptive systems.
If you have some resulting hearing loss, I wouldn’t be surprised if your “hearing voices” is just Musical Ear syndrome.
Cordially,
Neil
Hi yes sir I hear voices in everything it drove me crazy the year I posted this and it lasted until a yr ago. I still hear it 247 but I’ve learned mostly to ignore it. I was rediagnosed with BVH and now I’m finding it hard to explain these voices to people plus it didn’t help my bipolar either. I’ve lost all these years because of these noises voices drove me into psychosis and ruined my life. Ruined my freindships family my disability I lost all the way because I kept getting stressed out n missing my dead lines. This isn’t fair now I have no more work credits and many issues. I don’t know what to do.
Hi Christina:
There are three common reasons for “hearing voices”. First is schizophrenia which is a mental illness as I’m sure you know. The second is called musical ear syndrome (MES) and it is quite common in people with a hearing loss. The third is called audio pareidolia and it is mostly in people with normal hearing whose brains convert the constant background sounds of fans and motors (for two common sources) into voices or music. When the device is turned on, you hear it and when you turn it off it instantly goes away. These latter two conditions are NOT psychiatric in nature.
A lot of drugs can cause you to experience the first two conditions. If that is the case, the solution is to get off them.
Also, a lot of drugs can affect your balance system. So that could be the cause of your bilateral vestibular hypofunction (BVH). Again, if this is the case, you need to got off any such drugs if you are taking them.
If you tell me which drugs you are on, I can tell you whether they are likely to have caused MES or BVH.
Cordially,
Neil
Hi, I noticed your reply to Christina and would love to see if you can go over my meds to see how I ended up with 8% bilateral hypo function. My Neurotologist told me it was from a virus but I was recovering from foot surgery in bed when one day my entire world turned upside down literally. I did have a delayed reaction to Tylenol 3 after surgery and strongly believe that’s what caused my vertigo leading into the severe hypo function. I would love to see if you could go over my med list around the time mine occurred and give me some insight. Thank you so much.
Hi April:
Sure, send me the list of drugs you took and I’ll give you my opinion of whether any of them likely caused your low vestibular function.
If it really was a virus, I’d expect you to also have hearing loss and/or tinnitus as well as balance problems.
Cordially,
Neil
I don’t know if you will see this but this is me. I am going through it since after my foot surgery in Nov 2020. In December I had vertigo for 6 weeks and now I have bouts of swaying, all that you mentioned above. Finally someone else that has the same as I. My Neurotologist told me it was due to a virus but I was never sick. I was laying in bed not able to walk from foot surgery. I still believe it was something else that caused it but I don’t know what. My entire life has changed and now I’m back to work and forced to work outside in 98 degree heat and 90% humidity. I feel like I’m dying while the world rocks around me. Faces sometimes change briefly and I hear things that isn’t there even though it’s only my balance that was affected. My function is only 8% bilateral. I don’t know how much I can take of this. How are you coping? How long have you had it?
my bilaterial vestibular lossm started
2005. almost deaf in left ear, have
hearing aids both ears. No balance
and must use walker. several
physical therapy sessions but no
improvement. walk up and down
stairs for exercise in lieu of lift
chair. I’m 88. Lucky this started late in my life. must keep plugging..
don’t expect any improvement..