I've been reading through "manybikes" posts and have a question I was hoping he might be able to provide some insight into.
I've been dealing with BVL for a few years now. Like manybikes, mine started out as short lived episodes of vertigo, but one night the vertigo turned into oscillopsia. Long story short, MRI and CT were fine and the ENG revealed nearly 100% loss in both ears even with the ice water. Normal hearing in both ears but with a touch of tinnitus that is equal in both ears.
For the last three years I've been going through periods of oscillopsia. Typically the symptoms will come on very quickly, usually overnight, then take anywhere from 3 to 7 days to diminish. Occasionally it builds up over a few days and takes a few more to go away, but usually it's of rapid onset.
At first I was getting two or three of these multi-day episodes per month. Over the last year or so they've gradually diminished in frequency to once every couple of months. Between "attacks" I can feel pretty normal. I'll hae a very slight visual blur on quick head turns in one direction, but other than that my vision is good.
The episodes are usually pretty severe. Forget driving, forget walking down the road. I'm pretty much confined to home. Even at home just turning to look at the clock my vision is a blurry mess and I have to hold my head perfectly still.
Between episodes I feel great. Clear smooth vision with barely a hint of jitteriness, perfectly agile and coordinated walking around busy places, stable vision while driving. Basically feeling "If I could feel like this all the time, I'd have nothing to worry about".
However, even between "attacks" I'll have days here and there where I'm "off". My balance will be a bit off, walking straight while turning my head to look at grocery shelves will be a bit uncomfortable and I still don't like to drive on mountain roads where near and far things like trees and hills in the background are moving at different speeds. It screws up my sense of orientation.
My big frustration is with how my brain seemingly figures out how to compensate for the BVL, and then goes and forgets everything it's learned.
Any tips or thoughts on what could be causing this?
Hi there. I've had bilateral vestibular problems for almost 14 years now, and like you, have had periods (sometimes really long stretches) where I was essentially free of symptoms. Maybe a bit of imbalance or occasional vertigo, but nothing too bad. But I have also always had problems with aural pressure/fullness during flare ups (which can last for months). Like you, a bit of tinnitus in both ears and absolutely no hearing loss. In fact, even recent hearing tests have shown that I have perfect hearing across the board. It's weird. Because I have no hearing loss, and rarely have spinning vertigo, the oto-neurologists don't want to say I have bilateral Meniere's disease, although some of them do think I have something along the lines of non-Meniere's endolymphatic hydrops or whatever. Not exactly a helpful diagnosis.
For the last two years my symptoms have been worse and I've had periods of oscillopsia while walking down the street or eating something crunchy or clapping my hands. Can't easily walk a straight line while turning my head to look at things. Experience aural fullness/pressure and constant dysequilibrium as well as sensations of falling and bouncing. And then, for no good reason, I'll have a "better" day out of the blue where my symptoms are significantly improved (never back to normal, but better). Overall, I feel somewhat disabled a lot of the time, which is scary as a 35-year-old (still managing to work full time, but it's not easy).
My thoughts about what I have:
--Some kind of "immune-mediated" or autoimmune disorder affecting my inner ears. It all started a few months after a "mono" infection, and my Epstein-Barr and Cytomegalovirus titers where elevated at the time. Maybe this set activated some kind of immune response in my inner ears. I am not a doctor, so can't really do a better job of theorizing or explaining (then again, no doctor has ever managed to help me, and I've seen plenty).
--Either way, it does some like my inner ears are easily affected by things like stress/salt/alcohol/etc. But not always. I can be doing everything right in terms of diet (i.e., Meniere's diet) and be getting plenty of rest, and then still have a flare-up of symptoms.
--Over the last five years, I've also developed some neuropathy-like symptoms in my feet, lower legs, and hands. Some very mild weakness. Moderate tingling/numbness/nerve pain which fluctuates greatly. There's a condition called Cerebellar Ataxia Neuropathy and Vestibular Areflexia Syndrome (CANVAS), and sometimes I wonder if I have some degenerative neurological condition along those lines. Not sure I'd completely fit the bill. But there's been no other explanation for these peripheral neuropathy symptoms.
I've been tested for almost everything under the sun, and still no answers, so I'm just holding out for a vestibular prosthesis--hopefully they'll have one perfected by the time my ears totally crap out on me!
BTW, I totally relate to the driving problems when symptoms are bad. I've actually found myself in situations where I wasn't sure whether I was driving up a long straight hill or down a long straight hill, because I could see any meaningful reference points and my ears were not helping me out...scary.
I am BVL and I have the same issues with feeling ok for a few days and then it seems as if my brain forgets everything about what it has learned. Hopefully Manybikes will be along to explain. I tend to think it is the brain just taking a break from working so hat all the time. I get the same way with my vision, sometimes even trees swaying in the distance can make me feel like I am falling over.
Do you still have problems with your oscillopsia? Mine tends to bother me when I am stressed out and tiredly those days I need to bring my cane along. One of my biggest problems now is the fatigue, I am always tired.