Re: BVL Question
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.