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Old 10-10-2006, 12:33 PM   #14
Join Date: Sep 2006
Location: Gloucestershire, UK
Posts: 78
billybignose HB User
Re: bilateral vestibulopathy

From personal experience the only thing I avoid rigidly (almost) is alchahol - it won't do you any harm at all but it will make you feel a bit woozy, and may take a day or two to subside (alchahol actually effects the viscosity of the fluid in the chambers of the inner ear (which is why it often goes "straight to your legs") but as your brain is wrestling to understand the signals comming from the inner ear any way then adding to complication doesn't help). I think they key is try and be as active as possible, including walking (even short walks) everyday, mall walking (busy visual/crowded environments are usually hard to cope with because we become over reliant on our vision for balance) is also good, try it early in the morning when it's quite and slowly build up to slightly busier times. Of course it's important not to overdo things (as this can be counter productive) so try and pace yourself and if something causes you symptoms that last for hours after, then it's a good sign you're pushing too hard, which is too much for your brain to learn from. But ultimately everything is good as it all helps the brain learn to adapt to the new signals comming from the vestibular system, and reintegrate them with signals from the eyes and postural sensors. It's worth eating well, and sleeping enough as your brain will learn best when everything is at it's optimum, but there isn't anything specific to help with compensation. A symptom one person suffers may not be an issue for the next and vice versa, so it's very much a "suck it and see" type approach, because your brain actually does a large part of the compensating in first few days, and whats left is the fine tuning (even if it doesn't feel that way), so it all depends how your brain adjusted to various stimulae so far, if somethings really bothersome for you then you will need to build up to it. Some people find busy environments awefull, others can't walk far without extreme vertigo, and so on.

If the problem was caused by a virus it is often termed labyrinthitis (inflammation of the labyrinth) or vestibular neuronitis (inflamation of the vestibular nerve) clinically it's impossible to differentiate where the problem lays (without doing an autopsy!!) so most docs use them interchangably, though some docs suggest that if there is hearing loss then it's labyrinthitis (implying the cochlea is also involved), otherwise it's vestibular neuronitis - though it's all semantics really. At this stage it's irrellavent anyway as the virus will be long gone, and your are now dealling with the damage left in it's wake and the recovery process is the same (it's like with a broken arm - once it's broken the cause is no longer relevant, the recovery process is the same).

It is possible to get bilateral Vestibular neuronitis - though it's not too common, regardless the recovery process is the same. I really wouldn't get too hung up on what the calorics/eng results were, as the test are incredibly inaccurate anyway, and as I mentioned before some people just don't respond well to calorics (ie the water/air isn't enough to stimulate the vestibular system - in case you don't know the test works by the hot/cold water (or air) heating the outer ear on one side, which conducts the heat through to the inner ear and the fluid inside expands/contracts this has the effect of stimulating the vestibular apparatus on one side, and not the other, causing your brain to assume your moving and the VOR moves your eyes in the opposite direction to counter that movement, it's these eye movements which are recorded - as you can see it's hardly rocket science, and there is no way of knowing whether the vestibular system is really stimulated other than the result you get back, and getting a back weak or absent readings (especially on both sides) isn't really indicative of anything). There are quite a few "normal" people who have weak or absent calorics, there are also quite a few with a natural imbalance between the ears (ie one side is stronger than the other, and just like eyes thats not too uncommon) however it has no impact on their balance, so calorics don't show the whole picture. Based on what you've said (and that you are suffering vertigo - bilateral patients often don't) I'd be more inclined to discard some of the ENG results and say it's more likely you have dysfunction on one side - not that it matters as recovery is the same. BTW I've heard of quite a few true bilateral loss patients (caused by intraveinus gentamicin) who have absolutely no response to calorics on either side however they vastly improved with VRT.