Has anyone on this board heard of bilateral vestibular dysfuction with polyneuropathy?

I did a random internet search last night and came up with a few hits on the bvd + pn but there wasn't too much info. In may 2007 after my vertigo hit I had a VNG/ENG done that showed I had severely reduced responses to the caloric testing. None of my doctors have even commented on that or suggested we investigate further.

Anyone with a similar experience.

Kelly

What your B12 levels are. The actual numbers.

When the auditory nerves act up, it can be similar to optic neuritis which can be due to autoimmune issues or low B12.

Most of the diagnoses I see for vestibular issues are "viral".
This is the typical cop-out when answers are not evident.

I myself have "attacks" in my left ear. I have had several of these over the past 60 yrs. Some that have been severe and put me in bed in one position for days! When I had testing for vestibular function long ago, they told me it was most likely due to a head injury (abuse when I was a child) or measles. The test was very low in that ear, but I do have at least 50% hearing there, and poor balance (esp when eyes are closed) still. When I was very hypothyroid I lost some hearing but that has come back with thyroid hormone treatment. I have only had one vertigo attack since my thyroid was "fixed"...and that was due to Glucophage..a drug. So that sort of tells me that my vertigo is somehow connected to the hypothyroid. I also have damage on the left lobe of the thyroid as well. (coincidence?)

When I used Glucophage for insulin resistance I developed a severe attack (I think was due to acidosis), and had to discontinue the drug.

The ears are very sensitive to fluid accumulation. This is called benign serous otitis media when not infected. I was given that diagnosis too. I have had my ears drained with a needle once (this was a horrible experience) and to this day, I get seepage of the fluid if I don't take antihistamines regularly. I tend to get dizzy/lightheaded when that pressure builds. I find Guaifenesin helpful in draining it.
When fluid builds in the middle ear it presses on the eardrum which then causes dizziness/vertigo.

I think that there are manual causes of dizziness.
Did you have an nystagmagram (where they blow warm air into the ear and measure with electrodes the response)?
Even with that test, they told me I should be deaf in my left ear and I am not. So I have wondered for most of my life how accurate the testing really is. I had a normal caloric response in the right ear...it is only the left that gives me grief.

Basically I don't think medicine understands everything about ear functions yet. So the only thing YOU can do is cover the nutritional bases, and supplement those things that help nerve functions.
B12
folic acid
fishoil
magnesium
B6
etc.

Do you have neuropathies elsewhere? Or only the ears?

Thank you for the reply. My neuropathy is body wide. I still have daily epsiodes of vertigo however they are mild episdes for the most part. They started in March 2007.

The found a mild upbeating nygstagmus but it was poorly sustained. The caloric responses were noted as severe. more so in one ear then the other. I will have to pull the test result to confirm which ear is worse.

My latest b12 numbers I don't have but I can reference most of the others from test results later tonight if you like. I know that they did do the blood tests for all those items and the neuro said that we have ruled out the easy stuff and now we need to look at hereditary or immune problems. Just waiting for an appt with the Neuro that specializes in PN.

My father has CMT type 2...but neuro says I have not physical signs of cmt. I'm pretty sure they will run the blood panel for that as well. My sx are not like my fathers at all and it does not look like my test results for the NCV are anywhere near similar either.

Many doctors say fine (when in reality they are low by modern standards).

You also need a Vit D test to see if you are low. Posters on boards like this are showing up in surprising numbers as low in Vit D...causing paresthesias. (a disruption of calcium metabolism). So I'd get that done.

If you are on Topamax (some use it for pain), I'd get a serum bicarbonate run as well. Topamax causes acidosis in about 30% of patients or more, and that acidosis is what did ME in with Glucophage! Nerves are very sensitive to pH changes in the blood. Minute changes cause alot of paresthesias.

Hi Mrsd.

Thanks for the info. I'm not on any meds. Still waiting on a call to get an appoint with the new neuro. By the time I get in to see him my list of questions will be sooo long he is going to feel like he is be interogated. LOL

I had the majority of my vertigo attacks long before my feet
"went". (the hypo thyroid seemed to really kick in at around 30).
I am almost 62 now.

I had two within 2 yrs of delivering my son. One was triggered by a test I had 2 mons after delivery. They gave me 4mg of dexamethasone to measure my adrenal functions, and the day after that I had a huge vertigo attack. That one was a real bummer with a preemie to take care of.

The one connected to Glucophage lasted almost 6mos...the worst was in the first week. It took me a while to link it to the drug, and once I ended it --the dizziness slowly went away.

Sometimes at night now I get dizzy in bed. I often wonder if that is my blood pressure medication? (I take it at night).
But that terrible vertigo, where you cannot even walk I haven't had now in several years...knock on wood!

I never connected my ear problems to neuropathy. But I suppose there may be some connection because of the hypothyroid issue which also causes PN.

So I wish you luck...it is just very hard to isolate things medically sometimes.