Vestibular issues

Ok, you go first

 

Lol!

Actually, were my dizziness still like what it was in the 1980's, I probably would have already gone. It's safe to say I've tried weirder things.

 

@Forbin Please share

I turned into a complete drama queen when they did the vestibular caloric stimulation test at the hospital. Pouring cool water in my ear, turning the lights off and asking me to count backwards from 100 was more than I could handle when my head starting spinning at full speed!

 

Let's see... bio-feedback, 2 months of psychotherapy (until I showed up with my vestibular results and was "fired"), half a year of multiple, self-injections for food and pollen allergies on alternate days, rotation diet, eye-exercises, niacin therapy, several 24 hour holter monitors... none of which led to improvement or revealed anything.

I had the caloric test, although mine was conducted in a dark "box," like a phone booth. There were other odd tests in that booth that I can't specifically recall.

I had a weird precursor to a CAT scan (possibly called "poly tomography") that involved lying on a tilting platform as an articulated robotic arm suspended from the ceiling swiftly swung in odd gyrations over my head, projecting x-rays. That went on for at least 20 minutes. (I've always wondered just how much radiation I got from that). The idea seemed to be to create an interference pattern of x-rays that all focused on the inner ears in order to produce a 3D image (I think).

There were other tests which involved things like being spun in a chair and suddenly stopped.

I feel like I'm forgetting some other weird "treatments" that I tried.

I don't really recall that the provocative tests made my dizziness all that much worse in my case. For instance, I don't believe that the caloric test produced severe vertigo - but this was 36 years ago.

I have experienced severe, true vertigo on maybe a dozen occasions and I know how frightening it can be. To me it feels like one or the other eyes is whipping back and forth trying to lock onto something because the brain thinks it's spinning (an example of the connection between the eyes and the inner ears). The confused visual input makes it nearly impossible to function and you're lucky if you can find a place to sit down. It feels a lot like you're about to pass out, but I don't think that happens unless the fear leads to something like vaso-vagal syncope.

One thing that I know promotes this (in me at least) is if my face is pointed downward and then I rotate my head about the vertical axis. This can happen if I'm picking something up from the floor and turn before I return to a vertical position. It also can happen if I'm sweeping the floor with a broom (looking down) and turn too quickly. I've been told it's due to tiny crystals/stones (otoliths) being displaced in the inner ear.


Perhaps the reason the Mt. Sinai treatment doesn't seem too concerning to me is simply because I've never had a really serious response to these prior "tests," despite their revealing a significant balance impairment.


Now, try to get me interested in a study where you consume high fructose corn syrup on an empty stomach... Let's just say that that's not gonna' happen.

 

Yes that is correct. I can no longer blow dry my hair upside down and have to put my foot up on the wall at eye level to tie boots or sneakers. Also, looking upwards with my arms up (putting up curtains or cleaning vents) makes me feel very unwell for hours after, but I think that might be due to "OI"? Not sure, it's all muddled together.

That is interesting that you didn't experience vertigo with the caloric test, I thought everyone did. I think they did that test to r/o nystagmus.

 

I had been diagnosed with nystagmus several months prior to all these tests. An internist noted it a couple of weeks after onset. It's possible that I just don't remember a spinning reaction to the caloric test, or it might have been less noticeable to me sitting in the dark.

I'm also not sure that vertigo is ubiquitous with the test. I've found a couple of websites that say something like this:

Bolding mine.

The test seems to mainly be looking for eye movement as a reaction. Cold water turns the eyes one way; warm water turns the eyes the other way. It is the absence of eye turning that is diagnostic of a vestibular problem.
https://en.wikipedia.org/wiki/Caloric_reflex_test

At any rate, I was diagnosed with a fairly significant balance impairment in both ears. I think the impairment was something like 40% in each ear but, I'm having trouble finding the printed results just now.