Mij
Senior Member (Voting Rights)
@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!
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!
Forbin
Senior Member (Voting Rights)
@Forbin Please share
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.
Last edited:
Mij
Senior Member (Voting Rights)
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.
Forbin
Senior Member (Voting Rights)
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.
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.
MSEsperanza
Senior Member (Voting Rights)
Only now found this thread.
Had a new level of vertigo after my 3rd Covid infection last summer. Got it checked by an ENT doctor who found an 'under-excitability of the left vestibular organ' and ordered an MRI to rule out a structural cause.
MRI is in a couple of weeks.
Will report then.
Until then would be interesting to hear whether other members had similar issues (one-sided under-excitability of one of the vestibular organs) and their experiences.
Interestingly, another type of my collection of diverse vertigo types, and also one type of my diverse tinnitus noises disappeared with long term cortisone-treatment for another condition -- but all in all , other types of vertigo got more debilitating, especially while being on the initial high dose for several weeks.
Had a new level of vertigo after my 3rd Covid infection last summer. Got it checked by an ENT doctor who found an 'under-excitability of the left vestibular organ' and ordered an MRI to rule out a structural cause.
MRI is in a couple of weeks.
Will report then.
Until then would be interesting to hear whether other members had similar issues (one-sided under-excitability of one of the vestibular organs) and their experiences.
Interestingly, another type of my collection of diverse vertigo types, and also one type of my diverse tinnitus noises disappeared with long term cortisone-treatment for another condition -- but all in all , other types of vertigo got more debilitating, especially while being on the initial high dose for several weeks.
Last edited:
MSEsperanza
Senior Member (Voting Rights)
And now wonder, as verstibular issues seem to be very common in the general population, how oftensymptoms classified as Orthostatic Intolerance or 'POTS' are indeed caused by a malfunctioning vestibular system, unrelated to ME/CFS?
Or could the proposed signalling problems underlying ME/CFS also include the vestibular system?
Jonathan Edwards
Senior Member (Voting Rights)
Vestibular problems are extremely common. But I don't see them as likely to be the origin of OI symptoms in ME/CFS. Vestibular problems present acutely with spinning of the world rather than 'dizzyness' and in the long term make you unstable and bump in to things, but without feeling you need to lie down (I have one non-functioning and one poorly functioning vestibular apparatus).
I had vestibular problems earlier this year; the first episode followed (?) a viral infection. It’s triggered by simply turning my head, even with eyes close : the world is spinning. It can be from only one side. It was acute and I could’t move without falling or have an urge to vomit. The episodes lasted three or four days each.
It is quite different from the "dizziness" I experienced with ME, where I have sensation of world movement, in opposite sens of the movement I am doing or just stopping to do. It is without nausea.
I think there’s a psychotropic drug* that makes you feel as though you’re leaning forwards, so you end up leaning backwards. My "ME dizziness" (beginning with ME) experience is rather like that.
I had also an hypotension not orthostatic, beginning with ME.
Edit :
*I am unable to find anything at this subject, I must have dreamed ! But I remember now have done a vestibular test at an ENT specialist that was negative, so the hypothese it is a neurologic dizziness remains.
It is quite different from the "dizziness" I experienced with ME, where I have sensation of world movement, in opposite sens of the movement I am doing or just stopping to do. It is without nausea.
I think there’s a psychotropic drug* that makes you feel as though you’re leaning forwards, so you end up leaning backwards. My "ME dizziness" (beginning with ME) experience is rather like that.
I had also an hypotension not orthostatic, beginning with ME.
Edit :
*I am unable to find anything at this subject, I must have dreamed ! But I remember now have done a vestibular test at an ENT specialist that was negative, so the hypothese it is a neurologic dizziness remains.
Last edited:
shak8
Senior Member (Voting Rights)
You can do the Epley Maneuver at home for benign postural vertigo that results from post-viral infections.
I usually have had to repeat it twice for best result. (I am a senior and get vertigo after respiratory viruses, as well as due to non-allergic rhinitis.)
There are also videos on the web that show it which are helpful.
If you have a neck or cervical spine injury you should see a doctor and not try it at home, I think.
I usually have had to repeat it twice for best result. (I am a senior and get vertigo after respiratory viruses, as well as due to non-allergic rhinitis.)
There are also videos on the web that show it which are helpful.
If you have a neck or cervical spine injury you should see a doctor and not try it at home, I think.