Any unilateral or bilateral vestibular sufferers here

Hey all, just curious to see if theres any unilateral or bilateral vestibular loss sufferers here in addition to MAV. From my previous appointment I just had, this seems to be the way I’m going in addition to MAV. Off to John’s Hopkins in the US to get confirmation though, just wondering about some tips, experiences, and any hope for a semi normal life if any of you are on here

I don’t mean to be flip, but I think that’s everybody here.

Ok then fair enough, I didnt realize most here had mav in addition to vestibular function loss on either one or both sides

I was one sided on the left and now the right as of middle of March. Wish there was a way to reverse all this.

I have unilateral damage. Confirmed by VEMP as well as high frequency hearing loss. Have a MAV diagnosis. Let us know what you land up finding in Hopkins. Are you on MAV meds

Unilateral here. But I get stretches of bilateral symptoms (tinnitus in good ear)

Er, how would one ever know?

I was told there’s nothing wrong with my hearing following audiogram, CT and MRI the latter of which included something extra (never got to the bottom of what it was, which is unlike me but I was feeling C&&p at the time) because the N-O was especially keen to see about my ears. This was reassuring as the same N-O tested my hearing at the initial assessment with a tuning fork! Honest he did! Was amazed. Hadn’t seen one for years. For a dreadful minute thought he was going to ask me to SING.

Despite my clear results I do have slight near constant tinnitus in right ear and get it in both ears when due/having acute attack/breakthrough. If that says anything about it, somebody please enlighten me.

I’ve read any imbalance in ear function can result in vestibular problems on it’s own, ie without migraine or an acute vestibular event, so imagine many MAVers may be unilaterally affected. I have also read that bilateral vestibular loss is so disabling and so obvious to the profession that it could not go unnoticed although with training it’s still possible to balance with total bilateral loss because, as we all know, there’s alot more to balance than ‘just’ our ears.

Onandon03 asked: Er, how would one ever know?

@Onandon03, you would know from your vestibular test results (not an MRI or CT scan) and whether the results differed from one ear to the other. If you don’t have copies of your test results, make sure that you get copies and always keep a set for yourself. (I keep mine in a 3-ring binder.)

Here are the tests that I’ve had, as an example. All except the last two are testing your ears or balance systems:

  • Audiological Analysis [1998, 2016]
  • OAE (Evoked Otoacoustic Emissions) [2016]
  • BAER (Brainstem Auditory Evoked Response) [2016]
  • ECoG (Electrocochleography) [2016]
  • CDP (Computerized Dynamic Posturography) [1998, 2016]
  • VEMP (Vestibular-Evoked Myogenic Potentials) [2016]
  • V/ENG (Video/Electronystagmography) which included the Dix-Hallpike Maneuver and other positional head testing [1998, 2016]
  • Rotary Chair test [1998]
  • MRI of the brain, with and without contrast [1995, 2016]
  • EEG (Electroencephalogram) [2018]

I’m currently on 25 mg of amitriptyline, my doctor was considering moving it up to 40 eventually, but I’m waiting to see what the docs at John’s Hopkins have to say. I’m also on a 20 mg dose of generic lexapro as well.

Unilateral for me as well coupled with MAV

Curious, I recall seeing a post/discussion a while back on here regarding MAV mimicking or even causing test results to show unilateral loss. Does anyone remember this post?

Thanks for the explation. It just goes to show. Really is an impressive list of tests. I can well see how one could soon fill a 3 ring file. I’d have a real job getting copies of mine though. The only other test on the list I’ve had apart from the brain MRI, is a very detailed hearing test. My copies barely fill a plastic wallet and that’s including the brain scan DVD. I’ve only ever seen a rotary chair in an on-line video so for me they are about as elusive as Manatees I could say. Perhaps I should be grateful for not having had to have all those tests in a way. After all nobody’s ever had to chase me to try to pour water in my ears.

Having suffered the indignity of undergoing all those tests, did you receive a definite meaningful diagnosis and are you now well on the way to controlling things if I may ask such a personal question. I do hope so.

I’m surprised that you could be diagnosed without having the tests to rule out problems with the ears & vestibular system. I thought that vestibular migraine was a diagnosis that they only gave after ruling out other possibilities.

Ha, ha, I don’t think they do the rotary chair test much any more. When I had a bunch of those tests done in 2016, the doctor said that some of the newer tests are better than the rotary chair (which I had done in 1998) so they didn’t have a rotary chair as part of their test equipment.

Hmm… short answer is “no.”

Longer answer is that I just edited my post above to add in the years that I had the tests. I had some of them for the first time in 1998. Back then, I was told that I probably had “vestibular neuronitis.” So that’s what I assumed I had for the next 18 years. When I went to a new specialist in 2016, he looked skeptical when I told him that (and when he looked at my 1998 test results, which I had brought with me). He ordered a bunch of tests, some of the same that were done in 1998 plus more. After all of those, when I went in to see him and find out the results, he told me that my results were fine and that I don’t have a problem with my ears. He also said that my 1998 ENG results were fine and didn’t show vestibular neuronitis even back then! He went on to say that back then they didn’t know about “vestibular migraine,” which is a newer diagnosis. He then told me that I probably have vestibular migraine, in a sort of dismissive manner. He didn’t recommend any preventive medication because my episodes only occurred every month or two, and didn’t last that long, and told me to just take meclizine as needed when I had an episode.

My episodes continued and included much more violent rotational vertigo. Since that specialist had been rather dismissive, I sought out another specialist (one recommended by Dr. Hain, the US expert in Chicago) and saw him a few months ago. I had joined this forum and had read a ton of information on vestibular migraine and the first thing I told him was that I didn’t seem to fit into the vestibular migraine diagnosis. He agreed and said that he thought it was something neurological in origin but not VM.

So I made an appointment with a neurologist and did a ton more reading while I waited to see him. I stumbled upon something called “vestibular paroxysmia” which fit me better than anything else. When I saw the neurologist he agreed that it might be vestibular paroxysmia, so he is treating me for that and we are waiting to see whether my episodes stop.

I have hearing loss yet have still been given MAV diagnoses by some doctors.

It would be really interesting to take a group of patients (such as this forum’s members) and conduct a study where the patients are each sent to the same 10 “specialists” (neuro-otologists and ENTs) for a diagnosis, and to then compile the different diagnoses for each patient. It wouldn’t surprise me to see four or five different diagnoses given for the same person.


‘Mystery Shoppers’ for medics. That sounds fun. Can I play?

One stipulation. No clues. We wouldn’t let them have GP referrals. They would have to see us ‘blind’ so to speak. A real mystery for them.

Three different medics would come up with three different diagnoses for sure but could we just include neuro-otologists and neurologists. No ENTs. I really don’t rate ENT as specialists who could identify MAV if they saw it. That of course could be because I was most probably permanently psychologically damaged by the ENT who having listened to my MAV symptoms - it was still episodic at the time - snorted at me that they were nothing to do with my dizzy spells and that I shouldn’t be that ill with ‘what I had’. The GP had obviously recorded me as having BPPV a diagnosis the practice stuck with for about 10 years and ENT was twisting the symptoms to fit. I know there must be better ENTs but …

I just got copies this week to take to my upcoming Otolaryngology visit of my Caloric testing results from back in March with my ENT.
The ENT simply said back in March that I have “nerve damage”, nothing more nothing less and that it will go away on it’s own.
Well, after looking at my medical records this week I see I have 79% reduced vestibular response on my left side.
I was shocked by it… since the ENT was so flippant, I didn’t expect such a high percentage of loss. Additionaly, the ENT never offered that there were any medications to help… that didn’t come until months later and from my Ophthalmologist.

Woof! That is a huge difference side to side!

Sorry to say but you have to take with pinch of salt. In my mind that language is inappropriate and rather ‘catastrophic thinking’. Loss of audio or vestibular response in an ear can be the result of increased pressure. The inner ear is particularly prone and sensitive to increased pressure because it is set in bone which doesn’t ‘give’. I’ve seen the latest research on the anatomy of the ear and it suggests that pressures never gets high enough to damage the nerve. In addition it’s extremely well protected from pathogens. I don’t hide the fact that I believe the most likely cause of inner ear trouble is loss of homeostasis. That in itself will royally confuse the brain and lead to chronic dizziness and all the other joys. Such a condition is theoretically reversible if you can find the driver or the driver resolves on its own accord so don’t give up hope of a good recovery.

Since MAV I’ve ceased to take ENT’s seriously. There are no doubt excellent ENT’s, even one’s that recognise and can diagnose MAV I know, people on here have benefitted from their abilities. They have however proved to be out of my realm of experience. To date I’ve seen four, none of whom recognised MAV. I don’t even pretend to understand what’s meant by your ‘reduced vestibular response’ but I know MAV fluctuates considerably and imagine they’d probably have got a different result on another day so perhaps it’s not a meaningful figure. ‘Nerve damage’ will repair. Nerves regrow and reroute but it can take years. I’ve had personal experience from wisdom teeth extraction of that. Don’t worry too much about it. Put it down to experience. Last ENT I saw told me as I have a ‘funny’ eye (it shuts in bright sunshine) I shouldn’t expect to have good balance, ie should expect to be dizzy and there was nothing could be done about it. He also told me the pressure I was getting in my head was nothing to do with my dizziness either so I just moved on with my life as they say searching answers elsewhere. Helen

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Thank you James! Always nice to hear from you and the experiences / research you have done. It was off-putting and scary to see the large percentage in print but actually has made me more certain that when I see Dr Goebel on Dec 4th, that I will have a definitive answer to the various issues that are stemming from the vestibular system.