I hope you don’t mind if I raise a query regarding ears and VM.
As already posted, my journey started last Nov with a bad bout of vestibular neuritis. When I was still feeling dizzy several weeks later, my doctor referred me to an ENT consultant. He did a hearing test (normal), Dix Hallpike test to check for BPPV (normal) and could only attribute my ongoing balance problem back then as ‘Unilateral Vestibular Hypofunction’ which I understood to be some form of damage to the one ear that had started this chain of events. He was the one who ordered an MRI scan (normal) and told me to carry on as best as I could because this would help with the compensation process.
Fast forward to Aug this year and I then saw an audiologist as I was still 24/7 dizzy with recurrent vertigo. Based upon the caloric testing I had, both ears produced abnormally high percentage responses. From this he could rule out that I had no inner ear damage and also ruled out Meniere’s disease. The Dix Hallpike test was conducted again and proved negative. Therefore, the audiologist concluded that although not strictly diagnostic, such abnormally high responses are usually consistent with vestibular migraine - hence my diagnosis. My appointment ran over time so I wasn’t able to ask anything further. It was a private appointment that I saved hard for so I cannot afford to go back for a second visit any time soon.
However, my question revolves around the issue of just what exactly an ‘abnormally high response’ refers to (if you are being told your ears are technically fine) and whether anyone else has experienced similar abnormally high responses if they had caloric testing? To add to the confusion, I continue to have very high frequency, permanent tinnitus (the sound runs across both ears) which momentarily cuts out from time to time. Additionally, on several occasions I have had a sudden drop in sound from either ear (a bit like a pressure sensation) that lasts anywhere from 5-10 seconds that scares me half to death because I don’t know what is going on. It sometimes sounds like the whole environment I’m in changes momentarily but when I ask others if they have experienced it, it’s always a negative response. I don’t remember having these things before I was ill last November but when they happen, and they happen often, I get extremely anxious.
Any info (no matter how big or small) would be appreciated.
Well that’s sometimes difficult to judge for some simply because you might be getting better anyway.
In any case I don’t believe ‘VM’ is an aetiology, it’s a diagnosis and simply maps symptoms to a title and a treatment protocol. I simply don’t believe we have the full resolution to conclude much more.
I had multiple different diagnoses from 4 different doctors and whilst my first diagnosed me with MAV (in some ways reasonable as had all the same symptoms), my subsequent doctors added the possibility I had a ‘degree of hydrops’ and finally that I was effectively recovering from a PLF. The last one made more sense to me as my journey started with trauma to my ear. I’m not the only MAVer who’s had a suspected PLF and Secondary Hydrops. @suki530 also had the same suspicion but like me had identical symptoms to MAV and interestingly a very similar natural history. She got better (if still not completely symptom free as tinnitus remained) and came off meds in a similar timeline of 3 to 4 years.
In any case the treatment is not likely to vary as most doctors prefer to treat conservatively (with drugs).
If it is your ear then hopefully you will heal and being able to get off the drugs at some point. Ears are well known to take years to settle.
There’s very little point arguing about PLFs as there appears to be very little objective evidence, no large sets of documented definite PLF sufferers (and definitely healthy controls) and therefore hard to do all the appropriate epidemiology to draw conclusions about symptom patterns, natural history and optimal treatment.
No one has ever looked at my oval window!
Anyway, back to OP.
@Allyson I’m not suggesting for a moment you have a PLF (and we are not qualified nor here to diagnose - only doctors can do that). Moreover spontaneous PLF in both ears is apparently inconceivable (which makes sense!)
Was just using myself and another sufferer as an example to illustrate that it is possible that ear trouble can turn out looking like MAV. (Another example is @Carriep)
If you are concerned get some additional opinions.
The good news is that if it is ear trouble then it may calm down by itself but apparently takes significant time and you have to be incredibly patient (and then some!)
I have tinnitus constantly in my bad ear. I feel for you.
Agree entirely. Must be less Likely than being struck by lightning I’d imagine. Surely if one ear experiences some sort of trauma, that can cause an asymmetry which in itself could cause a sense if imbalance, ie dizziness, vertigo etc. If both ears are affected and it’s not diagnosed as Menieres then something, somewhere else, either more central (from the brain, ie migraine) or something that’s universal throughout the entire body, ie blood flow, oxygen levels or something that affects metabolism maybe, is more likely the culprit.
I wouldn’t worry too much about unexplained technicalities from the tests you had. Sounds it was pretty comprehensive to me and I’m sure they’d have referred you on if really necessary. All I ever had ear-wise was an audiogram on one occasion which ruled out Menieres I was told, and a hearing test, with a tuning fork on another. Never even heard of ‘calorific testing’. It’s rarely used in UK these days I’ve since been told,
I agree with @GetBetter. Try it and see. If the migraine preventative protocol works, you’re laughing without spending cash you don’t have. If not you’ll need to think again. Tinnitus can be very persistent. I find mine has got to be a strong indicator of current state of balance almost as a barometer indicates weather. Mine came, in both ears incidentally, with the vertigo attacks and eventually (one of the last symptoms to leave almost) left presumable controlled by the medication. Now it just pops up And buzzes, in one ear, like a wasp when you knock the jam pot, or rather the balance, a bit hard. Helen
Many thanks everyone for the responses - that puts my mind a little more to rest.
I have a long awaited neurology appointment at the end of this week and I will be going armed with questions. Reading through many of the comments around this website has been truly helpful and means I can go along with much more confidence and knowledge of VM than I had a few months ago. I’ll let you know how I get on.
Wow, all I can say is that I have the same experience except I did not get any further audiology testing beyond the initial test that determined my left ear has 40% reduction in signal to the brain. I have all the same ear symptoms you do.