Vestibulocochlear Dysfunction, Dizziness, General Unsteadiness

[stev3po]

Hello all,

Been having tinnitus since February in my right ear (and sometimes I notice it slightly in left). It fluctuates from a cricket noise to a solid high pitch tone, with the tone varying in intensity. I first noticed it after using a netipot in December with a sinus infection. Felt like I had water in my ear. The tinnitus went away after a couple days, but on February 2nd, it came back and I started feeling the dizziness. It pretty much hasn't stopped or improved since. I saw an ENT and he originally diagnosed Otosclerosis (via Weber test, no imaging) with minimal conductive hearing loss on the affected (right) side, but no sensorineural loss. Got an eye exam and I have 100% healthy eyes, 20/20. But after calling him again he mentioned the dizziness might be a vestibulocochlear deficit. It seems like what little I can find on this condition matches my symptoms, which are:

General feeling of dizziness/slightly imbalanced
Ringing mostly in right ear (cricket noise + sharp ringing)
Discomfort when focusing far away
Discomfort looking around when walking around outside
When reading text sometimes appears to be jumping, vibrating, buzzing or just cloudy
Made worse by quick head movements
Eyes are sensitive to light
Looking down when walking seems to help
Seems to be less aggravating in the evening (less light?)
Caffeine seems to aggravate it, but only sometimes
Chest tightness and palpitations sometimes, worse at night or when I just wake up
Acid Reflux

Anyone have experience with this? I don't think it's Meniere's disease because I don't describe it as spinning or vertigo, and I don't have fullness in the ear, although I did at the onset with the sinus infection. I've been on prednisone for the past day or two and I'm not sure it's helping.

I'm hoping to get into a balance lab per the ENT suggestion and get testing and potentially vestibular rehab, but those are all closed due to the corona virus. Any help, experience, support, or thoughts are all welcome!!

Thank you all for fighting. It's been harder being locked at home due to COVID-19 and not being able to progress. I've felt mega depression and anxiety which is not making it better.

-Steve

 

[FGG]

Definitely get the VNG when you can, it will tell you a lot.

I have vestibular disease (full vertigo attacks but also had some of the strange visual signs you have) and what has helped me significantly is Acyclovir (it helped so much that dizziness is the very least of my problems now). I have sky high EBV titers and I am sure it's related to my "vestibular migraines" at this point since the anti-viral therapy was so effective.

The Acyclovir (which I still take but at a lower dose) also helped my anxiety quite a bit. I'm not saying it will help yours (or any of your symptoms) but it might be worth looking into.

It didn't help my hearing issues/tinnitus but those are completely unrelated in my case (and possibly in yours if you have otosclerosis), anyway.

Hang in there, especially with the added Covid-related social isolation.

 

[stev3po]

and what has helped me significantly is Acyclovir

Thanks for the reply! appreciate your support.

Looks like that antiviral might help, I'll look in to that. Could that mean it's a herpes related irritation of the vestibulocochlear nerve? Did you get a prescription from your ENT doc or primary care? And if you stop taking it, do the symptoms return?

I'll push for a VNG as well.

Thanks again!

steve

 

[FGG]

Thanks for the reply! appreciate your support.

Looks like that antiviral might help, I'll look in to that. Could that mean it's a herpes related irritation of the vestibulocochlear nerve? Did you get a prescription from your ENT doc or primary care? And if you stop taking it, do the symptoms return?

I'll push for a VNG as well.

Thanks again!

steve

In my case, I believe nerve irritation was a factor. I do have permanent vestibular loss on my right side (this is where a VNG will help diagnostically--the water version is much less loud than air for this test if you have noise sensitivity).

I haven't stopped taking it because I am afraid they might return. I'm only taking it 1-2 times daily now, however. Please keep in mind i have no idea if this is relevant to you but it rarely is brought up by ENTs and is overlooked as a cause imo.

My ENT gave me a prescription to trial treat with when I wouldn't let up but your mileage/degree of annoying you are willing to get may vary.

Good luck, keep us posted!