Trying to Understand Tinnitus/Meniere's Diagnosis

[BarbaraZ]

I've had tinnitus a long time--those long-ago concerts, don't you know? I also had an ear infection in December 2017 that caused major hearing loss in my left ear that my ENT doc now says is Meniere's disease, based on two audiograms a year apart. I'm not convinced--I don't have the vertigo and dizziness that's supposed to be characteristic--but it's definitely something.

Furthermore, I'm using tooth aligners right now, and they seem to create an intermittent loud tinnitus tone all their own. I hope that goes away when we're done with it. All in all, there's a lot of nerve action on the left side of my head.

I'm a musician (choral singer), and the new deafness and hollowness is devastating, more than the tinnitus. Music sounds awful. I only have metaphorical descriptions ("sounds like a rusty nail") for what I hear and that's frustrating too.

I'm here in these forums trying to understand what has happened and what I can do. I have a consultation with an audiologist in an hour about hearing devices and there's so much I need to know.

Looking forward to learning how to control this,
Barbara

 

[Contrast]

How do you know loud music did not contribute to this as well. Did they verify it was an ear infection or did they just guess?

The first thing you need to realize is all science related to the inner ear is primitive and has a long way to go. Scientists do not have a way to biopsy the inner ear, the methods they use today to determine hearing problems are mediocre at best.

 

[Ken219]

Meniere's disease

Meniere's disease has a long list of symptoms so it might be used as a catch all. Don't get hung up on what he called it. Good luck and G-D bless.

 

[Contrast]

Furthermore the mechanisms of Meniere's and cochlear infections and even noise induced hearing damage are not well understood. ENT's job priority is to sell hearing aids, that's the entire business. It's too much work to figure out how the cochlea actually works, let alone the bio-medical fantasy of repairing a damaged ear. Scientific inquiry ends where profit from selling hearing aids begins. The entire field of research is stagnant because of this.

There's little doctors can do for inner ear problems, it's common to be diagnosed incorrectly. You need to be in the mindset that all modern medicine for treating the inner ear is in the dark ages.

 

[BarbaraZ]

Now I've been to the audiologist. To answer some questions:
- Several different things happened between December 2017 and March 2018 that affected my left ear. One was a head-cold sort of virus that developed into an ear problem, and yes, I saw regular and ENT docs about that. My subjective experience was progressive hearing loss on the left side starting in December 2017, and it's not just loss--it's a lot of distortion. Another was a cracked molar on the left side and an implant in place of my back left molar.
- I've had no additional loud music in decades, so any contribution from that would have been from past exposure.
- The audiologist today refines the diagnosis from Meniere's to "endolymphatic hydros"--I'm gathering these are all variations on a theme of "beats us" and I haven't been home long enough to research it yet.

At any rate, I do need some sort of hearing compensation in addition to anything I do about the tinnitus. For it, he said that cognitive behavioral therapy can be helpful but pretty much left me on my own to find ways to ignore it.

Thanks for your info and support, I'm looking forward to learning more from everyone here.
Barbara

 

[GregCA]

- The audiologist today refines the diagnosis from Meniere's to "endolymphatic hydros"--I'm gathering these are all variations on a theme of "beats us" and I haven't been home long enough to research it yet.

That makes more sense to me. I've never seen Meniere's being diagnosed without vestibular symptoms. Note: they're hydrops, not hydros.

Are you able and willing to post your audiogram here? (you can blank out any personal info)

 

[BarbaraZ]

Yes, I can, I'll have to scan it. I was reviewing my notes about the history. I was complaining to my primary doc about my ear 10 days after the onset of the cold/virus, before Christmas 2017. I did antibiotics, Prednisone, I had an MRI in Dec. 2018, all that.

I have two audiograms a year apart, do you want to see both?

 

[GregCA]

Yes, I can, I'll have to scan it. I was reviewing my notes about the history. I was complaining to my primary doc about my ear 10 days after the onset of the cold/virus, before Christmas 2017. I did antibiotics, Prednisone, I had an MRI in Dec. 2018, all that.

I have two audiograms a year apart, do you want to see both?

Sure, it won't hurt to have them both.

 

[BarbaraZ]

The April 2019 audiogram has a comparison to last year so I'm only posting one. The curve for the left ear last year looked more like the right ear.

They tell me the "uncomfortable" feeling noted on the chart is hyperacusis. I wear an earplug in my left ear quite a bit because the sound pressure of ambient life is uncomfortable--take it out when I'm in quieter places. I'm still working on what frequencies are worst.

I think I have at least 3 different syndromes or actions going on: tinnitus, hearing loss whether age-related or virus-related, and the endolymphatic hydrops or Meniere's syndrome which includes the hyperacusis and hearing fluctuation (I haven't heard that yet).

 

[GregCA]

I think I have at least 3 different syndromes or actions going on: tinnitus, hearing loss whether age-related or virus-related, and the endolymphatic hydrops or Meniere's syndrome which includes the hyperacusis and hearing fluctuation (I haven't heard that yet).

Are you on the "no good stuff diet"? ie no caffeine, sugar, alcohol, salt...
It was suggested to me when I was diagnosed with hydrops (which was a misdiagnosis, but we didn't know at the time).

 

[BarbaraZ]

She mentioned two things. One was lower sodium, and I quizzed her about alcohol, cannabis, other foods. She said anti-anxiety meds might be useful. I read somewhere that Xanax is what's been tested.