Otosclerosis for ~5 Years, Tinnitus Started ~2 Weeks Ago

[baz14600]

Hi, i'm Baz, 20 year old male from Australia.

I was diagnosed with otosclerosis in my right ear at age 14, which progressively worsened until around age 15-16 (resulting with about 80-90% hearing loss, other ear unaffected). I was given the options of hearing aids (which I found unpleasant), or to undergo a stapedotomy to hopefully restore my hearing. I chose neither, as I found my QOL to be relatively unaffected by otosclerosis.

Tinnitus has rarely been an issue for me, on the rare occasion it at most lasted a few hours, It hardly bothered my sleep and I'd wake up without it. Additionally, my ENT never raised the question of whether I had experienced it, and I had never reported it being an issue.

However, for approximately the past two weeks I have been experiencing a high pitch ringing in my affected ear. This begun during a night of high anxiety which I attribute to me stressing over an unrelated chest pain (which was a musculature issue and has now resolved). I should also mention I have never experienced anxiety until now. I believe for the first week the ringing came and went but for the past week it has been non-stop and is dramatically affecting my sleep and ability to function as normal.

I have made an appointment to see my ENT but this is not until late October, so for now I have been searching online for answers, but I am having difficulty finding anyone with a similar experience to me.

From what I have read it seems tinnitus caused by otosclerosis is experienced from early on, not 5-6 years later. Who knows, maybe I was lucky until now.

Right now i'm hoping that my hearing will perform another magic trick and I wake up without it, but the more I read about tinnitus the less optimistic I am.

Is there anyone on here with similar circumstances? I'd appreciate any help or advice, thanks.

 

[billie48]

Is there anyone on here with similar circumstances? I'd appreciate any help or advice, thanks.

Welcome to the forum. If you can't get a response from the limited readership here in introduction, you can try do a search on otosclerosis and you will see many prior discussions. Try also to read up on success stories as they will give you hope and strength plus knowledge to help you deal with the tinnitus. All the best. God bless.

 

[Matchbox]

If the bone degraded has become that severe and kept spreading, it may be starting to affect the cochlea which in turn leaches enzymes which destroy nerves connecting to hair cells, which is thought to be one of the biggest causes of tinnitus.

The stapedectomy would've stopped the spread if the stapes was the issue above the footplate.

But that can come with other problems.
I'd be doing fluoride or bisphosphate therapy imo, and try to get some sound in that ear (bone conduction headphones or hearing aid?)

If that's what's happening you need to try to arrest it. You can't stop the disease but you can greatly hinder its ability to degrade the bone, which may stop the release of further enzymes into your endolymph.

If it's a high pitched ringing I'd wager it's affected the basal turn first, and will only get worse if you don't treat it.

A bone conduction hearing test (Extended High Frequencies) to see where things are at since the last checkup you had to compare would be good confirmation.

 

[GregCA]

If the bone degraded has become that severe and kept spreading, it may be starting to affect the cochlea which in turn leaches enzymes which destroy nerves connecting to hair cells, which is thought to be one of the biggest causes of tinnitus.

This is interesting - I always thought it was the hair cells that the enzymes were toxic to. Is it possible that the hair cells are OK but the nerves are the ones damaged? Would that be synaptopathy similar to "hidden hearing loss"?

I'm in that same boat: as luck would have it, O damaged my cochlea and I got sensorineural losses in addition to conductive losses, and of course, intractable tinnitus.

My stapedotomy + fluoride seems to be helping a lot, as I haven't noticed any worsening since I did it 5 years ago. My hearing aid does help too, but the tinnitus is really difficult to deal with (it cuts through everything, literally everything).

 

[Matchbox]

This is interesting - I always thought it was the hair cells that the enzymes were toxic to. Is it possible that the hair cells are OK but the nerves are the ones damaged? Would that be synaptopathy similar to "hidden hearing loss"?

I'm in that same boat: as luck would have it, O damaged my cochlea and I got sensorineural losses in addition to conductive losses, and of course, intractable tinnitus.

My stapedotomy + fluoride seems to be helping a lot, as I haven't noticed any worsening since I did it 5 years ago. My hearing aid does help too, but the tinnitus is really difficult to deal with (it cuts through everything, literally everything).

They are proteases, and any bone remodelling the cochlea I'd assume is bad and would;

1) Sure kill hair cells
2) Also kill the nerve cells synapsing to them
3) Stiffen/harden the stria vascularis potentially if it became calcified, adding even more fun hearing woes like hydrops.

The only real evidence is it can eat away at cochlear bone, which is very very bad.
Stopping it asap is definitely the course of action if it hasn't migrated there yet.

My tinnitus doesn't sound like just ringing, it's a mess of random thumps, claps, a man singing "ahhhhh" in the wind/fans/white noise. Ringing is easy for me at this point.
Air bone gaps are 15-20 dB in lower frequencies, but normal hearing. Do I have otosclerosis or the beginnings? I have no idea, but I'd assume probably not as this is bilateral as well for me.

 

[ZFire]

They are proteases, and any bone remodelling the cochlea I'd assume is bad and would;

1) Sure kill hair cells
2) Also kill the nerve cells synapsing to them
3) Stiffen/harden the stria vascularis potentially if it became calcified, adding even more fun hearing woes like hydrops.

The only real evidence is it can eat away at cochlear bone, which is very very bad.
Stopping it asap is definitely the course of action if it hasn't migrated there yet.

My tinnitus doesn't sound like just ringing, it's a mess of random thumps, claps, a man singing "ahhhhh" in the wind/fans/white noise. Ringing is easy for me at this point.
Air bone gaps are 15-20 dB in lower frequencies, but normal hearing. Do I have otosclerosis or the beginnings? I have no idea, but I'd assume probably not as this is bilateral as well for me.

Holy crap. Your tinnitus sounds kinda similar to mine. It's indescribable.

In the last month, it has morphed and changed a lot. Lots of stuff going on. )t's a waaaahhh waaaahhh waaahh sound. When an ambulance siren comes nearby I swear that ahhh sound gets mixed into it. I get weird vibrating sensations when I lie down along with a pulsing whooshing/thumping sound. Also I have a humming sound too. Sounds like an electrical appliance running. Not sure what the deal is.

 

[Matchbox]

Holy crap. Your tinnitus sounds kinda similar to mine. It's indescribable.

In the last month, it has morphed and changed a lot. Lots of stuff going on. )t's a waaaahhh waaaahhh waaahh sound. When an ambulance siren comes nearby I swear that ahhh sound gets mixed into it. I get weird vibrating sensations when I lie down along with a pulsing whooshing/thumping sound. Also I have a humming sound too. Sounds like an electrical appliance running. Not sure what the deal is.

What kind of barotrauma did you have? I can't be sure why I got so bad so fast.

 

[ZFire]

What kind of barotrauma did you have? I can't be sure why I got so bad so fast.

Ear barotrauma.

I did the Valsalva maneuver multiple times while in a hot steamy shower until I started to feel some ear pain and my left ear became so clogged. It took a few moments to unclog itself. My voice become much louder briefly (felt like I had Patulous Eustachian Tube). It was a lot of discomfort for a short period of time. Like 10 to 15 minutes. I knew something was off with my left ear immediately after this incident (ringing became louder and reactive the next days.)

 

[baz14600]

Hi all, thanks for your responses.

So it's been roughly a month since this all begun. I am still waiting on an appointment with my ENT to discuss my issue and options.

When I made the original post the tinnitus was definitely at its worst (I would rate it about a 5/10, currently sitting at a 1-2/10).

I was given apo-betahistine by a GP to possibly help and since then the tinnitus has lessened and if I recall correctly I have had a few days here and there where I didn't notice any tinnitus.

There's been a few instances where I will hear some random sounds; like soft bell sounds (similar to sudden deafness that sometimes occurs). I am not sure if they have become more frequent than they were prior to the tinnitus. And I am not sure if they are something to be concerned of.

 

[baz14600]

If the bone degraded has become that severe and kept spreading, it may be starting to affect the cochlea which in turn leaches enzymes which destroy nerves connecting to hair cells, which is thought to be one of the biggest causes of tinnitus.

The stapedectomy would've stopped the spread if the stapes was the issue above the footplate.

But that can come with other problems.
I'd be doing fluoride or bisphosphate therapy imo, and try to get some sound in that ear (bone conduction headphones or hearing aid?)

If that's what's happening you need to try to arrest it. You can't stop the disease but you can greatly hinder its ability to degrade the bone, which may stop the release of further enzymes into your endolymph.

If it's a high pitched ringing I'd wager it's affected the basal turn first, and will only get worse if you don't treat it.

A bone conduction hearing test (Extended High Frequencies) to see where things are at since the last checkup you had to compare would be good confirmation.

Hey, thanks for the response.

Still yet to see my ENT, but from all prior appointments I was always told my condition had maximally progressed and can be left untreated as I was fine to live with it. Is it a rare case for the condition to affect the cochlea?

It is a high pitch ringing, and came on very suddenly (and was quite loud). Since then it has gotten much better and if I recall correctly some days it has gone unnoticed by me. So I am not sure what to make of all this.

When it did first occur I had recently had a flu, muscular chest pain and bad allergies/asthma (I am severely allergic to dust mites). This has all improved alongside my tinnitus so I am not sure whether they could have aggravated it.

I've never heard of those therapies you mentioned but I'll definitely be asking about it @ next appointment.

I should add, along with my tinnitus seeming to have improved, in the presence of some sounds it does seem to louden slightly. If I cover my ears and try to focus on it, it seems to be quieter and becomes basically unnoticeable. Is this the case for anyone else?

Thanks so much.

 

[baz14600]

Update for anyone that may read this.

I had about a week of silence (occasional slight fizzing sounds).

8/9 - Tinnitus returned at night and is still present but is quietening slowly. This is the second time this has occurred since the initial onset. Not sure what to make of it. The previous times it faded into a fizzing sound & then was practically unnoticeable within a week, hoping this is the case again.

The day after I had a very loud burst of fleeting tinnitus (sounded like a video game flash bang) that faded quickly. Had no tinnitus for about 2-3 hours after it faded. Had a bit of ringing at night and struggled to fall asleep.

Still waiting for ENT appointment!

 

[baz14600]

The high pitch ringing has been gone for about a week now. Sometimes getting some soft white noise sounds.

Past 2 days a low pitch droning sound comes on and off, not very loud but it is annoying. I don't hear it for a few minutes after listening to music or louder sounds.

Last night had bad ear fullness in both ears, felt like my ears were going to burst, never had anything like this before.

 

[baz14600]

After seeing my ENT the cause is still somewhat unclear to both of us as I have had otosclerosis for years without tinnitus & no changes in hearing since before tinnitus.

Also my tinnitus volume/sound has improved a lot over the past few months (I have had many quiet/silent days), but still many days annoys me.

I've only recently realised that pressing parts on the right side of my head, such as above my ear (temporalis muscle?) and around my jaw causes tinnitus and the loudness increases with force. Also biting causes this too. This doesn't happen on my left side only right (side with tinnitus). I grind my teeth when sleeping since young & have wisdom teeth needing removal. Could this be possible case of TMJ dysfunction/tight facial muscles causing tinnitus? Has anyone else experienced this?

I have had hearing test checkup, no changes in hearing since before tinnitus started. I have also seen dentist about this issue & having wisdom teeth out next month.