Struggling to Rehabituate — Could Use Some Support

[Athens]

Yes exactly! Does anyone know where this may come from? Despite "normal" audiograms up to 16 kHz I just found out I've been reading my OAEs wrong and there's some damage there. Is this that cochlear synaptopathy I keep reading about? Damaged or bent sensory hair cells that cause this reactivity?

I have had hyperacusis for sixteen (16) months and have used sound therapy with above the ear sound generators for six (6) months.

I have wondered if the sound generators are aggravating my symptoms because I seem to be getting worse. I have started protecting a bit more.

My tinnitus is reactive but many people believe that reactive tinnitus and hyperacusis are the same thing.

My audiologist wants me to continue with the sound generators but I basically have them set at the lowest possible volume (which is audible in a very quiet room). He admits that the counseling part of TRT is more important than the sound therapy. I have found his counseling to be woefully inadequate. I think that the counseling part of TRT can be done in one session.

 

[Exit]

To be honest I think reactivity is just an annoying form of tinnitus and not very much linked to hyperacusis. This from personal experience, and also how people here without hyperacusis have got reactive tinnitus as well.

I think it's sadly something invented by audiologists/ENTs because then they can "treat" that as well... :/

 

[kingsfan]

@IntotheBlue03, I had an OAE test, and they found something in the 4 kHz-8 kHz range. My audiologist said that this this can just happen with age - i.e. losing outer hair cells, so it is not definitive of anything.

How did yours read?

Otoacoustic Emissions test felt too loud when I had it. I fear it could worsen people.

 

[IntotheBlue03]

@IntotheBlue03, I had an OAE test, and they found something in the 4 kHz-8 kHz range. My audiologist said that this this can just happen with age - i.e. losing outer hair cells, so it is not definitive of anything.

How did yours read?

Hey @Uklawyer, that's interesting and good to know. Apparently I have 2 conflicting OAEs (I honestly don't know how reliable these tests are) and a very kind audiologist I've been conversing with pointed this out since I'm still learning how to read them but I will post the most recent one here if you care to lend your expertise.

It looks like losses at 5-8 kHz on the Right and losses at 4.5-8 kHz on the Left but not sure how to interpret that further.

I do know after multiple audiograms and the ultra high frequency audiogram I had that my "hearing loss" begins at 14-16 kHz, which is exactly where my tinnitus pitch is.

 

[IntotheBlue03]

To be honest I think reactivity is just an annoying form of tinnitus and not very much linked to hyperacusis. This from personal experience, and also how people here without hyperacusis have got reactive tinnitus as well.

I think it's sadly something invented by audiologists/ENTs because then they can "treat" that as well... :/

Thanks @Exit, I agree because my tinnitus reactivity occurs regardless of sound sensitivity and only lasts as long as the increased sound around me does. My "hyperacusis" is really specific and not related to all loud sounds and not painful. I just hope there's a better ratio of people on here getting better with tinnitus reactivity than I seem to be finding.

 

[Exit]

Thanks @Exit, I agree because my tinnitus reactivity occurs regardless of sound sensitivity and only lasts as long as the increased sound around me does. My "hyperacusis" is really specific and not related to all loud sounds and not painful. I just hope there's a better ratio of people on here getting better with tinnitus reactivity than I seem to be finding.

Too tired to check out your story, but on month 5 my reactivity was almost non-existent.

Side note: hyperacusis was through the roof at that point.

One loud shit outside and all came back with a vengeance...

 

[IntotheBlue03]

Too tired to check out your story, but on month 5 my reactivity was almost non-existent.

Side note: hyperacusis was through the roof at that point.

One loud shit outside and all came back with a vengeance...

So tinnitus reactivity came back as well?

Sorry to hear that!

 

[Wrfortiscue]

Too tired to check out your story, but on month 5 my reactivity was almost non-existent.

Side note: hyperacusis was through the roof at that point.

One loud shit outside and all came back with a vengeance...

My spikes to loud noises have calmed down but reactivity to frequency has not gotten better. Just kinda getting used to the annoying squeal lol.

 

[DebInAustralia]

My spikes to loud noises have calmed down but reactivity to frequency has not gotten better. Just kinda getting used to the annoying squeal lol.

I love the *lol* at the end of your posts... always makes me smile.

 

[MindOverMatter]

To be honest I think reactivity is just an annoying form of tinnitus and not very much linked to hyperacusis. This from personal experience, and also how people here without hyperacusis have got reactive tinnitus as well.

I think it's sadly something invented by audiologists/ENTs because then they can "treat" that as well... :/

Everyone is entitled to have their own opinion, but I would have to personally disagree to this as my experience is different. Once the hyperacusis slowly started to ease off, the reactivity became less. So in my experience it all connects closely. And I do not believe at all that it is something "invented" by anyone.

Most experts on the field I've spoken to argues that reactivity is a subset of hyperacusis.

 

[Exit]

So tinnitus reactivity came back as well?

Sorry to hear that!

Yes, that screechy shit over everything I do or hear was my only really awful thing in the first place. It came back gradually over the first night and after that the normal tinnitus spread to the other ear along with more tinnitus sounds. Up at 13 sounds now...

So don't listen to people saying everyday noise is good for you, because everyday noise outdoors is sometimes not tolerable to us and that could be the difference between a success story and an eternity of torment.

Especially in the first year people should do what they can, instead of listening to lousy ENTs that look at you like you're a nutcase...

 

[MindOverMatter]

So don't listen to people saying everyday noise is good for you, because everyday noise outdoors is sometimes not tolerable to us and that could be the difference between a success story and an eternity of torment.

Well, there is a fine balance here, and that advice is very generalizing as every case and individual is different - and we also respond in different ways. In the end, only one each individual would know what works out best for them. Or what they feel is within their limits.

My experience is different to yours, but then again - it is hopeless to compare because the matter of subjectivity in this outplays a huge role.

The main goal would be to get better though, for everyone - and there are many ways to Rome.

 

[Exit]

Well, there is a fine balance here, and that advice is very generalizing as every case and individual is different - and we also respond in different ways. In the end, only one each individual would know what works out best for them. Or what they feel is within their limits.

My experience is different to yours, but then again - it is hopeless to compare because the matter of subjectivity in this outplays a huge role.

The main goal would be to get better though, for everyone - and there are many ways to Rome.

True but I think we can agree that noise above 70 dB is unnecessary and for some people it will be too much.

So the only reason to recommend people to go "live life" is because any professional will be in for a shit storm if they were to say anything else.

 

[MindOverMatter]

@Exit, if your threshold is 70 dB, I would agree to that you should be careful to expose yourself too much for some time with sound levels above this.

Until you may be able to increase your sound tolerance level at one point.

 

[Uklawyer]

Hi @IntotheBlue03. I am not an expert on OAEs I'm afraid. I did try to look at this a bit last night when I woke up in the night, but was too tired to absorb it. You would, I believe, expect the higher frequencies (4 kHz-8 kHz) to be the ones showing problems in the OAEs, as we lose those as we age in any event. So an OAE test that shows OHCs with abnormal response or no response at the higher frequencies is nothing astounding. I think it suggests that there may be some measure of hearing loss that might have not been picked up on an audiogram, but it could be normal age-related deterioration - and it does not necessarily explain the tinnitus.

I'll let you if I manage to understand anything more.

Good to know there is no issue with the ABR.

 

[Aspen.c]

How are you doing now? Sounds almost exactly like what I'm going through.