Researcher Told Me Reactive Tinnitus Is Not Hyperacusis

[Contrast]

Is that the same thing as NIHL?

no it's like waking up one day half deaf

 

[Tinker Bell]

My ENT and Au


You are correct. Researchers, doctors, ENTs, audiologists are like vampires/vultures when a person is sick they dont come to help but to make them more miserable.


Is that the same thing as NIHL?

No. SSHL — sometimes called sudden deafness — is sudden hearing loss usually in one ear in less than 72 hours. The loss is at least 30dB and the cause is often unknown.

For me, it was one moment I could hear and the next moment I was wondering why my house was so quiet with a high pitch noise.

 

[dpdx]

No. SSHL — sometimes called sudden deafness — is sudden hearing loss usually in one ear in less than 72 hours. The loss is at least 30dB and the cause is often unknown.

For me, it was one moment I could hear and the next moment I was wondering why my house was so quiet with a high pitch noise.

Oh wow. So SSHL stands for sensirouianal hearing loss? I dont know If I spelled that right.
Sorry for being ignorant about not knowing the difference between NIHL and SSHL.

 

[Contrast]

@attheedgeofscience
Can you please read my post about why I disagree with the existence of semi-peripheral tinnitus and help me understand if I'm missing something in this thread, Or if you missed something.

https://www.tinnitustalk.com/threads/neurogenesis-and-neuroplasticity-its-not-all-its-cracked-up-to-be.29400/

 

[Tinker Bell]

Oh wow. So SSHL stands for sensirouianal hearing loss? I dont know If I spelled that right.
Sorry for being ignorant about not knowing the difference between NIHL and SSHL.

Yes, and I always misspell that word.

Not knowing about it is okay! Most people are not fully aware of, research or speak to specialists about conditions they have not personally experienced. For example, if I had only experienced loudness hyperacusis then I certainly would not be knowledgeable about what it is like to personally experience reactive tinnitus.

 

[Contrast]

I subscribe to the idea that blocking NMDA receptors can prevent tinnitus (and more hearing loss)
but not that hyper activity in the audiotory nerve is tinnitus. That is what I am disagreeing with.

Less input from the audiotory nerve causes tinnitus generation in the DCN?
yet Auris medical is saying hyperactivity in the audiotory nerve!

someone has to be wrong.

 

[Samir]

Interesting discussion.

All I know is that we know almost nothing.

We are walking through a dark room with only the sense of touch to rely on. Reality may be something very different from what we imagine it to be.

I don't think it's wrong to have a few different conceptual ideas about tinnitus and hyperacusis. All ideas are welcome of course. Even ones that don't start off in a lab but on an web forum. They can serve as starting points to new discoveries. But by principle, it's wrong to use these conceptual ideas as our guide through the dark, without any solid evidence. That way, we could be going in circles for many millenniums to come. It's making a model fit the reality. That's science in reverse.

I also subscribe to the argument that many of these terms that relate to tinnitus and hyperacusis are brought to life during debates and discussions, not too unlike the discussions we are having here right now.

It's okay to think far and wide. We need discussions, opinions and ideas. We need open discussions about things. But we have to stay objective if we want to keep things scientific. Otherwise it's merely philosophy.

What we could really use is more research funding, doing the really hard work of science, and putting many of these ideas to the test.

 

[Layla23]

@Tinker Bell no. He didn't know how to treat reactive tinnitus. I appreciated his honesty. So zero treatments were offered.

I had been spending all of my time looking for "hyperacusis" treatments so that's why I decided to post on here. Because maybe I had been looking in the wrong spots for treatment...




Despite the pain, the discomfort, the anxiety, the loss of my active 23 year old lifestyle/self...to me the worst part has been not being taken seriously by my family or doctors. I haven't spoken to my sister in 6 months because of all of this.


So anyway I hope if anyone reading this has reactive T please feel free to reach out to me. Your symptoms are real. Don't let people tell you otherwise. Even if they are loved ones.

As far as the answer....I don't know. I'm not a doctor. I won't pretend for a second I know the answer because I don't. But I do know reactive T is real. And awful.

 

[Samir]

Do not be fooled by so-called Researches that write reports using technical language to impress. The majority of these people have never experienced tinnitus or hyperacusis and therefore no nothing about these conditions.

That's not my impression of the matter at all. On contrary, what I learned in my investigations is that many of these "so called researchers" do in fact have these conditions themselves. I don't know about Bryan Pollard, but many of them do have these conditions. Let me recall a few names... let's see now...

Christopher Cederroth has tinnitus...
Daniel Polley has tinnitus...
Josef Rauschecker has tinnitus...

And you know who else? Susan Shore has tinnitus! I learned this only recently, I heard her say it herself in of the videos.

If you do a survey on these so called researchers, I think what you will find is that the majority of them either have the condition (tinnitus) or know someone close to them who has it. For some of them this has been the reason why they became researchers.

 

[Contrast]

look into Susan Shore's device and a similar device that researchers in Minnesota are doing
as well as hearing loss restoration.

Reactive tinnitus will be treated the same as "normal tinnitus"
and normal tinnitus is n't normal because most individuals have very unique issues with tinnitus.

Mine reacts to soft low pitch noises but music drowns it out completely.

 

[Contrast]

i'll hear a knock from downstairs and then a faint "ZEEEEEEEEEE" in my head

 

[EDogg]

Hi @Layla23

Thank you for raising this topic of discussion and I am sorry to hear of your struggles with these challenges. I, too, have the "terrible triad" of severe hyperacusis, sound reactive tinnitus and ear pain, bilateral, for just over a year now. You are doing the right thing by investigating, asking questions, raising discussion, and learning all you can about this. Although there may not be a lot written on these conditions, you can empower yourself by understanding what is known and what can be done about it.

As pointed out, no one really knows the answer as to what this phenomenon of "reactive tinnitus" is, and part of that is due to the lack of a pure definition. I see it as a dynamic, unmaskable presentation of tinnitus that overlays instantaneously on external sounds. Mine is worsened particularly by static high pitch sounds like fans. More dynamic sounds seem to "confuse" the brain and lessen its impact. Nonetheless, from my personal experience, what I qualify as "reactive tinnitus" is closely tied to the hip with the severity of my hyperacusis. Meaning, when my hyperacusis is worse (threshold lower) the reactive tinnitus is also more intense, and vice versa. I believe the reactive tinnitus, at least in my case, is indeed tinnitus that is modulated by accompanying hyperacusis. This can further be supported by the experiences I have read of other folks dealing with this. It seems, from these accounts, that by desensitizing the hyperacusis, the "reactive tinnitus" also follows suit and eventually becomes a non-issue. This is my goal, and perhaps you may find this information helpful as well. The barrier to desensitization for me right now is the ear pain, which I am in the process of finding ways to lessen with medication and seeking advice from experienced neuro-otologists and audiologists.

Again, appreciate you raising this discussion and hope you find a treatment strategy that works for you.

Best,
EDogg

 

[1000]

Hi @Layla23

Thank you for raising this topic of discussion and I am sorry to hear of your struggles with these challenges. I, too, have the "terrible triad" of severe hyperacusis, sound reactive tinnitus and ear pain, bilateral, for just over a year now. You are doing the right thing by investigating, asking questions, raising discussion, and learning all you can about this. Although there may not be a lot written on these conditions, you can empower yourself by understanding what is known and what can be done about it.

As pointed out, no one really knows the answer as to what this phenomenon of "reactive tinnitus" is, and part of that is due to the lack of a pure definition. I see it as a dynamic, unmaskable presentation of tinnitus that overlays instantaneously on external sounds. Mine is worsened particularly by static high pitch sounds like fans. More dynamic sounds seem to "confuse" the brain and lessen its impact. Nonetheless, from my personal experience, what I qualify as "reactive tinnitus" is closely tied to the hip with the severity of my hyperacusis. Meaning, when my hyperacusis is worse (threshold lower) the reactive tinnitus is also more intense, and vice versa. I believe the reactive tinnitus, at least in my case, is indeed tinnitus that is modulated by accompanying hyperacusis. This can further be supported by the experiences I have read of other folks dealing with this. It seems, from these accounts, that by desensitizing the hyperacusis, the "reactive tinnitus" also follows suit and eventually becomes a non-issue. This is my goal, and perhaps you may find this information helpful as well. The barrier to desensitization for me right now is the ear pain, which I am in the process of finding ways to lessen with medication and seeking advice from experienced neuro-otologists and audiologists.

Again, appreciate you raising this discussion and hope you find a treatment strategy that works for you.

Best,
EDogg

@EDogg you never tried the rob music therapy? Or what you think of it?

 

[robHing]

As far as the answer....I don't know. I'm not a doctor. I won't pretend for a second I know the answer because I don't. But I do know reactive T is real. And awful.

I totally agree.
It spikes us (who have reactive T) easily !
Feeling like being pushed to the edge of abyss.

 

[EDogg]

Hi @1000

I am assuming you are referring to Rob's music protocol for decreased sound tolerance? I have tried it but unfortunately had to stop about a month in due to ear pain. The pain was not likely caused by the protocol, but made it uncomfortable to proceed forward. I enjoyed starting to "re-listen" to music, though, and I think the protocol has been helpful for a number of people with ear pain and hyperacusis. I think part of the healing process, once you've had hyperacusis for a while, is re-establishing a positive experience with sound. This protocol is built to help with that, though there are probably many other ways to go about it. I am not sure it will be helpful for me, at this moment, but may be useful once I get the ear pain issue under wraps.

Best,
EDogg

 

[brownbear]

You know you've habituated when you find some of the 'veteran's' posts more annoying than your tinnitus.

 

[Tinniger]

Nobody seems to know exactly what hyperacusis is and if or how it differs from reactive tinnitus.

Hyperacusis is often described as aversion and pain to loud noises.

For example, I don't mind short noises such as clattering dishes or a slamming door. But I go mad from a vacuum cleaner in the next room. Because it makes a noise in my left ear that doesn't belong there and just sounds horrible.

That doesn't seem to be hyperacusis, because measured in decibels, the vacuum cleaner in the neighbouring room doesn't seem to be ultraloud. And the much louder crockery does not bother at all, because there is no continuous noise.

 

[Layla23]

@Tinniger

Same thing happens to me. Except mainly from my roommates hair dryer

 

[Ed209]

You know you've habituated when you find some of the 'veteran's' posts more annoying than your tinnitus.

How are you doing nowadays, brownbear. You feeling any better?

 

[brownbear]

I'm good thanks Ed. Largely back to my normal self. Enjoying life again. How are you?

 

[Ed209]

I'm good thanks Ed. Largely back to my normal self. Enjoying life again. How are you?

Same mate. I found it quite remarkable that my brain has adapted to largely accept the noise in my head. To go from the suicidal hole I was in to where I am now is quite a significant leap.

I'm glad to hear you're doing well.

 

[Bazan]

@brownbear this is so good to hear i am 9/ 10 months in and still struggling to a lesser extent, you very kindly spoke to me on the phone in my darkest hours, glad to see have got better...

 

[shasta0863]

What about tinnitus that winds up type of reactive? As in, after receiving some noise from a smoke detector and starting work which has put me more in a noisy environment than I'm used to (take last 2+ years of being home mostly and occasionally going to park, store etc.) my tinnitus has completely shifted to a suicidal level that will not get better after 6 months.

The tinnitus now took another existing tone (I think) and has made it sharper and higher pitch instead of the static it used to have. At a baseline, aka quiet, this tone jumps up and then back, then up, then back. Anytime I subject myself to noises that engulf an area, like an A.C, standing outside, even low dripping of the faucet, this same tone winds up and starts doing what it does in the quiet, but INCREASED. It amplifies and competes with these noises.

This has killed me, severely. I was praying to god this was hyperacusis, as I wrote about this issue in the same ear a year ago, but it lasted a month and it wasn't as intense. This is going on 6 months. I'm terrified this isn't really hyperacusis. I had hoped to god I was having an hyperacusis setback which had changed my tinnitus, but jesus christ this might be further damage to either hair cells, cochlear nerve or synapses or what have you.

To make matters worse I got the flu recently which after recovering fully, made this issue even worse, and now slightly on the left side. It's like 2-3 years of trying to recover out the window.

 

[David S]

@Layla23 thanks for bringing this up. I think more and more researchers start to understand that reactive tinnitus and hyperacusis are different things. There are a lot of people claiming it's the same thing but I believe that is based more on their own experience and old literature (in my option closely connected to TRT supporters).

Here is for example Wiki's explanation of hyperacusis
https://en.wikipedia.org/wiki/Hyperacusis

This has nothing to do with the reactive tinnitus I suffer from. I have no pain and feel no discomfort from sounds. It just sets off my tinnitus to crazy levels. The people saying hyperacusis is the same thing as reactive tinnitus and that there are sub categories of hyperacusis that describe what we are experiencing. When I ask them to send this literature over I never got any reply.

Reactive tinnitus is sadly under diagnosed. I live a good life with reactive tinnitus but it took me a very long time to adopt. I still have rough days but nothing special compared to others with chronic illnesses. I believe that I will never habituate. I often surprise myself once I have not noticed my tinnitus for 5 min or more. It just a part of me now. The reason wwhyay it is so hard to live with is because of this: Imagine yourself in a room with a fan or AC. It is quite easy to not to think about. But if you have dripping faucet in the same room it gets harder. If it drops without regularity it gets even harder.

For me this is a very important subject and I hope that the community learn to respect what we experience and just stop to dismiss this as hyperacusis because it's simply not. For all you people saying it's the same thing, PLEASE STOP or send over some hard facts from the literature that what we are describing is the same thing as hyperacusis.

 

[annV]

@Layla23 thanks for bringing this up. I think more and more researchers start to understand that reactive tinnitus and hyperacusis are different things. There are a lot of people claiming it's the same thing but I believe that is based more on their own experience and old literature (in my option closely connected to TRT supporters).

Here is for example Wiki's explanation of hyperacusis
https://en.wikipedia.org/wiki/Hyperacusis

This has nothing to do with the reactive tinnitus I suffer from. I have no pain and feel no discomfort from sounds. It just sets off my tinnitus to crazy levels. The people saying hyperacusis is the same thing as reactive tinnitus and that there are sub categories of hyperacusis that describe what we are experiencing. When I ask them to send this literature over I never got any reply.

Reactive tinnitus is sadly under diagnosed. I live a good life with reactive tinnitus but it took me a very long time to adopt. I still have rough days but nothing special compared to others with chronic illnesses. I believe that I will never habituate. I often surprise myself once I have not noticed my tinnitus for 5 min or more. It just a part of me now. The reason wwhyay it is so hard to live with is because of this: Imagine yourself in a room with a fan or AC. It is quite easy to not to think about. But if you have dripping faucet in the same room it gets harder. If it drops without regularity it gets even harder.

For me this is a very important subject and I hope that the community learn to respect what we experience and just stop to dismiss this as hyperacusis because it's simply not. For all you people saying it's the same thing, PLEASE STOP or send over some hard facts from the literature that what we are describing is the same thing as hyperacusis.

You are so right. Why do researchers argue about it too though? One section of researchers say reactive tinnitus is the same thing as hyperacusis, other section say it's not.