Researcher Told Me Reactive Tinnitus Is Not Hyperacusis

[Layla23]

Hey everyone! I thought I'd share this information since there seems to be A LOT of debate about this.

I have several consistent generic tinnitus tones, reactive tinnitus, and hyperacusis.

I've been doing a lot of research (reaching out to journalists and authors of research journals and such) and I came across this.

He is a hyperacusis researcher and he tells me reactive tinnitus is not the same thing as hyperacusis. So he says I need to seek out a tinnitus researcher/specialist.

I'm confused because everything I read on here points to it being hyperacusis.


In my case my reactive tinnitus is worse than my hyperacusis.
Thoughts?


All the best,
I hope everyone is doing okay.

 

[Contrast]

good job! I knew it

 

[Deamon22]

Hey everyone! I thought I'd share this information since there seems to be A LOT of debate about this.

I have several consistent generic tinnitus tones, reactive tinnitus, and hyperacusis.

I've been doing a lot of research (reaching out to journalists and authors of research journals and such) and I came across this.

He is a hyperacusis researcher and he tells me reactive tinnitus is not the same thing as hyperacusis. So he says I need to seek out a tinnitus researcher/specialist.

I'm confused because everything I read on here points to it being hyperacusis.


In my case my reactive tinnitus is worse than my hyperacusis.
Thoughts?


All the best,
I hope everyone is doing okay.

Hey Lyla, thats very interesting. Could you maybe also upload the rest of the mail, i would like to read what he says about the somatic side of T.

 

[Layla23]

And he didn't mention anything about TRT so this post isn't about being for or against TRT.

I just think the distinction between H and reactive T should be taken into consideration when considering treatments.

 

[Layla23]

Here ya go!

 

[Deamon22]

Here ya go!

Thank you, very interesting to read.

 

[cspc]

I knew it.

 

[kelpiemsp]

@Layla23 how is your reactive T these days? I'm assuming that surgery is out of the question for reactive T?

 

[Layla23]

I've had T and H for over a year but I've only had reactive T for 2 months. I can't honestly say if it has gotten better because I have been too afraid to expose myself to noises that are above 70 decibels. That's when my tinnitus reacts in a really really awful way where I can't even hear my own voice and leaves me with new permanent T tones. So it technically might be better but I don't know. It's a risk I'm not willing or ready to take quite yet.

I have been relatively fine indoors while I slowly expose myself to sounds in a controlled environment.

I am still considering surgery for the H but I still have to do a lot of research on what it might do to my reactive T.

 

[kelpiemsp]

Does the noise of a shower or running water in a bathtub hurt?

 

[GregCA]

I'm confused because everything I read on here points to it being hyperacusis.

Actually it's been one of the perennial arguments on TT, not unlike headphone usage.

Many people in here do consider them as 2 separate effects/conditions actually.

 

[Alue]

Well, he said it's independent from hyperacusis, but the causes could be similar.

I've talked to a handful of tinnitus researchers in person. They all seem to have different but similar theories on what cases tinnitus. There could be many different forms of tinnitus that we have yet to differentiate, same with hyperacusis. It would be interesting to ask him if there are different types of hyperacusis.

It's still interesting information, though. Thanks for posting.

 

[Michael Leigh]

I just think the distinction between H and reactive T should be taken into consideration when considering treatments.

These so called researchers are trying to blind people with lies. There is no such thing as Reactive Tinnitus. It was a term made-up in tinnitus forums. Some in the medical field have latched on to the word and I believe thought: What a good idea to make more money out of those suffering with tinnitus. The "con" is to first treat Reactive Tinnitus with a type of sound therapy which they call: phase 1. The 2nd phase is to treat the hyperacusis with sound Therapy.

I don't believe in Reactive Tinnitus for a moment. It is hyperacusis plain and simple.
Michael

 

[Contrast]

These so called researchers are trying to blind people with lies. There is no such thing as Reactive Tinnitus. It was a term made-up in tinnitus forums. Some in the medical field have latched on to the word and I believe thought: What a good idea to make more money out of those suffering with tinnitus. The "con" is to first treat Reactive Tinnitus with a type of sound therapy which they call: phase 1. The 2nd phase is to treat the hyperacusis with sound Therapy.

I don't believe in Reactive Tinnitus for a moment. It is hyperacusis plain and simple.
Michael

Do you have evidence to suggest hyperactive fusiform cells in the DCN do not respond to external sound?

How do you explain temporary tinnitus spikes after certain noises some individuals report?

Also when you say hyperacusis I'm going to assume you mean two conditions, ear pain from noise "noxacusis" and abnormal amplification of noise "recruitment" combined together.

Reactive tinnitus isn't painful, or increases the volume processed in the brain
we can therefore conclude tinnitus does have reactive properties.

Reactive tinnitus exist.

 

[Layla23]

@Michael Leigh I mean he is a prominent hyperacusis researcher that took the time of day to email me. We stopped emailing after he saw that he couldn't really help me since my chief complaint is the reactive tinnitus tones .....not the hyperacusis itself. So I respectfully don't think he is making any money off of making the distinction..... He didn't offer me any services and he didn't direct me to anyone else who could make money off of me.

But I am sorry to hear you had a negative experience with a researcher.

And Michael I've read most of your posts over the last 6 months. I don't think you have reactive tinnitus. I think your tinnitus does fluctuate--- that is true. Sounds like my boyfriend's tinnitus. His fluctuates because of his ETD. But his T is NOT reactive. You would know if it were. I have very specific triggers (white noise, water, wind, passing cars, being in a car, fans, etc).

And I am aware of the "flaw" in using the term "reactive tinnitus". I understand it is a term that originated from the internet forums. But I thought hyperacusis wasn't fully believed to be true either until people kept talking about it together on the original forums?
https://www.buzzfeed.com/joycecohen...ecomes-torture?utm_term=.ki2gL5lq5#.ysKBegZNg



I don't intend to argue so all I will say is that I felt very alone when I would research my symptoms and I could not find anyone who could relate. I was in full despair. Finally I came across the term "reactive tinnitus" and all of a sudden everything I had been experiencing was validated. So to me the distinction DOES matter because if it helps just ONE more person feel less alone then that's all that matters. I don't care what the "correct" terminology is. It will probably be renamed later anyway.

So I am sorry you feel like it does not exist but that has not been my experience and that of others who I would be happy to connect you with if you are ever interested in speaking with them to learn more.

I do hope however you are doing well. It seems you've had T for a longer time than I have been alive. That is very impressive and I wish you the best.

 

[Contrast]

I will go as far as saying there could be a hypothetical link between tinnitus, recruitment and noxacusis (hyperacusis with pain) but the reactive tinnitus itself can be easily explained by the fusiform cells in the dorsal cochlear nucleus being aggravated to noise.

No need for a conspiracy here.

 

[Layla23]

See thank you. That is the first time I am hearing of this. I only post this because I want to learn more about reactive T and I hope this information helps someone else.

@Contrast

 

[Layla23]

@kelpiemsp

It's all very difficult to explain because I have multiple regular T tones and I also have multiple reactive T tones that come up in specific circumstances. My static reactive T comes on anytime I have a fan or I have water running or I am near the wind. That one is not so bad. It immediately stops as soon as the source is shut off. And I mean IMMEDIATELY stops. It's weird.

The other reactive T tone is awful. I don't even know how to describe it. I tried going to a CVS once recently --very quiet only about 70 decibels-- and my reactive T (the really bad one) immediately cranked up. I don't know what specifically triggered it. Perhaps the music? I am not sure.

But no..... the shower is thankfully not painful. For me it's the super high frequency sounds that jab my ears. LIke cell phone ringtones or phones in general.

 

[Michael Leigh]

Do you have evidence to suggest hyperactive fusiform cells in the DCN do not respond to external sound?

How do you explain temporary tinnitus spikes after certain noises some individuals report.

Also when you say hyperacusis I'm going to assume you mean the painful varation "noxacusis" and amplification related hyperacusis "recruitment".

Reactive tinnitus isn't painful, or increases the volume processed in the brain
we can therefore conclude tinnitus does have reactive properties.

Reactive tinnitus exist.

In reply to all your questions, the answer is Hyperacusis. Hyperacusis comes in different levels of severity and not everyone will feel pain with it. Some people will just have an over sensitive auditory system. Most of the people that experience oversensitivity to sound, it is a result of "noise trauma" . This can improve with time but in some cases "sound therapy" in the form of white noise generators are needed to be worn to desensitize the auditory system. Counselling may be required too.

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.

I wish you well.
Michael

 

[Contrast]

I'm confused which one is right on the mechanism's behind Recruitment/non-painful hyperacusis. Both could be right at the same time.

Some are saying recruitment is peripheral with hair cells that transfer soft,mid volume noises being gone yet hair cells associated with loud noise still exist.

Others say it's neuroological and possibly linked to tinnitus.

Hypothesis suggest the brain acts as an internal hearing aid, increasing a gain mechanism to pick up on damaged hair cell regions causing recruitment, and the process of amplifying also creates hyper neuronal activity (tinnitus).
[please don't treat this as a proven theory, it's still up for debate]

However they are clearly different from hyperacusis with pain (noxacusis), which researchers seem to be saying OHC nerve fibers are playing some role, yet still poorly understood yet evidence has been shown the cochlea does have hidden pain receptors.


I just want to know the truth.

 

[Contrast]

In answer to all your questions, the answer is Hyperacusis. Hyperacusis comes in different levels of severity and not everyone will feel pain with it. Some people will just have an over sensitive auditory system. Most of the people that experience oversensitivity to sound, it is a result of "noise trauma" . This can improve with time but in some cases "sound therapy" in the form of white noise generators are needed to be worn to desensitize the auditory system. Counselling may be required too.

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.

I wish you well.
Michael

why would a conspiracy exist?

 

[Contrast]

I will never look at respectable researchers and scientist as people involved in conspiracies.

For example I disagree with Auris medical's NMDA hypothesis as do the majority of tinnitus researchers, but I don't think it's a conspiracy just a semi-wrong idea.

 

[Michael Leigh]

why would a conspiracy exist?

You surprise me @Contrast someone of your intelligence. Please get with the programme. It's all about making money out of people that are suffering. Tell people what they want to hear: You got Reactive tinnitus and hyperacusis. Two medical conditions that need to be treated separately.

I am just given my concise version of events but I hope you get the picture.
Michael

 

[Contrast]

You surprise me @Contrast someone of your intelligence. Please get with the programme. It's all about making money out of people that are suffering. Tell people what they want to hear: You got Reactive tinnitus and hyperacusis. Two medical conditions that need to be treated separately.

I am just given my concise version of events but I hope you get the picture.
Michael

i will investigate.

 

[attheedgeofscience]

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.

Interesting comment from someone who doesn't have the first fucking clue as to whether glutamate is a neurotransmitter, a spicy ingredient, or an exotic fruit. Nor would you have any idea as to whether AM-101 is a new radio station or a drug developed to treat peripheral tinnitus. Indeed, you don't even master your "own turf" knowledge as evidenced by your inability to spell the Polish engineer's name correctly no less than 48 times:

Jasterboff's name is spelt Jastreboff...!!!

A while back I wrote the following in a now-closed thread:

"@Michael Leigh – I suspect you are so hard-wired to your self-made ideology of regurgitated knowledge of TRT and audiology that, even long after "the cure" has been found, you will still be roaming the corridors of TinnitusTalk preaching your own views to a then-vacant community. Occasionally, you might wonder to yourself "where is everyone?" – only to proceed with another day of lecture by responding to old posts from a former era..."

I guess what I really wanted to convey – and – which apparently no one has ever told you: you are too old and too stupid...

 

[Tinker Bell]

@Contrast An FYI as you research the topic, none of the audiologists or ear specialists that I saw recommended treating my hyperacusis and reactive tinnitus separately. In fact, they instead advised not undergoing TRT while my tinnitus reacted so severely.

@Layla23 my tinnitus behaves similar to what you described. Specific sounds cause an immediate tinnitus volume increase, which resolves as soon as the offending sound stops. I had loudness hyperacusis initially, there was a very clear difference between the two and the loudness hyperacusis faded with time.

As part of the assumed conspiracy, did the researcher advise you to undergo to separate procedures?

 

[Michael Leigh]

i will investigate.

I have had tinnitus a long time @Contrast and once had very severe hyperacusis that was cured in two years using white noise generators. I believe the majority of the people in this forum, suffering from an over sensitive auditory system, as a result of "Noise Trauma" If they were able to buy white noise generators and I know many can't because of their cost, their condition would improve. Some may also need counselling with a Hearing Therapist trained in Tinnitus and Hyperacusis management, because of the psychological impact that Tinnitus and hyperacusis can have on a person.

Michael

 

[dpdx]

None of the audiologists or ear specialists that I saw recommended treating my hyperacusis and reactive tinnitus separately. In fact, they instead advised not undergoing TRT while my tinnitus reacted so severely.

@Layla23 my tinnitus behaves similar to what you described. Specific sounds cause an immediate tinnitus volume increase, which resolves as soon as the offending sound stops. I had loudness hyperacusis initially, there was a very clear difference between the two and the loudness hyperacusis faded with time.

As part of the assumed conspiracy, did the researcher advise you to undergo to separate procedures?

Sorry for asking this what is SSHL?

 

[Tinker Bell]

Sorry for asking this what is SSHL?

Sudden sensorineural hearing loss

 

[dpdx]

Sudden sensorineural hearing loss

Is that the same thing as NIHL?