Why Isn’t TRT the Holy Grail?

[stophiss]

Lots of discussion, some heated about the benefit of TRT and even a debate as to whether TRT is a bonafide cure or by stark contrast, pure fallacy.

I will start discussion with my post below from another thread. Please share your views on the subject including your personal experience.

Bill, I look forward to your comments....

My opening salvo:

I don't know anybody who believes TRT is a complete cure to either hyperacusis or tinnitus. Perhaps there are some that believe this. I do as I have written before believe the brain however can be retrained in the face of injured hearing apparatus which degrades hearing. An analog is someone without T or H who is hearing impaired. T and H I believe are rooted in neuropathy...perhaps the result of hardware degradation and modifying the signal to the brain...or simply degradation to nerve function as part of a larger neuropathy. A cure of course is different than a directionally correct therapy that does help a subset with this disorder. That is an important distinction. Two camps exist and I believe it can be explained even tho I know nothing of H Network or the BS censorship there to promote a given position on the veracity of TRT.

There seems to be divide on this forum as well. I want to emphasize...its ok to disagree. People disagree about everything from politics to science...no doubt including the countless researching for a cure to tinnitus today. If you get 100 scientists in a room there won't be unanimity. I know because I have been in such a room. Pre dating the internet, if you want proof, read about Einstein's life and 'race' to discover relativity against his arch competitor the pre-eminent mathematician of his time. Or Edison who lied about the benefits of DC versus AC...AC ultimately winning out to power the grid in major cities throughout the world. Scholars have their beliefs and even self agendas which is egregious and somewhat analogous to censorship on message forums today. One positive, is this forum lets us play with limited censorship. A credit to the moderation here. Yes, things can get out of hand like they did the other day and its always regrettable and many times seems to tie into the divide about TRT.

A word about TRT as the holy grail or not and two dug in camps that don't agree. Some points I believe relevant:

- People have different type of T. This is somewhat known but further exposed by the responses to my Vacuum Sound therapy post. Look at the responses. People responded completely the opposite...in fact a 50/50 split of vacuum sound therapy...for half, it improved their T...for the other half...it makes it worse. And I am sure with a large sample size, some would be unaffected as well.

- Placebo, emotion and reality. Its a given that T is tied to a person's emotional state...certainly most of us. Of course chicken and the egg...which came first. But still an agitated person I believe tends to struggle more with tinnitus as an agitated person does for example with neuropathy...greater nerve excitement when the brain is in this state. This is something we know intrinsically. Ever have to do something that made you really nervous? The nervous system is under assault at this time. Belief in something by contrast can manifest positive physiological change. So whether people agree with the physics of TRT in terms of distracting the brain away from tinnitus specific frequencies, a person's belief that sound therapy works, may manifest an improvement in T because a 'person believes it will'.

So possible, camps are divided because experiences vary greatly...like the vacuum cleaner response. We are not the same in spite of all being joined at the hip with this scourge called tinnitus. Tinnitus is heterogeneous, not homogenous as we are reminded so often by reading anecdotal accounts. TRT may not work for everybody. In fact, I am sure it doesn't...or even the volume or sound signature is missed to be effective. But to throw TRT under the bus is equally wrong and it exists for a reason even though it may not work for you. Of course it isn't a cure. It is a therapy that works for some and doesn't work for others...just like running the vacuum.

Haters are gonna hate. People dig in based upon peering through the lens of their personal experience which forges a given person's belief and many times agenda. The truth is generally in the middle.
I believe we all agree on one thing, censorship is despicable. I am glad, I never found the forum you speak of.

Lastly, I want to wish all of us well even as we debate what methods work best to cope with this challenge.

 

[Tom Cnyc]

Hi Tom,
I disagree. Nobody I know believes TRT is a cure. Cure is different than a directionally correct therapy that does help a subset with this disorder. That is an important distinction. Two camps exist and I believe it can be explained even tho I know nothing of H Network or the BS censorship there to promote a given position on the veracity of TRT.

There seems to be divide on this forum as well. I want to emphasize...its ok to disagree. People disagree about everything from politics to science...no doubt including the countless researching for a cure to tinnitus today. If you get 100 scientists in a room there won't be unanimity. I know because I have been in such a room. Pre dating the internet, if you want proof, read about Einstein's life and 'race' to discover relativity against his arch competitor the pre-eminent mathematician of his time. Or Edison who lied about the benefits of DC versus AC...AC ultimately winning out to power the grid in major cities throughout the world. Scholars have their beliefs and even self agendas which is egregious and somewhat analogous to censorship on message forums today. One positive, is this forum lets us play with limited censorship. A credit to the moderation here. Yes, things can get out of hand like they did the other day and its always regrettable and many times seems to tie into the divide about TRT.

A word about TRT as the holy grail or not and two dug in camps that don't agree. Some points I believe relevant:

- People have different type of T. This is somewhat known but further exposed by the responses to my Vacuum Sound therapy post. Look at the responses. People responded completely the opposite...in fact a 50/50 split of vacuum sound therapy...for half, it improved their T...for the other half...it makes it worse. And I am sure with a large sample size, some would be unaffected as well.

- Placebo, emotion and reality. Its a given that T is tied to a person's emotional state...certainly most of us. Of course chicken and the egg...which came first. But still an agitated person I believe tends to struggle more with tinnitus as an agitated person does for example with neuropathy...greater nerve excitement when the brain is in this state. This is something we know intrinsically. Ever have to do something that made you really nervous? The nervous system is under assault at this time. Belief in something by contrast can manifest positive physiological change. So whether people agree with the physics of TRT in terms of distracting the brain away from tinnitus specific frequencies, a person's belief that sound therapy works, may manifest an improvement in T because a 'person believes it will'.

So possible, camps are divided because experiences vary greatly...like the vacuum cleaner response. We are not the same in spite of all being joined at the hip with this scourge called tinnitus. Tinnitus is heterogeneous, not homogenous as we are reminded so often by reading anecdotal accounts. TRT may not work for everybody. In fact, I am sure it doesn't...or even the volume or sound signature is missed to be effective. But to throw TRT under the bus is equally wrong and it exists for a reason even though it may not work for you. Of course it isn't a cure. It is a therapy that works for some and doesn't work for others...just like running the vacuum.

Haters are gonna hate. People dig in based upon peering through the lens of their personal experience which forges a given person's belief and many times agenda. The truth is generally in the middle.
I believe we all agree on one thing, censorship is despicable. I am glad, I never found the forum you speak of.

Lastly, I want to wish all of us well even as we debate what methods work best to cope with this challenge.

I never said TRT was bad. I used some elements of it for about 4 months. I know someone with H that was helped tremendously by it years ago - to the point of t he can go to nightclubs on occasion now.

What I don't like about it is how it is preached as gospel. "Don't sit in silence". "Don't do x,y,z"

There is a professional psychiatrist who posts here that has T, H, and despite it taking over his life for a time, plays live music again. He advised me to sit and listen to tinnitus from time to time. Exposure. Facing fears.

I'm fine with people pushing something that helps them, it's iust about HOW you do it. The TRT camp has a tendency to brush off other methods more than the other way around.

Just my .02

 

[VRZ78]

I never said TRT was bad. I used some elements was or about 4 months. I know someone with H that was helped tremendously by it years ago - to the point of t he can go to nightclubs on occasion now.

What I don't like about it is how it is preached as gospel. "Don't sit in silence". "Don't do x,y,z"

There is a professional psychiatrist who posts here that has T, H, and despite it taking over his life for a time, plays live music again. He advised me to sit and listen to tinnitus from time to time. Exposure. Facing fears.

I'm fine with people pushing something that helps them, it's iust about HOW you do it. The TRT camp has a tendency to brush off other methods more than the other way around.

Just my .02

What what the cause of the T of the guy who goes to nightclub now ?

And the psychiatric ? What was the cause and what did she do ?

 

[Tom Cnyc]

What what the cause of the T of the guy who goes to nightclub now ?

And the psychiatric ? What was the cause and what did she do ?

Both were noise induced. Like I said - one did TRT in NYC with Susan Adams, the other applied CBT methods that he had been advising others to use for other issues to his own.

I did CBT weekly for months. I still go once a month. It won't help symptoms but it gets ya through the freak out time better than not going does for sure.

 

[bill 112]

I'll give you my very detailed story for all here to read and make a judgement for themselves on behalf of personal experience and not some theory that gets thrown around and taken as fact.A theory is an idea where you gather evidence around your idea to support it,there is no evidence to support this theory whatsoever apart from anecdotal stories that are apart of a bigger picture,but first my story and experience with TRT.

I developed H in January 2014 from a high pitched noise that lasted no more than one second,the world grew ten times louder and I was plummeted down into hell.

I didn't experience pain with my H but more so a complete intolerance to sound.In a desperate attempt to get more info on what was happening to me I ran straight to google only to be met with page after page of TRT for Hyperacusis and many pages claiming massive cure rates as long as the individual stuck to the programme.It was the same story on YouTube and pretty much everywhere you looked,it all pointed back to TRT as the answer.
I rushed to my G.P that day and told him what was going on,he clicked away on his computer and gave me the nervous system speech that I'm sure many of us here now know.It felt right to me,my head would get a shock from noise so him saying that my nervous system got a shock and needed to be de-sensitised made sense,plus it was literally plastered all over the internet so it must be true?Right?

I then returned home and started looking for the nearest TRT clinic I could find,sadly the nearest was in London so I booked my appointment immediately.The next day I got a phone call from a friend of mine whose a doctor and had heard what had happened,he informed me that there is a TRT specialist here in Irekand and that I could see him in no less than an hour.I jumped into my car and left immediately.

Upon getting there I met the audiologist who sat me down and asked what had happened,he assured me the noise couldn't have damaged my hearing and proceeded to do a hearing evaluation on me.The hearing test was perfect and I still remember him saying"hah Mr.King,you could hear the grass grow!"
He then done an LDL test which peeked at 65db,that's all I could handle.

He then sat me down and again gave me the big nervous system shock flight or fight malarkey that I heard everywhere else up to this point.He gave me three different CD's to listen to for a certain amount of time a day and to keep constant backround noise throughout the day no matter where I am.I was then told NOT to wear earplugs at all or I'll get worse and worse as everyday passes,I was only to use earplugs in environments deemed loud to the general public.

So that was it,I then went to see my neurologist on the same day and he too gave me the very same speech and theory that everyone else was giving me so I was convinced of the method.
I returned home relieved but the funny thing is,I never used the CD's.Instead I sat in nearly all day listening to music at varying levels,really low through my tv and increased it slowly but surely over the coming months.I was back at work,back driving back doing nearly everything I had been doing prior to my noise exposure.I was convinced that TRT worked,I was convinced of the theory and there was no changing my mind,after all it had worked for me,right?

At my last visit to my audiologist in early 2015 my ldls were supposedly now at +100db and a bit less in the upper frequencies but over all a massive improvement that according to him would get better and better.
I left that day a happy man,I'd been through hell and came out the other side a new man.I wasn't perfect,very sharp noises we hard to bare and loud noises were uncomfortable but I was for the most part,cured.

I took it easy for the remainder of 2015,I still had an element of fear in me,I was always afraid to push things too hard as I was somewhat traumatised by what had happened,but over all I was living a completely normal life once again.

I then met a girl in September 2015 at a car show I was attending and we hit it off immediately and began seeing eachother soon after.I made another appointment with my audiologist and asked for advice on what to do for the future,he advised me to lead a normal life and to avoid obvious hazards like clubs etc which I obviously was going to do regardless,not to wear earplugs in environments less than 85db and that I would be absolutely fine.

That was it,I began dating this girl,work was good and my life couldn't have been better until my father suddenly died in October.His death to me can never be understated,the sense of loss I felt that day will haunt me forever,it's still as painful today as it was then.
I managed to get to his death bed just before he passed and his final words to me were,"go live your life son,a good one,for me.You only get one go at this so make it count"
He then passed into a coma and died a few minutes after.

I walked out of the hospital in a complete daze,he was here one second and now he's gone just like that.It showed me that life is just so short and that living it should be our main and only priority.

As a result of this I began to get out a lot more with my friends and girlfriend,mainly to help with the depression but also to start getting out and living life again,to start getting around more sound and suppress any feelings of fear I had against sound.
And that's exactly what I did whilst always remaining sensible at the same time,I wasn't going to be an idiot about this and start clubbing like a fool but more so just get out and about more.

I brought my sound meter with me everywhere and my earplugs along with my earmuffs in the boot of my car in case I needed them.I always wore full hearing protection when using any tools,or when working on my car incase an alarm or something stupid would go off,I was always thinking ahead.

I was back socialising,back getting out and about in shopping centres,going to family dues,bowling you name it and I was back doing it plug free.I was always sensible about when to plug up but that never happened because I simply refused to put myself into obvious danger zones,we went on a trip to London and I wore earplugs throughout the whole walk around London!I protected but never over protected and I can't stress this enough.

In December I began experiencing a weird pain in the back of my head and back,it came about a sudden noise happened beside me,not loud but enough to make my ear stab.I made an appointment with my doctor and he removed a ball of wax and told me the ear muscle had contracted causing this pain or that I twisted my neck and that it would shortly pass.I then went back to my audiologist and he said the very same thing and that I was to keep going as I was.

I was given some muscle relaxers and sent on my way.I continued living the way I was which was a completely normal life but I noticed that this pain in my back and neck were getting worse and I couldn't work out why?My T was still the same,my tolerance to sound was still great so what the hell was causing this?It would come and go when it pleased!How could this be?Im not exposing myself to dangerous levels and I always use hearing protection in the right situations so it couldn't be from my ears?After all the pain is in my neck and shoulders and my ears aren't paining me so there must be something wrong?But what?

To cut an already long story short in January of this year my ears suddenly collapsed out of nowhere,no anxiety no stress no nothing it just went boom and my T went through the roof and my ears went on fire with pain along with my whole back and neck.My H went haywire making every sound ear splittingly painful!

I was rushed to the hospital and they diagnosed the pain as neuropathic pain and that it was most likely peripharel based and to do with my ears and that they couldn't help me.

I then rushed back to my audiologist and he conducted another full hearing examination that came back perfect.He then gave me the same speech he had two years ago and proceeded to try and hand me cd's.When I asked him about the horrendous pain that was diagnosed in the hospital he said it was impossible and that there were no pain sensors in the inner ear and that it was my fear response telling me that my ears are painful.

And that's when it hit me,this pillar of strength I had used to keep my tolerances up was the very thing that had destroyed me,that this man knew absolutely nothing whatsoever and that this whole TRT theory was a complete and utter sham,a wild guess taken by Jastrebroff that just got accepted as fact regardless of it being the complete nonsense that it was.TRT sits along natural recovery and then takes the credit for said recovery when it happens,if you don't recover then you simply didn't want to recover according to them.

As of now I'm crippled with H,so bad that I barely leave my room for any length of time,talking is ok but all it takes is that one noise and I'm screwed completely in agonising pain.
I believe TRT is helpful for people with phonophobia or anxiety induced H,but for people with noise induced H it's absolutely detrimental to them and the proof is in the pudding.Look at all the pro sound therapy pages and it's all sunshine and butter cups but when you come here the truth speaks a different tone,it speaks the reality of the situation.

Funny enough if you google Hyperacusis now there's hardly a word about sound therapy,a lot of places refer to synapse damage now so a complete turn around from what it was a few years ago.

Anyway that's my experience with TRT and the Jastrebroff model,I could have wrote plenty more but I'd be here for hours,and do think I said I don't like typing lol.

 

[glynis]

My view,
In England audiology treat tinnitus and hyperacusis with white noise generators and along with that comes TRT for the lucky ones free on the NHS.

I was given two white noise generators and instructions but that was it.

With TRT they work on your emotional state towards your sound and as weeks go by they re acess how your reaction to your sound has changed wearing WINGS as well as how you are sleeping and feeling ....
TRT can last 1-2 years and wearing maskers takes time for your brain to adapt and cope with the sound and the goal is to be masker free and coping with your sound better.
It's not a cure more to do with acceptance and getting on with life again after tinnitus invades your life.
CBT is counselling but not with maskers .....
Lots of love glynis

Everyone's view is equally important on a debate without any personal remarks to a poster....keep it nice ...lots of love glynis

 

[Tom Cnyc]

My view,
In England audiology treat tinnitus and hyperacusis with white noise generators and along with that comes TRT for the lucky ones free on the NHS.

I was given two white noise generators and instructions but that was it.

With TRT they work on your emotional state towards your sound and as weeks go by they re acess how your reaction to your sound has changed wearing WINGS as well as how you are sleeping and feeling ....
TRT can last 1-2 years and wearing maskers takes time for your brain to adapt and cope with the sound and the goal is to be masker free and coping with your sound better.
It's not a cure more to do with acceptance and getting on with life again after tinnitus invades your life.
CBT is counselling but not with maskers .....
Lots of love glynis

Everyone's view is equally important on a debate without any personal remarks to a poster....keep it nice ...lots of love glynis

Have they helped you, Glynis? Anything that helps is great!

 

[stophiss]

I never said TRT was bad. I used some elements of it for about 4 months. I know someone with H that was helped tremendously by it years ago - to the point of t he can go to nightclubs on occasion now.

What I don't like about it is how it is preached as gospel. "Don't sit in silence". "Don't do x,y,z"

There is a professional psychiatrist who posts here that has T, H, and despite it taking over his life for a time, plays live music again. He advised me to sit and listen to tinnitus from time to time. Exposure. Facing fears.

I'm fine with people pushing something that helps them, it's iust about HOW you do it. The TRT camp has a tendency to brush off other methods more than the other way around.

Just my .02

Great post Tom. Thanks. Makes sense.

 

[glynis]

Have they helped you, Glynis? Anything that helps is great!

I wore white noise generators for a few years but as my tinnitus is to sever in both ears I went on to wear duel purpose hearing aids.
The white noise generators were a blessing to me in my early years with tinnitus and remembering sobbing in my audiologist arms as tinnitus with Menieres was tough going...lots of love glynis

 

[VRZ78]

@glynis did you ever try a course of antivirals or antifungals for your Meniere ?

 

[glynis]

@glynis did you ever try a course of antivirals or antifungals for your Meniere ?

No....was put on Betahistine and now Cinnarazine 15mg up to 6 a day as needed...alao
Fingers crossed my last flairup has settled I think bought on from a lumbar puncture ....
Waiting see my Menieres consultant again and audiology again..
My main problem is sever Bilateral tinnitus and hearing loss and balance as nearly at stage 3 burn out but get other symptoms now and then ..lots of love glynis

 

[Ring Ding]

I just recently posted an update on my situation in another thread I started but all I can say is that when my Hyperacusis started I went to about a half dozen doctors and the same amount of Audiologists. I passed all my hearing tests and had no damage in my ears that could be seen. None of these people offered me any sort of advice whatsoever. I actually had to go back to the doctor and ask for steroids. He thought it was a good idea for me to try it but why didn't he think of that. I asked about TRT with pretty much all of them and they all said it was a bunch of rubbish. Only one doctor gave me a piece of paper with some tips , take coq10 and magnesium, and the name of an app for my phone.

I should add that when all this started I was A year and six months in to having an autoimmune disease triggered by a vaccination. All my problems associated with that were certainly neurological. I had many doctor visits for this as well but I was told there was nothing I could do to fix it or that it was all in my head. That second comment was obviously very insulting to me. I really just wanted to punch some of these doctors in the face.

Once I figured out what triggered the autoimmunity it became my quest to find a way to reverse it. This started with the vaccine and what in a vaccine could make these things happen to a person who the week before was running 7 miles every weekend and now struggled to get out of bed in the morning. The answer was heavy metals. Most notably Mercury. Two of the symptoms of mercury toxicity happen to be tinnitus and sound sensitivity.( I have had tinnitus since I was a kid. I was fully habituated to it. I really never even thought about it at all. I just slept with a fan at night and that was that.) I do wonder though if my T started after I started getting my fillings. Irt was so long ago there is no way I could remember but I do know that my T was not caused originally from noise exposure.

I had to have all my silver mercury dental fillings removed ( About ten of them) because they actually continuously leach mercury into your body. Once that was done I was able to begin the process of chelation to remove the mercury from my brain and organs. it was at about the six month mark when things began to really change for the better. I was able to walk again, my personality started to come back and while I still had a great deal of pain and muscle weakness I was not dizzy and feeling sick with migrane headaches constantly. It was working pretty well so I decided to go out and celebrate by going to a concert with my brother. The next day was when i woke up with burning pain in my ears, fullness , really loud tinnitus and eventually hyperacusis. ( At the time of the show I had only just recently started using the supplement that removes the mercury from your brain and I wonder if all that Mercury swimming around just landed in a bad spot and caused all this to happen).

Plenty of other Mercury toxic people have T and H and this includes Autistic children as well. The amount of different things mercury can do to your body is quite staggering. I just completed a year of chelation and I plan on doing it for much longer. I am curious to see if after a few years and I can finally get all the mercury out of me what the outcome will be for all of this. There doesn't seem to be any other type of cure and I know a dad who had an Autistic son with severe hyperacusis and he claims his son is all better and can go to the movies and everything again. I can olny just hope for the same thing at this point. The H is fading and really at this point I am the most bothered by my ear fullness and the level of tinnitus I have, it's so loud it's hard to mask it. Whe I move my jaw a certain way I can feel and hear something crunchy and stick inside my ear. Not sure if it's the muscles or the tubes but something in there is wrong but nobody can see or tell what the hell it is.

Just as bill stated above the only thing I did was try and be as normal as possible and not over protect myself. I was also trying to listen to music in an attempt to help convince my mind that I love sound. I had to start at the lowest possible volume and work my way up. Aside from that I am still doing the chelation. I'm not cured of anything yet but I I am moving in the right direction with all my problems. Only thing I am not sure of is if it was just the passage of time that healed me or if the chelation had anything to do with it. I'll probably be chelating for the next two years so we'll see what happens as I up my doses more and more.

 

[PaulBe]

I've tried a combination hearing aid/WNG, but its too much like masking tinnitus with even more tinnitus, such is my current frequency.

 

[Danny Boy]

I was given White noise generators, issue is, I had hyperacusis and sound amplified/ raised my tinnitus. Fans did the same too. As for TRT, it's helpful for people with tinnitus which isn't the worst. But if you had it like I used to, there was no way, it could help.It was so so loud, even heard it very loudly over trains. However this was the past. TRT Can't help 100% of all cases, but if it helps you, good on you.


Let's hope for actual real treatments. Happy holidays ^^.

 

[stophiss]

I was given White noise generators, issue is, I had hyperacusis and sound amplified/ raised my tinnitus. Fans did the same too. As for TRT, it's helpful for people with tinnitus which isn't the worst. But if you had it like I used to, there was no way, it could help.It was so so loud, even heard it very loudly over trains. However this was the past. TRT Can't help 100% of all cases, but if it helps you, good on you.


Let's hope for actual real treatments. Happy holidays ^^.

Informative post Danny which underscores the many faces of H and T. One size does not remotely fit all as we attempt to define H and T. What better dichotomy is there? One person's T goes up due to sound enrichment whether it be a vacuum cleaner or noise generator....and other's T goes down due to this exposure. Is there any wonder why perhaps half this forum believe TRT is rubbish? Because half here may have the type of H and T that is violated by sound enrichment which worsens conditions.

So thanks for adding clarity and will add, I find many of your posts insightful. You write with great clarity.

A last question...and perhaps even related to the passage of time....can you define for yourself how or why your T and/or H improved? You said in the early days your tinnitus was at its worst and I extrapolate from that you must of improved. Can you speculate why other than putting more time between acoustic trauma by a change in lifestyle, i.e. reduction in overall noise level?

Thanks

 

[stophiss]

A brief intermission from personal accounts and thanks for all...to add a statement of interpretation based upon great personal accounts well explained.

I believe we are at a point to say...that TRT doesn't work for everybody. In fact, I am compelled to go a step farther that I never thought I would. Sound enrichment can in fact be hazardous to those with acute hyperacusis...it can spike and not diminish T. Therefore it is not a universal truth for all that suffer with T and H that TRT will help and it may in fact in rare cases hinder improvement. Listening to shared stories of our personal journey with this, now the rancor or divided camps is more understandable isn't it? At least the divide in belief about TRT is more understandable. At least the rancor about this subject is gratefully absent in this thread and will add largely absent from this forum because I believe we share much more commonality through suffering than any differences. I hope for empathy for each other as the centerpiece of our being as we each try to cope.

Simple points of fact illuminated in this thread:

- some suffer with profound hyperacusis and sound enrichment aka TRT may make symptoms worse.

- since TRT is rooted in 'acceptance' of tinnitus and in fact acceptance of alternative sound frequencies, it is hard to differentiate if TRT manifests a positive change other than the simple passage of time which brings acceptance of a condition we initially are repulsed by. Time heals as actual healing takes place. Our bodies change with time.

- noise reduction/wake up call/life style change: Further, its feasible that the brain would acclimate naturally and improve if a person makes bonafide adjustments in their lifestyle that would lower the threat of harmful sound levels. Like stoppage of headphone usage espoused by Michael I have adapted because my hearing is injured and even normal sound levels of headphone listening maybe injurious. Don't hedge your bets when the risk is high aka increase in tinnitus. And of course each of shouldn't fall down the backside of the mountain of sound avoidance which could increase our H...making more minute sound less bearable.

- TRT clearly helps people. There is a subset...it may even be 50%...a bit higher or lower....a crude extrapolation from my Vacuum Cleaner thread. For some their T reacts negatively to sound augmentation as duly noted by replies and by contrast for others like me, running the Vacuum which I don't do often enough my T actually goes down...just like my T goes down when hearing the sound of my own voice in a social setting or even talking on my cell. So those of us with this condition are complete opposites which is hard to fathom but true and I believe now fundamentally explains why some are revolted by TRT and others embrace it.

All for now. Maybe more to come. My interpretation only. Please feel free to take exception and/or add to the list. That is what this thread is about...to make sense of why people experienced with this disorder are so polarized and try and explain the divided camps about TRT. To me the divide exists because our experience with this condition can either be the same as others or...profoundly different. All have impaired eyesight (hearing). Some are nearsighted and some are farsighted to make another analogy.

 

[maltese]

that's when it hit me,this pillar of strength I had used to keep my tolerances up was the very thing that had destroyed me

So do you think "living your life" Contributed to your sudden decrease in sound tolerance? Or continuous usage of sound enrichment?

I'm trying to figure out how to live when keeping my T low is my top priority now. I use sound enrichment extensively now. So many questions. So few anwsers. What advice would you give a new sufferer with mild/moderate T&H? Use sound enrichment? Don't?

Your description is pretty much what I planned for the future. Have fun, be sensible about your hearing, protect but not overprotect.
I dont know anything anymore :/

 

[bill 112]

Look at it like this,a loud noise hits your ears and damages them making them more sensitive to sound and weakening them.
What's the solution,put more noise in there sometimes even more than what your comfortable with and that will sort out that pesky nervous system.

If we apply the same logic to let's say a cut finger,then the treatment would be sticking a needle in the cut over and over again until you either heal or the pain doesn't bother you anymore.
Your finger is going to heal all on its own,how much we don't know but sticking a needle in it isn't going to speed things up,if anything it's going to hault the healing process or make it worse and it's the same with your ears.Your finger isnt going to heal to its full ability if you keep stabbing it with needles over and over again in the false belief that this will somehow make it better.
Let them heal,give it time and you will see improvement.

My advice to you would be this,don't expose your ears to anything they don't like,if watching the tv at a certain volume is painful or uncomfortable then lower the volume!Dont put them through anything they're not happy with,that pain your experiencing isn't your mind,it's your ears telling you to stop!!

Dont fear sound,don't be afraid to use your ears just be smart enough to know when they're trying to tell you it's too much.

Given enough time you will see them recover,how much is anyone's guess but I do know a guy who developed severe H from headphones.Four years later and he's basically cured now and all with zero sound therapy whatsoever.Just time,patience and a little bit of luck.

 

[glynis]

OHP and TRT:

It is possible for patients to break the OHP cycle. Improvement can be achieved if clinicians are willing and able to spend significant amounts of time with each patient utilizing Tinnitus Retraining Therapy (TRT) protocols. TRT protocols can be customized to address hyperacusis and the particular circumstances of each patient.3

Following is a case report of one patient with extreme hyperacusis and phonophobia who was treated successfully with TRT.

Lota of love glynis

 

[bill 112]

Glynis,your an amazingly nice caring human being but I have to disagree with that post.

It's just more TRT propaganda,using hearing protection can't worsen Hyperacusis like these people say.
You might be temporarily more sensitive in the same way your eyes are when you leave a dark room and walk into the light,but it can't permanently worsen your condition because if that were true nearly every factory worker would have Hyperacusis by now.

Its useful in the cases of phonophobia and helps with breaking that cycle,but other than that it and it's mentality is detrimental to a H patient.

I don't fear sound,I fear pain.

 

[VRZ78]

OVERPROTECTION - HYPERACUSIS - PHONOPHOBIA:

Hypersensitivity to everyday sounds leads some patients to develop phonophobia - an overwhelming fear of sound or noise. Patients with hyperacusis and phonophobia often spend an inordinate amount of time monitoring sound levels in their immediate environment. Some of these people mistakenly believe that exposure to low-level sounds can cause additional damage to their hearing. A majority of patients with severe hyperacusis overprotect their ears by wearing earplugs or earmuffs (or both) much of the time. Overuse of earplugs or earmuffs (that is, daily use even when the patient is not exposed to hazardous sound levels) can lead to further hypersensitization of the patient's auditory system. A vicious cycle of overprotection- hyperacusis-phonophobia (OHP) develops. Some patients stop going to movies, restaurants, religious events and other functions because sound exposures in these environments are perceived as painful or potentially harmful. Patients have quit working because anxiety about possible sound exposure at work was overwhelming. In extreme cases, patients become recluses, rarely leaving their homes. The vicious OHP cycle can have devastating consequences for a patient's personal relationships, self-image, lifestyle and quality of life.

OHP and TRT:

It is possible for patients to break the OHP cycle. Improvement can be achieved if clinicians are willing and able to spend significant amounts of time with each patient utilizing Tinnitus Retraining Therapy (TRT) protocols. TRT protocols can be customized to address hyperacusis and the particular circumstances of each patient.3

Following is a case report of one patient with extreme hyperacusis and phonophobia who was treated successfully with TRT.

Lota of love glynis

I went to the movies once with earplugs. Approx 1 h into the movie my bad ear started to hurt and when I came out of the movies my distortions had increase like crazy, literally every sounds came with another tone on top of them.

So I think everyone one is different and general statements to tell people to continue to go to them can lead to worsening of symptoms.
One month later I spent a night with moderate music playing (at conversation level) and I did not see any worsening either permanent or temporary. I took a high amount of NAC though.

So I think in every case people should be very careful in the early months of onset.

 

[Sen]

So do you think "living your life" Contributed to your sudden decrease in sound tolerance? Or continuous usage of sound enrichment?

I'm trying to figure out how to live when keeping my T low is my top priority now. I use sound enrichment extensively now. So many questions. So few anwsers. What advice would you give a new sufferer with mild/moderate T&H? Use sound enrichment? Don't?

Your description is pretty much what I planned for the future. Have fun, be sensible about your hearing, protect but not overprotect.
I dont know anything anymore :/

You'll probably be fine. Most people who get H will improve (or at the very least, not worsen) with or without TRT. It seems to be more episodic in nature than anything. I don't see any reason you should stop using sound enrichment if it doesn't bother you.

 

[glynis]

Glynis,your an amazingly nice caring human being but I have to disagree with that post.

It's just more TRT propaganda,using hearing protection can't worsen Hyperacusis like these people say.
You might be temporarily more sensitive in the same way your eyes are when you leave a dark room and walk into the light,but it can't permanently worsen your condition because if that were true nearly every factory worker would have Hyperacusis by now.

Its useful in the cases of phonophobia and helps with breaking that cycle,but other than that it and it's mentality is detrimental to a H patient.

I don't fear sound,I fear pain.

Hi @bill 112,
Edited the clip I posted
.Just wanted people to know TRT can help hyperacusis as its a two way treatment when white noise generators are included in the treatment
Hope that's better........lots of love glynis
..

 

[stophiss]

Hi @bill 112,
Edited the clip I posted
.Just wanted people to know TRT can help hyperacusis as its a two way treatment when white noise generators are included in the treatment
Hope that's better........lots of love glynis
..

Glynis,
Sounds as though you are clearly in the TRT camp. I will say further..not to be too critical of TRT because I believe it clearly helps some...but to me there is a big contingency. That contingency is 'what formula' of TRT is used in terms of sound enrichment...both in frequency and volume. Since no two tinnitus suffers are the same which I am sure you clearly concede with your challenges in particular, I wonder how many TRT therapies are administered wrongly? No two people have the same H and T characteristics. Look at the vacuum cleaner thread. A vacuum can cause anguish for some and residual inhibition for others. So the efficacy of TRT is determined by how well it is being administered. To me this almost seems a bridge too far. There has to be huge variation in how TRT is administered for a given T and H patient. This to me can spell the difference between success and failure.
I hope you respond and kind regards.

 

[Danny Boy]

Informative post Danny which underscores the many faces of H and T. One size does not remotely fit all as we attempt to define H and T. What better dichotomy is there? One person's T goes up due to sound enrichment whether it be a vacuum cleaner or noise generator....and other's T goes down due to this exposure. Is there any wonder why perhaps half this forum believe TRT is rubbish? Because half here may have the type of H and T that is violated by sound enrichment which worsens conditions.

So thanks for adding clarity and will add, I find many of your posts insightful. You write with great clarity.

A last question...and perhaps even related to the passage of time....can you define for yourself how or why your T and/or H improved? You said in the early days your tinnitus was at its worst and I extrapolate from that you must of improved. Can you speculate why other than putting more time between acoustic trauma by a change in lifestyle, i.e. reduction in overall noise level?

Thanks

Reduction was with medication, trobalt and other meds etc...I don't have hyperacusis anymore as managed to cure it totally, it was truly hellish. Trobalt is being discontinued and was dangerous, but so was the level of my tinnitus so I would try anything. I'm looking at some herbal products at the moments/supplements ones which I tried before tinnitus but can help repair damaged neurons, neuron regeneration.

 

[stophiss]

Reduction was with medication, trobalt and other meds etc...I don't have hyperacusis anymore as managed to cure it totally, it was truly hellish. Trobalt is being discontinued and was dangerous, but so was the level of my tinnitus so I would try anything. I'm looking at some herbal products at the moments/supplements ones which I tried before tinnitus but can help repair damaged neurons, neuron regeneration.

As you continue to experiment with herbs/meds directionally correct to neuron regeneration, please share if you experience unexpected improvement.
Thanks

 

[PaulBe]

So the efficacy of TRT is determined by how well it is being administered

To give them their due, this is what the guys at Chat Hyper forum (Rob, Nagler et al) say all the time. Really, done properly its actually an efficient, safe alternative to surgery based on half-educated guesses (tenotomy etc) or... nothing at all. So much though rides on a proper assessment from a practitioner who really understands it and finding that needle in the haystack is hard.

 

[stophiss]

To give them their due, this is what the guys at Chat Hyper forum (Rob, Nagler et al) say all the time. Really, done properly its actually an efficient, safe alternative to surgery based on half-educated guesses (tenotomy etc) or... nothing at all. So much though rides on a proper assessment from a practitioner who really understands it and finding that needle in the haystack is hard.

I always appreciate your comments Paul. You are a wise man.
Completely agree. It just makes sense. People's T and/or H are not the same. Sometimes reaction to sound is in fact the polar opposite. So no way one size fits all when it comes to TRT which puts heavy onus on the practioner to deduce what the appropriate therapy is in terms of sound signature, dB level etc. Honestly and not being an expert in the field, I am hard pressed to believe due to the enigmatic and variable nature of T and H that it may in fact be impossible to develop a precise TRT protocol for a given individual. More a stab in the dark and trial and error...and error can have a cost for some if sound is improperly administered. Maybe a protocol algorithm within a certain framework of efficacy could be developed for a given patient but this would be beyond challenging to determine. I also believe there is possibility that improperly administered TRT can manifest a negative result because of some people's reactivity to sound as exposed in the vacuum cleaner thread. We are not the same. Hearing impairment is a broad spectrum. Tailoring TRT has to be a daunting challenge to even making it effective.

 

[glynis]

Glynis,
Sounds as though you are clearly in the TRT camp. I will say further..not to be too critical of TRT because I believe it clearly helps some...but to me there is a big contingency. That contingency is 'what formula' of TRT is used in terms of sound enrichment...both in frequency and volume. Since no two tinnitus suffers are the same which I am sure you clearly concede with your challenges in particular, I wonder how many TRT therapies are administered wrongly? No two people have the same H and T characteristics. Look at the vacuum cleaner thread. A vacuum can cause anguish for some and residual inhibition for others. So the efficacy of TRT is determined by how well it is being administered. To me this almost seems a bridge too far. There has to be huge variation in how TRT is administered for a given T and H patient. This to me can spell the difference between success and failure.
I hope you respond and kind regards.

Hi StophStophiss.
TRT on the NHS hardly exsists now due to cutbacks as it takes to much time and money.
Most people don't need it and CBT and maskers are more widely used but TRT might be used under special cercomstances
......lots of love glynis

 

[Tom Cnyc]

To give them their due, this is what the guys at Chat Hyper forum (Rob, Nagler et al) say all the time. Really, done properly its actually an efficient, safe alternative to surgery based on half-educated guesses (tenotomy etc) or... nothing at all. So much though rides on a proper assessment from a practitioner who really understands it and finding that needle in the haystack is hard.

As I mentioned in another thread, I know someone who was personally helped by TRT. It's impossible to know if they'd have improved naturally, but clearly it can help.

That said, to the point of ATEOS in some older threads.... the counseling sessions are very spread out and short. It's like, 5 hours tops. How much can REALLY be covered in those sessions? Furthermore, let's think to a time before the internet was available in everyone pockets. Just explaining the Jastreboff model and the limbic system and bla bla bla can take up nearly half that time. audiology at least a 1/3. We're left with very little extra here.

I'm still in CBT, just infrequently. The vast majority of the conversation is really going over the same shit though. I heavily doubt there is some secret sauce to any of the top "trt" practitioners. If tinnitus wasn't so subjective I'd perhaps think otherwise - but reasonably all the practitioner has to work with is the subjective description of symptoms coming from someone in emotional distress. I highly doubt that it's the most accurate information.