Why Isn’t TRT the Holy Grail?

The emotional distress is probably the biggest hindrance to establishing any effective TRT regime. Miriam Westcott in Melbourne who I saw was of the view that no level of TRT could be of any value unless the anxiety was addressed up front. Another thing I've noticed here is that many view the limbic/neurophysiological explanation of tinnitus reaction as somehow a value judgement on their coping skills. There's something kind of pointless about trying to explain complex neurophysio-psychological theories to a lay-person who is a blubbering mess in your clinic because their world has just been shot down in an instant. It seems that you need to be a neurophysician with the kindness and patience of a Nun, and the skill of a top sound engineer to implement high-quality TRT, but instead over here we get audiologists who are usually employed by big chains whose job is to sell expensive devices. At least Miriam understood that different tones require different approaches.

 

I frequently hear certain people talking about how important the therapy is. That it's the most important part of TRT, and that the devices won't help without it. If your DST doesn't improve, one of the common excuses given by TRT proponents is that you didn't see a good therapist, or that you didn't do "real" TRT.

So far nobody has been able to explain to me exactly what the difference is between a good sound therapist and a bad one. The "bad" ones boast the same success rates as the "good" ones. So far nobody has been able to explain to me the difference between "fake" TRT and "real" TRT. If a "good" clinician administers a modified approach to sound therapy, wouldn't that deviate from "real" TRT anyway?

What would a good therapist be able to tell me that I haven't already learned on my own or from the bad therapist? Moreover, what could ANY therapist possibly tell me that I don't already know? All of the information is available instantaneously for free on the internet, and isn't that complicated to begin with.

 

I agree with a lot of what you say. As you and I both know having the TRT book: nowhere in it does it mention this treatment is a cure for tinnitus and unfortunately there are many people that expect that. Perhaps because this treatment is expensive and for it to work properly the duration should be for 1 to 2 years. I have had TRT twice with good results. The first time was 20 years ago when I first got the condition. I had very severe tinnitus with excruciating hyperacusis. It was so bad conversation with people at times was painful to my ears. Wearing the white noise generators the hyperacusis was completely cured in two years. The tinnitus reduced to a level I hardly heard it.

In 2008 noise trauma increased my tinnitus to very severe levels worse than the first time but the hyperacusis did not return. I had two years TRT for the 2nd time. It helped but the tinnitus didn't reduce to it's former levels and this time I was left with variable tinnitus that I have mentioned many times in the is forum. It can be completely silent, mild, moderate, severe and very severe. However, it rarely reaches very severe levels now. According to my hearing therapist and ENT consultant, they don't often see people with my type of tinnitus. I take clonazepam when my tinnitus is severe and after about three days I'll take the clonazepam usually for just a day or two and then the tinnitus normally starts to calm down.

It also mentions in the TRT book, success rates with this treatment will vary between people, and there will also be some that cannot be helped by TRT . It goes on to say if a person has a purely negative out look on the treatment to begin with, or expects a complete cure it's unlikely they will make any improvement.

As I have mentioned in my post on this forum titled: What is TRT and when should it be started? : It is a two part treatment consisting of sound therapy and counselling. Through regular counselling sessions with a patient, there is a gradual retraining of the way the person thinks about tinnitus and to treat it as non life threatening. The Hearing Therapist does this in a controlled and precise manner so that the patient feels relaxed and not pressured. In many instances the tinnitus is gradually pushed further into the background making it less prominent. Therefore, it must be stressed and understood, this treatment takes time.

Michael

 

There are a lot of places however that boast that it is a cure for Hyperacusis or that it can greatly improve it.

They tell you things like"your ears are not more susceptible,the fight or flight response"yada yada yada.

I got H back in 2014 and I did find a good TRT audiologist here in Ireland,two years later and I was much much better but then I started getting out more and more,never exposing myself to stupid amounts of noise but I slowly but surely began developing more and more strange symptoms before I totally collapsed in January this year.I went bowling and to car shows or maybe a few restaurants and seen family but that was about the height of what I exposed myself to but yet I began to go downhill fast,faster than I could realise what was going on.
Why did it help me get way better only for it to worsen sevenfold?I wasn't expecting a cure for my T,it had become mild and non intrusive but why did my H worsen from barely anything at all?
There's also a video on YouTube,Hyperacusis Research/Jesses story and in it he states"The most success I had was with TRT,but then I began to live a normal life again,this was a mistake as you are susceptible to getting it again or worsening it"
Something along those lines,I just don't get how it makes people improve to a point where noise doesn't bother them only for noise to make them worse?Seemlessly harmless noise?

What was your second noise trauma if that's ok to ask?

 

Just to be clear, I'm not talking about TRT in the context of treating tinnitus. I'm talking about it in the context of treating hyperacusis. This is the hyperacusis and ear pain section of the forum.

Tinnitus for me was very easy to overcome, despite how unrelentingly piercing and loud it is. I was terrified by it for about half a year, and then I stopped caring. Every now and then it will bother me, but most of the time it doesn't. This occurred with no treatment.

 

@bill 112

I am a HIFI enthusiast and was listening to symphony late one evening. Turned up the volume as I was enjoying a particular piece and everything seemed fine. Finished and went to bed and in the morning noticed my tinnitus was quite intrusive. As I have mentioned, It had reduced to level I hardly ever heard it. Over the following days and weeks the intensity grew louder without any break and knew something was wrong. I was seen at ENT and started TRT for the second time.

As I type my tinnitus is completely silent. Tomorrow it could be mild or moderate and that doesn’t bother me in the slightest because I have habituated. When it is severe I can cope with it for a while but if it doesn’t reduce then I have to take clonazepam then it usually calms down.

Personally, I don’t believe counselling helps reduce hyperacusis. As Sen rightly pointed out to me the other day, it is a physiological problem and that’s the reason, Jasterboff recommends the wearing of white noise generators for up to 10hrs a day, and using a sound machine for “sound enrichment” at night. Over time the auditory gateways or receptors, are desensitised and close down which is what happened in my case. My severe hyperacusis was completely cured in two years.

If I may say so Sen, I know you use sound therapy 24/7 and can’t understand why your hyperacusis hasn’t reduced. I also believe that you are not a negative thinking person for I have read your posts and don’t see signs of it.

Michael

 

One day TRT will be viewed the same way bloodletting is. Namely as complete nonsense.

 

I've improved in the sense that I don't get as angry or upset when I'm exposed to uncomfortable sound anymore. I suppose this type of improvement was inevitable with or without sound therapy. I've adjusted to my symptoms over time, and they bother me a little less, but the symptoms themselves have not changed much. Lately they've been waxing and waning. Maybe this is a good sign.

One symptom that seems to have improved is my dizziness and vertigo, but I won't be able to assess this (or any of my symptoms, really) with any accuracy until I've been off benzos for a while. Knock on wood.

Contrary to what you've said, I believe I am a negative thinker. I'm certainly a nihilist, and have been for much of my life. I don't know what this would have to do with decreased sound sensitivity, though.

 

Then what about Charles Libermann and his theory of synaptic damage and noiception being the cause to tinnitus and Hyperacusis to which there is currently more evidence for especially when compared to the Jastrebroff model?

A theory is meant to be an idea to which you stick facts,the more facts you stick to it the more concrete it becomes.
Where's Jastrebroffs facts?As far as I can see it's just an idea but there's no substantial evidence to back up anything he is saying,it's all just a wild guess on his part.Proof of this is the fact that Jastrebroff and his cronies said for years that"the inner ear has no pain sensors"
Fast forward to 2016 and it's looking like there are indeed pain sensing nerve fibres in the inner ear so what is he going to say when it's confirmed if it hasn't been already?"Ohh sorry I was wrong about that part"?

That alone causes his theory to fall straight on its head,if he's wrong about that crucial part then what else is he wrong about?It scares me to think about it.

His idea for the pain is the middle ear muscle tightening thus causing pain,but what about my pain then?
My pain is a stinging burning pain that goes through my ears,over my entire head and down my spine and into my feet.This is neuropathy or neuropathic pain and noiceptors send pain signals ONLY when they are trying to warn you of potentially damaging stimuli.This pain only comes from sound and nothing else,the more sound the more intense the pain throughout my body.

My ears are damaged and can't handle sound like they use to which inturn now causes these noiceptors to fire extremely easily as even low sounds are now potentially harmful.Its not a crazy thing to even consider being true,in fact it's quite believable and there's more than enough evidence to back it up.

I believed in the Jastrebroff model like you Michael,I'm not a day one sceptic trying to pick it apart because I simply don't like it,but more so because I've lived it,wore the t-shirt and ended up much worse as a result of it.I know what happens when it goes wrong,there's no going back after it happens and the moment of clarity hits you like a tonne of bricks,that this theory was just that,a theory with no substance,that's potentially extremely harmful to certain H patients with its mentality and it's preachers.

Just go have a look at the H network,I had to get off it I was that sickened by what I read.

There was a guy there who had super severe H,talking was physically painful but he was now feeling somewhat better a year or so later.He still had sensitivity but was really eager to get back playing with his band who were getting impatient about him being off with this"ear problem"
They were telling him that he will get better and better over time after desensitisation and some were even encouraging him to go back playing in his band again!
It's insanity,this guy has a sound injury inside his ears and they're encouraging him to go back playing in his band?A year since it all started for him and he was by no means recovered at all and that's what they preach?May aswell tell a burn victim to walk straight back into a fire if he wants to heal.

 

I am pleased to hear that you have improved @Sen because I know how debilitating hyperacusis and tinnitus can be when they are severe. I didn't know that you experience dizziness and vertigo, and this could point to something else that is going on. I never picked up from your posts that you are a negative thinker. I hope that you continue to make steady improvement, in the way that you described.

Michael

 

I found your post interesting. I haven’t read the Charles Libermann’s theory or viewed the hyperacusis network but will take a look.
There is truth in what you say about TRT being based on just theory, but I believe it worked for me and twice in fact. If a person feels they are getting benefit from it or believes in the treatment and wants to go on the programme, then I wish them the best of luck and I’m sure you would too, and sometimes that’s all one might need. Call it a psychological boost. The distress I was in 1996 caused by the cacophony of noise I lived with 24/7 was pure agony, and would have given anything to get some relief. I was fortunate to get TRT.

I am sorry to hear of the stinging, burning pain that you are experiencing and hope things start to improve for you soon.
All the best
Michael

 

I don't think Jastreboff is wrong as such, I just think he's incomplete and his research and theories make for a starting point in understanding, not the end point as seems to be the case with many of his adherents.

 

I don't think Jastreboff is wrong and believe the man is genuinely trying to help. However, when some people are in distress, discomfort or not happy with their life for one reason or another. It can be easy to get disgruntled, upset and even angry because they see no answer or a way out of their situation and I understand that. They want to vent their frustrations and forums and other social media platforms are perfect places to do that because often they are looking for someone to blame for their plight. It is one of the reasons I would never run for political office in my next life because you can't please everyone. I will now get off my soap box.
Michael

 

In England we have ENT,audiology and white noise genergenerators and hearing aids and CBT and medication for anxiety and depression and the gold star treatment to get you coping emotionally with your tinnitus and hyperacusis and can not cope day to day is TRT.
TRT is not a cure it's retraining the brain to help you cope better and can help hyperacusis.
Jasterboffs book gives you all the information if want to buy it....lots of love glynis

 

Ops sorry added hyperacusis too...lots of love glynis

 

Bill:

People with normal hearing live under that same principle—noise doesn’t bother them, yet it can still be damaging their hearing. They just don’t know until later.

Think of hearing health as represented on a scale from “Bad” to “Normal”. Many with severe hyperacusis might place themselves at the “Bad” end of the scale. Over time (if they are fortunate), their hearing health may move toward normal. While it may seem great to be “normal”, this has a built-in problem: A normal hearing system generally does not warn you when you are damaging your hearing.

A high degree of comfort for volume is a hazard for anyone, but especially for those with a previously damaged hearing system.

Ironically, a common goal for those with hyperacusis is to raise loudness discomfort levels so these people can again mix with others and lead normal lives. In reality, however, they may only “appear” normal. Like an athlete who strengthens only one body part, hyperacustics who intentionally raise their LDL’s to high levels, and then jump back into the crowd, may just be accidents waiting to happen. They have the illusion that they are ready for anything, but they are not.

I know people who, many years ago, thought they were totally cured of hyperacusis—to the point that they genuinely (and deliberately) forgot they ever had it. And later, when their hyperacusis recurred due to sound exposure, they fell hard, because they had built entirely new lives and careers based on their “cured” and “normal” hearing.

Unfortunately, you can look through countless articles on hyperacusis that emphasize methods for improving LDL’s, and not see this danger mentioned anywhere.

 

Jastreboff trained clinicians would call this either a setback or, if it is unresponsive to TRT or broadband noise therapy, misophonia. Low LDL scores are now considered misophonia if LDLs do not improve with TRT; I'm not joking.

To me it seems like a cop out, especially the latter outcome. A convenient way to avoid having lower success rates. If it isn't hyperacusis causing the problem, it cannot count as a TRT failure, right?

Jastreboff told Jason DiEmilio that his severe ear pain couldn't possibly have been caused by noise. When TRT didn't work for him, they gave him a new condition that cannot be treated with TRT, and success rates remained unaffected.

Later we learned that according to Nagler, Jastreboff was not even aware of DiEmilio's suicide, despite DiEmilio's family contacting him about it.

 

I'd forgotten those threads Sen. Still interesting, and still as unresolved as ever. I've said before that I think TRT actually draws resources away from other potentially productive lines of research and treatment.

 

Some of the doctors who are, in theory, professionals of TRT will tell you "go home and listen to a sound of your choice, turn it up the most you can, when you feel it is too much, turn it down a little. Start there and then every week try to turn up the volume until you recover the normal levels of sound tolerance".

Seriously, there is nothing scientific behind that approach. Hyperacusis is not the same as, let's say.. fear of spiders. Progressive exposure does not work that well to get used to sound, basically because every day there are common sounds that are dangerous sounds, too loud, and people walk listening to them all the time. Think of construction works... how many times we see people passing by construction works with no hearing protection? If the construction workers are wearing earmuffs, should we think that pedestrian could use earmuffs as well? And this kind of things happen daily.. the noise of traffic, sirens, airplanes, boats, PA systems in public transport etc etc There is too much noise pollution and many of those sounds are objectively loud and over time will make many people have hearing problems, be it noise induced hearing loss, T or other problems. Hyperacusis at least is rare..

 

You're making an interesting point, but remember that the amount of exposure (i.e. time) is important. A pedestrian walking through a construction zone is only going to endure loud sound for a short period of time. The construction workers on the other hand are there for many hours.

 

Jastrebroffs TRT has somewhat scientific evidence on its side and that's why it's overly accepted as the go to treatment simply because there's no other scientific evidence to oppose it.

That of course was the case until recently,when they discovered synaptopathy and auditory noiception,according to Jastrebroff there's no pain fibres in the ear,how the hell is he going to explain that one when it gets confirmed and thrown right out in front of him?His whole theory will collapse on itself as a result.

Until then it will continue to be accepted as there's simply nothing else to offer,it gives hope to people that something can be done when in reality time,healing and hope is all there is.
If anything WNG's are actually harmful to people as Homeo proved in another thread,it actually increases synaptopathy so your basically just adding insult to injury.

The evidence in his favour is weak from what I can find,apparently scans of brains that had been exposed to loud noise showed hyperactivity in the auditory brain as a result.Its this that he and the likes of Julian Cowell base their methods off of,that it's a nervous system activation and needs to be de-sensitised by gradual noise exposure and relaxation.

The whole thing is based on that but he never seems to ask why there's hyperactivity there,it's almost like he assumes that it's in the brain and brain only and isn't being fed from anywhere else like the auditory nerve etc.

When the research picks up him and this insane theory will be laid to rest once and for all,I have huge hate against this as it basically screwed what life I had left.

 

Westcott is judging from her writing and emails, a pastiche artist that accommodates the time she wastes reading Jastreboff with the common sense of the real world.

I just had an argument with Rob over at chat-h and yuku for which I was banned under bullshit pretences. I threw fact after fact at the creepy twat and time after time he'd come back to me with bullshit sophistry.

Maybe some TRT fanboi can tell me why Harold Kim allegedly claims either the tensor, stapedius or the levator can be the culprit for ear vibrations, and yet the levator has nothing to do with the acoustic reflex. This link with the acoustic reflex is all Jastreboff is clinging onto to save his career.

TRT and other moronic practices like Hyperacusis Activities Treatment- where you drop things down over and over again to train yourself to improve your ''anxiety''- is quite simply retarded, and damaging. I bet it's caused quite a few deaths that went conveniently unreported.

 

@japongus
When you kill yourself 'cause you have an unbearable issue, they just say it's a suicide due to depression... :/

 

Its worth visiting the site just for your efforts alone. The more you dig in the more he digs in which makes it even more fun. The internet at its finest.

 

Admittedly Japongus, I do have a lingering emotional flame for Miriam as she was the first to even acknowledge my reality whan I was truly desperate and lost. Down the track though, I'm less convinced of the value of noise based therapies, simply because basically no useful diagnostic model exists beyond the basic audiology test so no-one truly knows what it is that is being or should be should be treated. Maybe TRT has a place with relatively uncomplicated tinnitus with constant tones and no hyperacusis, but if the aim of treatment is to "de-sensitize" the auditory system then an auditory system that keeps pulling out sound and pain-based "remember me?" surprises is not going to respond so well.

 

TRT is a two part treatment for tinnitus and Hyperacusis and is not a cure but the weekly sessions help you become more settled emotionally and cope better day to day adapting to your sound and emotions and ear sensitivity and has helped so many people but again not everyone and the treatment goes on for months but due to cutbacks it's not as available on the NHS and costs a lot to go private.
Most people don't need it but people in constant distress finding life hard to cope with it's one option for help along with CBT and hearing aids and white noise generators.
Giving people options for help with tinnitus and Hyperacusis then comes down to the individual on what route they take and gives them hope as we all have our own stories and what helped us ....lots of love glynis

 

Good discussion and what I hoped for. Those of us with T and/or H...I have both..that share their views.

I will add my thoughts. For convenience, many tend to think in binary terms...either or. Life doesn't work that way...or rarely. There are shades of grey...sometimes multiple.
To me a signature point and why camps are divided is Bill's statement below who perhaps unknowingly defined why camps are divided on why TRT isn't the holy grail. He in fact proved the opposite.

Bill wrote:
Then what about Charles Libermann and his theory of synaptic damage and noiception being the cause to tinnitus and Hyperacusis to which there is currently more evidence for especially when compared to the Jastrebroff model?

This to me is the cornerstone misunderstanding which leads to skepticism about TRT. To me, there is no reason why Libermann and Jastrebroff can't co-exist and in fact, in the vast majority of cases they must co-exist. The two models aren't incompatible, but rather are precisely compatible.

First Libermann. I agree with the thesis that synaptic damage is at the root of my tinnitus and hypercusis. I believe it for myself that my T and H are based on neuropathy. I also have it in other parts of my body FWIW. I will go out on a limb and say many if not most have neurologically based T and H. Some with dysfunctional hearing apparatus like lost frequencies due to cochlear hair loss have neither T or H for example. So I agree with Libermann.

The signature point to me is, if synaptic damage is the rudiment of T and H for many if not most, why would TRT be incompatible? Neuropathy doesn't affect the entire brain. Brains morph in neurology everyday, the foundation of neuroplasticity and why we contracted T and H in the first place. Why can't the brain continue to change based upon a neurological condition by virtue of changing a person's environment by exposure to a changed sound signature that redirects focus away from tinnitus? A person with head trauma can come out of a comma after two months due to neurological damage and I believe with a conducive environment and btw, not incompatible with the element of time as well, I believe a person can change in a positive manner for either or both T and H if one subscribes the notion of neuroplasticity based upon environment.

Lastly, because of the subjective nature of T and H, many believe...I do...its difficult if not impossible to prove TRT is effective. Its certainly difficult. But...there have been perhaps thousands of anecdotal accounts that TRT is effective...and certainly not for all. I draw your attention back to the vacuum cleaner thread. T and H of given individuals varies greatly. In fact, it maybe safe to say that no two people on this forum have the same condition. Half the respondents to the vacuum cleaner thread said they can't tolerate the vacuum and half it improved their tinnitus short term by residual inhibition. Stands to reason as a correlation that TRT will help some and perhaps not others which contributes to the divide in agreement on this forum. But to say that if synapse damage is at the core of T and H for most, that a given therapy like TRT which changes the environment of the brain to retrain..to call TRT rubbish is as wrong as saying its the holy grail for all. It is someplace in between due to both the variance in administration of TRT and how a given person may respond based upon their specific T and H and neuropathy, which is precisely how and why camps are divided.

 

But auditory synaptic damage is just one theory, the middle ear can just be tense and not the right tonicity. In which case sound therapy is nonsense because otherwise it would also be curing parkinsons or a broken foot. Neuroplasticity always comes up when shrinks are in the game, it's part of the blank slate idea of the modern world, but you just have to look at any thread to find people conflating ''cure'' with ''it's like a yoga class''. For severe h, I only believe in money, to shield you and to lead a quiet life. It's clear to me TRT and CBT is musical chairs, like a spiritual retreat for yuppies. The yuppies here aren't the patients but the doctors.

 

The more sound I expose myself to no matter how small that may be the worse and worse I get,no amount of sound is going to retain my brain at this point.

Also there's susceptibility,if someone fully recovers from H they're told they're no more susceptible to damage than anyone else,well that's simply bull as I fully recovered then got around more noise that wouldn't harm anyone else but I slowly but surely got worse all the while convinced that I was keeping my tolerances up,that if I started wearing earplugs for family gatherings that it would worsen me as I could easily tolerate it so wearing earplugs was a bad thing,it was counter productive and the more and more I wore them the less and less I would tolerate.

Obviously avoiding dangerous levels was the goal but these normal listening environments that are deemed safe is what slowly killed my ears.

 

Here is one of our biggest issues. They all tell us this with certainty that normal sound can't hurt us further, and yet all the while, they don't know. They don't even know what the mechanism of damage truly is, and yet they dish out confidant advice based on.....on...rainbows and unicorns. Some of us won't be hurt any further by normal sound exposure, then there's Bill and I'm sure others.