Why TRT Fails People ...

[Rhea]

I personally found TRT failed for me because it was based on addressing distorted thinking and as far as I am concerned my thinking is not distorted but actually based on solid facts.

For example I was asked to change such"distorted thoughts" as " I can't enjoy concerts anymore" - now for me this is not a distorted thought....I would likely further damage my hearing and get a tinnitus increase and even if I didn't I would not be able to enjoy a concert as I would have to be plugged and listen to very loud t for the duration. Hence TRT only works in my opinion to challenge distorted thoughts and not those based on experience and fact.

 

[MattK]

This is the reason I ask very little regarding trt...if you have objections, a different point of view, or maybe just a valid question/concern you are considered hostile toward trt, dr Nagler and the concept of habituation" or you are "bashing" somebody. These so called "hostile" people ask a lot of questions that I personally would like answers to as well. It also gives a chance for the other party to explain/clarify certain points....This is called a discussion, there are a lot of things to be learned by discussing things. This is why we are all here...I thought anyway.

It's not that ATEOS's questions aren't good, it's the way he asks it.

 

[Dr. Nagler]

I personally found TRT failed for me because it was based on addressing distorted thinking and as far as I am concerned my thinking is not distorted but actually based on solid facts.

TRT is not based on addressing distorted thinking. CBT is based on distorted thinking.

TRT failed you not because it is based on addressing distorted thinking; it isn't. TRT failed you because Dr. Jastreboff never copyrighted the name and never established certification and standardization. So anybody can "do their thing" and call it TRT.

Dr. Stephen Nagler

 

[Mr. Cartman]

This is the reason I ask very little regarding trt...if you have objections, a different point of view, or maybe just a valid question/concern you are considered hostile toward trt, dr Nagler and the concept of habituation" or you are "bashing" somebody. These so called "hostile" people ask a lot of questions that I personally would like answers to as well. It also gives a chance for the other party to explain/clarify certain points....This is called a discussion, there are a lot of things to be learned by discussing things. This is why we are all here...I thought anyway.

I agree Telis, I tend to back away from TRT related discussions as well..

 

[Martin69]

If I would live in or near Atlanta, I would directly drive to Dr. Nagler or Dr. Jastreboff and do TRT with him.
Because I believe that this is the best treatment we have.

When I said, I was in a tinnitus clinic in Germany, I was told it was no real TRT. I don't know if there is anyone in Germany who is a real TRT clinician, because I don't know if he/she was trained by Dr. Jastreboff. We have another T clinic in Germany where the best T experts in Germany work. I still don't know if this is real TRT. How should I know? The next TRT clinician is probably J. Sheldrake in London.

I think the main cause for this discussion here is that people want to become better and they want to do TRT. But either they do not have the money, they don't know if there is any real TRT clinician in their reachable distance at all or they cannot hop into a plane (for various reasons like work, family etc) visiting one of the 4-5 real TRT clinicians in the world.

We all want to get better, we all suffer. Therefore we desperately try getting help here, we read books about CBT, TRT, depression and so on. And we are told, we do not do it right. And we do not know. How should we?

This discussion does not help anyone. It makes me sad. Because I have always the feeling that Dr. Nagler wants to help us as good as possible. Of course I also feel oftentimes desperate if I do things correctly.

I had a long phone call today with a long-term sufferer from the yuku board. He explained to me that even after one year with loud intrusive T, he cried every day for 30 minutes and was still full of anxiety. This helps me more than any TRT discussion. Because this tells me I am maybe not normal (others can be faster in habituation than me) but there are not few who went through the same. And that my poor brain needs more time habituating.

Making a long story short, I think of course it would be best having doing online-TRT with us. At least something like: You are in this category, do this and that with sound enrichment, read this and that paper because this is what we discuss in the first counselling session, do not react to T and so on. I would pay for this, no doubt.

As I have understood, this is not possible since the first session must always be face to face. So there will never be any online TRT - which is bad luck for most of us (reasons above).

This is just my opinion, sorry if it does not reflects yours.

 

[Steve]

This is a very polarising issue, and that is understandable. We all want relief and we all have suspicion as the quality of data for the majority of treatments is poor.

There is plenty of room for debate here but half of the thread would have been conducted in raised voices or shouting if we were sat around a table, that's just unhelpful. This is a place for debate and I think that the evidence should be fully and properly debated without resorting to anger, however emotive the subject matter.

The Cochrane Collaboration have conducted several systematic reviews of tinnitus treatments, TRT is on of them. They found that only a single study (Henry 2006), from 335 eligible studies, was able to be included, and this study was "low quality" with "a high risk of bias". It can be viewed here http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD007330.pub2/abstract

Those two phrases above are critical when dealing with an intervention that is based on the counselling aspect.

From the review:

Only one trial (123 participants) was included in the review. Several excluded trials did not follow the strict protocol for TRT, evaluating instead a modified form of TRT. The included trial showed TRT to be more effective than a tinnitus masking (TM) approach.

The fact that only a single trial was identified, and that this trial had methodological flaws particularly with respect to allocation bias, means that it is not possible to reach a firm conclusion regarding the use of TRT.

The evidence does not exist, in my opinion or that of Cochrane, to claim an 85% success rate.

TRT has no better evidence than the many other treatments that are discussed on here, from a variety of different sources.

Steve

 

[SweetPeach]

As I have understood, this is not possible since the first session must always be face to face.

trt hasnt been proven to be effective.
http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD007330.pub2/abstract
only one low quality trial, you see? how can 4 trt clinicians in world say that face to face session is required? 100% remote trt might work equally well. WHO KNOWS? of c the clinicians say face to face sessions are required (they can charge more money that way)

trt clinicians are all delusional. blindly believing what the jastreboff says.

 

[Michael2013]

The fact that only a single trial was identified, and that this trial had methodological flaws particularly with respect to allocation bias, means that it is not possible to reach a firm conclusion regarding the use of TRT.

The evidence does not exist, in my opinion or that of Cochrane, to claim an 85% success rate.

TRT has no better evidence than the many other treatments that are discussed on here, from a variety of different sources.

This reminds me of the debate in the LLLT thread. I remember asking about TRT studies, and this was the response:

I'm not arguing whether or not there has been a double blind TRT study. There hasn't. Up to very recently it has been impossible to do one, although industry finally came up with the technology three years ago, and a multi-center double-blind randomized prospective TRT study is presently being conducted in the US Military. As it should be. (Think about it - how do you blind a tinnitus sufferer using broadband sound devices set exactly as instructed in TRT and blind the person doing the instructing at the same time!!! The technology for doing so had to be incredibly innovative.)

I don't think I ever heard more about this US Military study that is being conducted. I wonder if @Dr. Nagler can provide more details of this or if the results are known yet? I'd very much be interested in reading the results, or learning more about when they would be available.

-MIke

 

[Dr. Nagler]

If I would live in or near Atlanta, I would directly drive to Dr. Nagler or Dr. Jastreboff and do TRT with him.
Because I believe that this is the best treatment we have.

When I said, I was in a tinnitus clinic in Germany, I was told it was no real TRT. I don't know if there is anyone in Germany who is a real TRT clinician, because I don't know if he/she was trained by Dr. Jastreboff

Martin, when I met with Dr. Jastreboff earlier this week, I was thinking about you and asked him if there was anybody in Germany in whom he had confidence as a TRT clinician. He suggested Gabriele Lux-Wellenkoff in Frankfurt am Main.

Hope this helps.

Dr. Stephen Nagler

 

[Dr. Nagler]

I wonder if @Dr. Nagler can provide more details of this or if the results are known yet? I'd very much be interested in reading the results, or learning more about when they would be available.

I spoke with the PI, Dr. Craig Formby, about it a few months ago. He said that they are still three years or so from breaking the code and crunching the data. I asked him if he had "peeked." He said he's been greatly tempted to do so, but he has not.

Dr. Stephen Nagler

 

[Markku]

For those interested,

Rationale for the tinnitus retraining therapy trial

 

[Michael2013]

I suppose I misunderstood. I thought the study was already in progress.

-Mike

 

[Martin69]

Martin, when I met with Dr. Jastreboff earlier this week, I was thinking about you and asked him if there was anybody in Germany in whom he had confidence as a TRT clinician. He suggested Gabriele Lux-Wellenkoff in Frankfurt am Main.

Hope this helps.

Dr. Stephen Nagler

Thank you Stephen. Much appreciated.

 

[2131e]

I went to see an ENT trained in TRT. After I saw him I could see why the counselling aspect is important. It is not just about demystifying the phenomenon of T so that we learn to react in a benign manner. It is also, I think, about helping the patient to begin the process of learning to not have an automatic fight/flight reaction to the sound. It is asking the patient to make a pretty significant psychological shift in their reactions. Basically like learning a new habit. And when you are learning a new habit that has to do with your emotions (i.e. your fear response), one thing that really helps is being able to talk about the problem and the new habit with a person who knows about the problem and who is compassionate. In my view a TRT specialist who wasn't compassionate and wasn't willing to start off by acknowledging with the patient that the T is really f-ing distressing would be unlikely to provide much help. But its the same thing with therapists who do CBT. CBT is a great protocol for certain sorts of issues. It helps a lot of people. But a CBT practitioner with no compassion can't achieve a thing, no matter how many books s/he has read. Like finding a good therapist, it is worth I think putting in the time to find a good TRT practitioner.

Just my two cents: I felt really encouraged with the TRT person I saw and since then my anxiety about my T is half of what it was, and it bothers me half as much as it did. It was only some tests and a hour conversation. I'd have to say that most of what allowed that shift to occur was not just learning more about T and how it is caused and how it activates your flight/fight response, but also and more importantly being able to tell someone who was a good listener about how distressed I was and have them say "okay, well if this is bothering you this much then we need to find a solution. Let's work on this together and talk together about where we should start and what our next steps are from here." It was so encouraging.

 

[2131e]

I'd also note that I've found Dr. Nagler's posts on this forum so encouraging too - for similar reasons.

 

[Jay M]

@attheedgeofscience
I don't understand your focus on anti-TRT? I've read your journal about STEM-CELL and LLLT and really appreciate the info you've provided. I'm even interested enough to consider those types of therapies bc of you but I find you to be so helpful and aggravating at the same time. I've even tried to communicate with you but your PM was or still is off.
Like you, everyone is willing to try something, anything. I'm a realistic person and think of TRT and actual experimental treatment like science and religion, they both exist and have their place. You're pro-science and that's cool but don't let your campaign of dislike for TRT over shadow your shared and well documented experience and future testimonies about other treatments. I would like to continue reading that stuff from some one who seems to be credible. In my journey in life so far I've learned that it's not all the goods things I've ever said and done that people remember, it always seems to be the last thing I've said and done. You're great for generously sharing the info you have but keep focus on that experimental science stuff and don't worry about the other stuff.

 

[Jay M]

Im convinced its a money game with Audiologists and "Au.D.'s. They are just hearing amplification salesman with a higher level of education. With significant advances in science of hearing disorders and real advances in cochlear and cilia hair technology their jobs will fall to a more appropriate title Hearing Aids salespeople. But I do feel that the acceptance of TRT as a viable "cure" for tinnitus has limited advances in the field considerably, for many years.

Every things a money game, from the moment your born to the time they put us in the dirt. People do have to find a balance on how to make a living and doing something the at least moderately like doing.

 

[dan]

I spoke with the PI, Dr. Craig Formby, about it a few months ago. He said that they are still three years or so from breaking the code and crunching the data. I asked him if he had "peeked." He said he's been greatly tempted to do so, but he has not.

Dr. Stephen Nagler

lol, it'll take them 3 years to figure out how to sugar coat the results.

 

[attheedgeofscience]

lol, it'll take them 3 years to figure out how to sugar coat the results.

Agreed. I just checked my financial sources; Auris Medical has re-scheduled their data release for the phase III trial of AM101 for "early 2016" (originally it was due for EOY 2015). By the time the TRT figures are available, the three major otology pharmas (AM, OTO, AUT) out there will have completed their clinical trials...

 

[kmohoruk]

I'd also note that I've found Dr. Nagler's posts on this forum so encouraging too - for similar reasons.

Agreed!

 

[here2help]

@Rhea, if a doctor addressed what he or she called "distorted thinking" with you, that is not part of TRT. It is likely that if someone is having a tough time with tinnitus, he or she may think and feel differently as a consequence of habituating tinnitus, but it isn't a goal of TRT to work with a patient to examine, challenge, or re-calibrate one's thought process.

here2help

 

[Stina]

I did not really read the comments above but I just wanted to say smth I have thought about when it coes to TRT. I think it has a lot to do with acceptance: the understanding that life might not be the way we want it to be but somehow we have to carry on anyway. Therefore I believe it might be more difficult (although by no means impossible) to achieve habituation for perfectionist.
I could be wrong of course and I do not mean to make generalizations but thats simply a thought I have had.

 

[attheedgeofscience]

I think it has a lot to do with acceptance

I think it has to do with money. And a lot of it.

 

[attheedgeofscience]

I don't understand your focus on anti-TRT?

Well... perhaps this post already written by @Steve helps...

https://www.tinnitustalk.com/threads/why-trt-fails-people.6389/page-3#post-69632

As such, I don't have anything against what people voluntarily choose to do in terms of tinnitus treatments - TRT or not. But I do have a problem with a certain member on this board who likes to mystify what TRT is, as well as claiming TRT is only TRT when done in a clinical setting according to a specific protocol. A protocol which (only) consists of a day's worth of non-therapeutic counselling. And a hefty price tag.

You're pro-science and that's cool but don't let your campaign of dislike for TRT over shadow your shared and well documented experience and future testimonies about other treatments.

"You have enemies? Good. That means you've stood up for something, sometime in your life."
--Winston Churchill, statesman & war hero

I would like to continue reading that stuff from some one who seems to be credible.

As one of the very few members on this board who has documented everything I do, I would say my credibility is pretty much unassailable. As a counter example, a few days ago, a certain member on this board released his self-worded financial disclosure statement. Such acts have little value without documentation.

The real reason for my return to TT is actually because I against all odds managed to get hold of a doctor associated with the AUT00063 clinical trial in the UK, and who would be willing to obtain a 30-day treatment sample of the clinical trial drug (ie. similar to the AM101 off-label treatment I was involved in earlier this year). It takes a bit of paperwork (and money!) - but it can be done. The off-clinical trial treatment can only be commenced once the last candidate of the clinical trial has completed the first week of his/her treatment (for legal reasons). Obviously, I would not want to miss the opportunity of sharing the experience with TT - hence the reason I have decided to make a "guest appearance".

Is the above "story" true or not true? How can you tell without documentation? Documentation which I have not provided to the staff of TT this time. It would real nice to know if indeed the above is true, wouldn't you say? I hope this becomes a lesson to some members on this board - a lesson to those who are willing to believe anything they read.

You're great for generously sharing the info you have but keep focus on that experimental science stuff and don't worry about the other stuff.

At age 37 - which @ampumpkin was kind to point out to the forum - I believe I am quite capable in determining where I should place my focus.

 

[amandine]

Well... perhaps this post already written by @Steve helps...

https://www.tinnitustalk.com/threads/why-trt-fails-people.6389/page-3#post-69632

As such, I don't have anything against what people voluntarily choose to do in terms of tinnitus treatments - TRT or not. But I do have a problem with a certain member on this board who likes to mystify what TRT is, as well as claiming TRT is only TRT when done in a clinical setting according to a specific protocol. A protocol which (only) consists of a day's worth of non-therapeutic counselling. And a hefty price tag.




"You have enemies? Good. That means you've stood up for something, sometime in your life."
--Winston Churchill, statesman & war hero




As one of the very few members on this board who has documented everything I do, I would say my credibility is pretty much unassailable. As a counter example, a few days ago, a certain member on this board released his self-worded financial disclosure statement. Such acts have little value without documentation.

The real reason for my return to TT is actually because I against all odds managed to get hold of a doctor associated with the AUT00063 clinical trial in the UK, and who would be willing to obtain a 30-day treatment sample of the clinical trial drug (ie. similar to the AM101 off-label treatment I was involved in earlier this year). It takes a bit of paperwork (and money!) - but it can be done. The off-clinical trial treatment can only be commenced once the last candidate of the clinical trial has completed the first week of his/her treatment (for legal reasons). Obviously, I would not want to miss the opportunity of sharing the experience with TT - hence the reason I have decided to make a "guest appearance".

Hi - hope you dont mind me asking you this.
I am toying with the idea of doing the am 101 trials. It is a very long way away for me to go and very difficult to achieve.....but I am feeling so desperate that I would cut off my leg to do something aobut this. You said that you took part in the am 101 earlier this year. Did it help? Is it any good? Sorry for asking you this but just need some guidance here and you seem to know whatl you are doing and talking about.
Could be that i am becoming obsessional about this.
Had xanax but have decided to stop taking all meds.
What do you thnk? Did you do meds?
My T seems to be getting louder each day but I am also doing nothing but sitting in bed all day on the internet looking up info about it.
My local doc yesterday was more than useless - he shouted at me and was very rude. I am in france. I speak french okayish. Because of the worn out condition that i am now in, I asked him if it was ok if i speak in english (as he told me that he understood english but could not speak it) and he answer in french. Well that was it! He started screaming that I should go to the uk to speak english and carried on like that. I know of no TRT treatments here in france - it all seems so backward.
Now is the option of am 101 but wanted your thoughts as you took part earlier this year. The idea of injecitons in ears and all the travelling and stressed involved scares me to death but I will do it if it is worth it.
Please reply on this or personally to me if you prefer. Many many thanks for reading this..

 

[Jay M]

@attheedgeofscience
I would reply to you privately but can not.

I've read Steve's opinion on the subject.

I've made plenty of enemies but Churchill would also tell us to pick and choose our battles wisely.

I understand you're trying to help others by warning them about TRT. There's obviously more to the protocol than your short description. Serious question. Have you completed TRT by a qualified professional?

Here's what I'm trying to say about focus. Your fight against T with experimental treatment is inspiring and hopeful but debating TRT with Dr Nagler is not. We all come here to TT for info and support but don't like to waste time digging through bickering one post after another to get to the meat of the matter bc it's exhausting. As we get older time and energy management really becomes a factor too. I'm not defending them but it's a far more interesting read if you stayed on the informative side of things. That's the basis of your name "ATEOS" right? Many would agree and much rather invest time reading about your next documented fight against T and anything else you discover informative.

We never stop learning and the hardest part of adolescence is the first 40 years. Haha. You still got a few years to go.

Be well my friend.

 

[amandine]

@ attheedgeofscience
Please could you reply to me personally. I put a post cos i read that you had tried the am 101 trial earlier this year and am thinking of doing them but it is very far away and difficult.....but i would do anything to alleviate this pain of noise i am going thru.....please please can you tell me whether the am 101 had any effect at all?
Also do you or did you use any meds....
Hope you dont mind me asking?
I am not involved in any way with these back and forth attacks going on...
just someone reaching out for a bit of advice and help - my earlier post was for you but i dont think that i put your name before it.....thank you and hope to hear from you = i am not ateos or whatever - just amanda (amandine was a type sorry)

 

[Rhea]

Can someone explain to me then briefly, in layman's terms ,what TRT is exactly if it is not being provided with white noise generators and having some degree of "counselling" to improve your thoughts about tinnitus?..I thought that was TRT and that's what I had.

 

[Martin69]

The real reason for my return to TT is actually because I against all odds managed to get hold of a doctor associated with the AUT00063 clinical trial in the UK, and who would be willing to obtain a 30-day treatment sample of the clinical trial drug (ie. similar to the AM101 off-label treatment I was involved in earlier this year). It takes a bit of paperwork (and money!) - but it can be done. The off-clinical trial treatment can only be commenced once the last candidate of the clinical trial has completed the first week of his/her treatment (for legal reasons). Obviously, I would not want to miss the opportunity of sharing the experience with TT - hence the reason I have decided to make a "guest appearance".

Of course we are all very interested in this. But only in good news from AUT00063. ;-)

 

[Martin69]

Can someone explain to me then briefly, in layman's terms ,what TRT is exactly if it is not being provided with white noise generators and having some degree of "counselling" to improve your thoughts about tinnitus?..I thought that was TRT and that's what I had.

To my understanding (which could be wrong of course):
- Initial counselling (what is T, what not etc.)
- Audio tests
- Fitting with hearing aids or WNGs (with your audiologist)
- Regular one-to-one contacts (at least four) between patient and TRT specialist
The psychological part is very important so a good TRT specialist (best who has T himself) is important.
Goal is not to react to T and working towards habituation.
TRT can take between 18 and 24 months.