Tinnitus Retraining Therapy

I can certainly understand that. First of all there are no truly well-controlled studies demonstrating efficacy. The best we have are some studies with historical controls, which are just really never satisfying. And as far as truly blinded controlled studies go, well you sort of know when you are getting TRT! Finally, though, technology has been (ingeniously) developed that will allow for good blinded controlled study. The study is a multi-center effort under the auspices of Johns Hopkins University and the US Military. Moreover, the principle investigator's credentials and integrity are beyond question. So hopefully at some point in the not-too-distant future, your skepticism will be replaced by knowledge - either pro or con.

Well, the story that most give is that once a person has overcome tinnitus, the last thing he or she wants to do is hang around support boards. To be honest, that explanation - true though it may be - sort of leaves me cold. Earlier I did cite one fellow who reported his experiences on the web at http://tinnguy.tripod.com/index-1.html. Also, there are two individuals currently on this board who are very pleased with their results thus far. One is @Neil G - see https://www.tinnitustalk.com/threads/follow-up-on-techniques-protocol-you-used-to-re-habituate.8724/, and the other is @RCP1 earlier in Post #151 in this thread. But I totally agree with you that hard data are lacking at this point.

All the best -

stephen nagler

 

This was really nice to read. Thanks.

 

Make that three.

 

Interesting to note that in the LLLT thread Dr. Nagler considered this sort of evidence completely irrelevant. But when it comes to TRT it suddenly becomes worthy of consideration. Just saying.

 

All of this bickering gets us nowhere. I will write up my testament to TRT and make it available after I finish the treatment fully ..

As regards the scepticism of TRT. The problem is only a tiny minority actually try it with a recognised practisioner - A very small minority... Something which puzzles me in light of all the obvious widespread suffering which is going on.

Today I went to work. Commuted 3 hours in total. Did 8 hours work. Drove 20 Miles to meet a friend for dinner in a moderately busy restaurant. Played darts and drank some light beer for 2 hours in a bar afterwards and drove back just there now.

I will go to bed now and sleep solidly for 7 hours and get up and do it all again.

My family have me back and I feel like I have my life back.

3 months ago I was lying on my bed day in day out looking at the ceiling and wanting to disappear.

Luckily TRT came along and put me back on track.

By the way my T is the same as it was at the beginning - I heard it 90% of the time for the first 3 months. Now I hear it 5 - 10% of the time and it has no affect when I do.

Please excuse me if I don't lose any sleep over the fact that a double blind study has not been conducted on TRT yet. I don't care - Believe me I really don't care.

Sweet dreams.

I'll be in touch when I complete that testament after I finish TRT.

Until then

RCP1 OUT.

 

@RCP1

Thanks for your updates! It seems like a mixed bag reading the posts here. Was your tinnitus noise reactive? SoundCure aggravated my condition, so I was curious if WNGs would do the same?

I was able to "test drive" SoundCure before buying it and in the end, after about 2 months I returned it. I wonder if you could do the same with WNGs?

 

Oh and one final thing before I go. Lay off Nagler. He's a good man. You may not like his style. You may not appreciate his humour. You may think he has ulterior motives. However the truth is he is the salt of the earth. A man of great compassion. What other kind of individual would take so much abuse and still continue giving solid consistent advice day in day out to those who need guidance and hope. I for one raise a glass to him. He got me out of a hole and I will always be grateful for the steer he gave me. I couldn't give a dime what the rest of you think. Thanks @Dr. Nagler and in the words of one recently departed T sufferer: I hope you "Live Long and Prosper".

RCP1 OUT Take II

 

Let me clarify a bit my experience:

One, the folks I worked with at the clinic were very kind, and I have no doubt their genuine hope that patients find relief, which is, in my book, a good starting point. And I am very happy to hear that some folks here experienced relief with their TRT.

For me, I reflected on it a lot and really considered it, but ultimately found that learning about tinnitus, re-learning to do the things that I love to do (with some self-imposed limitations) really helped me get from my TRQ score of 58 (rounding up from my "actual" 48) to the 5-10 that I'm at right now. I really feel that I have reached the level of habituation that would be deemed a success in TRT every day for the last three months and it feels absolutely fantastic. I've achieved that through a combination of support from members here, work I have done personally with my psychotherapist, an increase of exercise/yoga, and "re-introducing" myself to the activities I temporarily ceased when I first had my onset.

I continue to come back to this message board though because a) I want to help new sufferers of tinnitus, b) I've made friends here that I enjoy talking to about T and other, more fun things (and actually has helped me a lot in the "support" side of things) and c) I am still personally invested in finding a medical cure, or medical treatment of some kind. Habituation is nice, but it doesn't turn me back to the time when I could listen to music without fighting with my T in the mix. And I've seen the amazing work that people like @attheedgeofscience have done to push toward medical intervention, and the behind-the-scenes work @Markku and @Steve have done to bring information from pharmaceutical companies developing actual drugs designed to treat Tinnitus, and of course the many, many folks on Team Trobalt. I am truly inspired by the truly GLOBAL movement that all of these things have taken.

That said, I must disagree with you @RCP1 about bickering--I think people have every right to question whether in 2015, TRT is the one and only way down the road with Tinnitus. It does bother me that it is based on a model developed in 1990 (which is what I was referring to in my "red flag" about the Neurophysical model developed by Dr. Jastreboff.) That was 25 years ago--and I'd like to think that we should demand more in our treatment for Tinnitus. In fact, the ATA itself does not list TRT as one of the "Treatment Options" on their own website but does, in fact, does list Mindfulness-Based Stress Reduction as offered by @Dr. Gans on this Board. (The website lists Sound Therapy combined with counseling--which is the basic program of TRT--but is something I was able to achieve without spending the money.)

Make no mistake, I would be much more willing to give TRT a try if it were at least covered by insurance, but it is not in the USA, in part because of the lack of Cochrane-level studies that have shown efficacy. Even for me, a fairly fortunate person with a job and supportive family, the cost of TRT is just more than I could pay. I do think that there are a lot of ways to get to the point that TRT can get you to, and many of them are much less costly.

 

I totally agree that we are all entitled to our own opinions, but why should bickering, sarcasm and in some cases hatred be allowed here on this board? Is there not a better way to deal with our differing opinions? This forum is filled with many intelligent individuals who truly care for one another's well being and progress, but I sometimes think all this bickering may hinder that process. I used to really enjoy coming to this forum and I still do to some degree, but it also saddens me that it can sometimes be so hostile. Some may say then why don't you ignore what is written? To be honest it's not that easy when all one may be doing is looking for advice. I hope that we can all get along for the sake of tinnitus at the very least.

 

I agree with you totally.

There is a line and it is too often crossed, I'd rather it wasn't. The situation most likely happens because when people believe very strongly in something they are prone to stepping over the mark. Defence becomes too vigorous and spills into argument. I'm guilty of it myself at times; if you try and explain something properly and somebody just doesn't address what you think are very valid points it can be frustrating, which can spill over.

I do say it often but it can't be said enough; the more you dwell in the negative the worse you will be. If you are arguing all the time that will have a direct effect on your health and the tinnitus, your brain will associate it more and more with the negative and reinforce that.

Having said this there is a place for disagreement. If we don't question and dig out evidence and see what the proof actually is then we're doing a disservice. We just need to try and control the overflow of emotion whilst the questioning happens.

 

Nagler has it totally right with the observation that people confidently moving forward probably won't post at places like this much. We probably miss a lot of success stories for just this reason. if I got better I know I'd stop, simply because there wouldn't be a lot of point, unless I'd somehow found the holy grail of T & H therapy and wanted to make it known to everyone.

 

Let me explain. If a person - in this case @Dr. Nagler - runs a clinic where 18% of his patients are treated free-of-charge and where all (remaining) profits are donated to charity then why would he not accept the suggestion of taking on someone from TinnitusTalk as a TRT-patient of his (for free)? Why doesn't he just say: "Sure, great idea"? It would benefit everyone (and himself, too). If you had a great product to offer, wouldn't you want everyone to know about it? Good for business, right?

@Dr. Charlie offered four free trials of his ART videos without hesitation. On the spot. No questions asked. With Dr. Nagler, there always seems to be some excuse as to why a given rule/concept/request should not apply to him (when he is asked for something). Dr. Nagler is like that friend-of-yours who always says: "Call me whenever you need my help" and yet oddly enough, whenever you do call, the person is "strangely" enough always busy, away for the weekend, shopping, or engaged in "other activities".

Here is another "thing" I have observed over the past year: I have never seen Dr. Nagler take an interest in anything except TRT. Even when presented with interesting evidence of treatments that could work, Dr. Nagler is always quick to dismiss any result as "placebo". Recently, I caught him making a flat out false statement (the kind that would probably get you kicked off the board if TinnitusTalk had been an institution of academia):

www.tinnitustalk.com/threads/low-level-laser-therapy-lllt-for-tinnitus-%E2%80%94-efficacy-debate.7650/page-18#post-97400

And that's actually the 2nd time. Here's the first:

So "forgive me", but whenever I see people make misleading statements, I tend to become more wary of what they say in the future. Integrity, honesty, and sincerity are personality traits that matter to me. Perhaps you see things differently.

attheedgeofscience
25/MAR/2015.

 

Although I take on board the thing about 'bickering', I do feel I need to briefly express my support to ATEOS on this important point. I am not what you could call an LLLT believer (I tried home treatment for a few brief weeks without success). But I got very drawn into the thread that ATEOS refers to because I saw how destructive and lacking in integrity Dr. Nagler's involvement in that thread was (and because this offended my academic instincts). He engaged in repeated misrepresentation to the extent that for a while pretty much anything he wrote in that thread could be shown to be either false or incoherent with other things he said. It became kind of funny, until it culminated in the example in ATEOS's link above. I encourage anybody who cares about what happens at TT to look at this and to think carefully about what it means. The contributions of Stephen Nagler may help some people here, but he is far from being 'salt of the earth'.

 

@ATEOS, on the contrary I am all about honesty and sincerity etc. I guess this is why I put my two cents in. In fact I love reading your posts as you have a wealth of information and I have a lot of respect for what you say and what you are trying to do here on TT. I guess I also have respect for some of Dr Naglers contributions, this is why I get upset about this type of confrontation. I really do like you both and I hope that one day soon there will be an effective treatment for all of us....

 

I don't get it, ENTs and audiologists recommend that we minimize or completely stop the use of headphones/earbuds to listen to music, yet TRT suggests that one should listen to that awful white noise continuously and without giving it a second thought.
Doesn't listening to that noise for 18+ months actually/potentially cause more hearing damage?

 

Yes trt causes more damage and more problems.
Simply stay away.
In general has been scientific proved that sound therapies does not have results
and some of them can do only worsening.

 

Do you have anything to back up this extreme statement, or is it just your own unsubstantiated opinion?

cool, can I see the research?

Do you have an answer for the numerous, numerous, large-sample-size longitudinal studies over the years which have shown that these therapies can be effective for a percentage of tinnitus patients?
http://www.ncbi.nlm.nih.gov/pubmed/25756459
http://www.ncbi.nlm.nih.gov/pubmed/25417546
http://www.ncbi.nlm.nih.gov/pubmed/25413891
http://www.ncbi.nlm.nih.gov/pubmed/25319676

There are a large number of studies which show that TRT is, at least, somewhat effective for some percentage of tinnitus patients. No one has suggested this is a magic bullet. However, I've literally never seen any research proving or even speculating that TRT is "damaging" or dangerous in any way, and I think that's a pretty bizarre statement.

Many people who use earbuds or headphones, do so at unreasonable volume levels, and cause hearing damage. I don't think ENTs in general like things that cause hearing damage, but I assure you that there's no general prohibition on headphone use for people with T -- just keep the volume reasonable!

No, because it's played at a pretty quiet volume, probably only 40db at the high end and then turned down as the therapy goes on. You can listen to 40db white noise 24/7/365, it's not going to hurt you, it's orders of magnitude quieter than noise that can cause hearing loss.

 

Please see dirk de ridder slides it says inside the trials which say that sound treatment does not work.
Of course in all trials placebo works generally about 20%.
There are also biased trials but generally with TRT you loosing your time
if you mean cure the habituation no this is no cure cure is to stop the T not to habituate it.
Habituation happen with every time normal sounds TRT is not necessary.
TRT will stop tinnitus in less than placebo cases.
In cases of H TRT for sure will do more damage.
TRT is a money business but not cure.

 

Right, and I just gave you five examples of studies, several of which show signficant advantage over placebo even if I give you your 20% on faith...

Confirmation bias is a factor in every analysis of every problem ever, and yet we still learn things.

I think different people probably have different kinds of tinnitus; in my case volume is at least partially a function of attention, so habituation and "quieter" are at least somewhat the same thing.

Okay, so this is, once again, what I'm really taking issue with. The claim that it's a "money business" as a way to dismiss research is getting into conspiratorial tones, because a lot of the research has been done in academic settings. The for-profit edge of it as far as providers go, isn't nearly as lucrative as pharmaceuticals, imaging devices, and a lot of other aspects of medical culture.

I'm totally open to the possibility that someone has done a study somewhere and concluded that TRT caused long-term problems for some subset of T patients, but if that work has been done, I can't find it, and everything I've come across in the search has come to the opposite conclusion. So, I am trying to understand why you feel so strongly about this, and what information you have that I don't. I am sorry if I have come across as combative; sometimes it is hard for me to express myself without being verbose. I'm legitimately interested in your point of view, and I'm not trying to badger you (not too much, anyway )

 

@linearb I agree that quieter and habituation are at least somewhat the same thing. In my case volume is a big factor. Have you done TRT? Do you have H?

 

I have not done TRT. I do a halfass version of the audio protocol for short periods when this is really bad, though.

I don't have any meaningful amount of H to complain about. I have experienced it distinctly enough during severe episodes of panic/T, to have some grasp on what it would be like for me if it were worse, but thankfully it is not.

 

@linearb What is your halfass version of the audio profile like? What are short periods for you? Have you run across any literature that shows that TRT makes H worse? Yes, thankfully your H is not bad. Mine was not bad until after about a year of T. Then out of desperation, I tried Neuromonics, and it made my H severe. Quieter and habituation are the same thing for me. Volume matters.

 

I use either cricket noises or pink noise, sometimes mixed with ACRN from generalfuzz.net. I can run all that on my phone, and I often use bone conduction headphones that put the sound right into my head with the T, and leave my ears open to hear the world.

I tend to do this when my brain gets stuck in a mode where it thinks all it wants to do is monitor the tinnitus signal. Cricket noises and things that mix cleanly through the T frequencies (12-14khz for me, so I need audio that spans ~11-16khz) make it very hard to stay focused on the T signal even if I try. I think the most I've ever needed to do it is 2-6 hours a day for 10-12 days, but I've used it for shorter periods more frequently.

I've had T for a long time, my entire adult life at least.

 

@linearb Thanks for the information. What is the cause of your T?

 

I would personally not even want to listen to white noise for 10 seconds, let alone 24/7/365.
Also how does that 40db figure fit the tinnitus profile of someone who has >>> 40db T. Probably wouldn't even hear the bloody white noise. TRT is so much lacking any reasonable basis that I'm just at a loss at why would anyone go through with it... 18 months TRT for habituation? Seriously? After 18 months you'd pretty much be habituated at some degree anyway.
I'm not saying that it lacks 'scientific' merit, I suppose that Jastrerboff and Vernon have covered that, I'm saying it lacks reasonable basis. Putting more noise on top of existing noise is plain idiotic, nothing more than that.
And ole' Jesterboff and Vernon have done a gigantic disservice to any poor soul with tinnitus by putting a potential stop sign to any meaningful medicinal attempt at actually finding a cure instead of people coming with all sorts of medieval approaches such as neuromonics, music therapy and any other contraption that promises to facilitate habituation.

 

@undecided I had a terrible time putting more noise on top of existing noise. It just made it worse. Out of desperation I tried Neuromonics, which gave me high-pitched screeching in both ears and severe Hyperacusis.

I had not thought about the disservice done by such approaches, instead of finding something medicinally meaningful. Good point. I KNOW that Neuromonics, Inc. is just in it for the bottom line--money. When I started having such adverse reactions from Neuromonics, I called the CEO of the company. He shouted me down at every turn, refusing to answer my questions. Basically saying he didn't care that I was have adverse effects. Medieval approaches, indeed! Does anyone know where Paul Davis is now, with his "proprietary information?" I couldn't even find out what they were pumping into my ears. How Neuromonics got to be FDA-cleared is beyond me.

 

Well, then it's a good thing that you don't have to, because no one is suggesting that TRT is right for everyone, or even beneficial to everyone.

This is a real problem; from what I've read, "real" volume of T is almost never that loud, but if you have ~20DB T on top of 40db hearing loss, then it can certainly be more or less the same thing as 50-60db T, from a masking perspective. I have had TRT clinicians tell me that it can be difficult to use masking-based therapies effectively for people with significant hearing loss.

Er, TRT is by far the most researched of any tinnitus treatment, and study after study has found that it's at least somewhat beneficial to some people. That's a lot more than can be said of something idiotic like homeopathy, and yet people but homeopathic snake oil all the time. I'm not really even at a loss as to why they would do so, but I'm certainly not at a loss as to why people would try TRT... especially when we've had a lot of posts right here at TinnitusTalk from people who say they were helped by TRT!

Okay, so you're calling dozens of studies over 20-30 years "unreasonable". Got it. What is your pile of evidence for your own "reasonable" beliefs?

I'd say the proof is in the pudding? As in, it may be idiotic to you, but on the other hand we have the large number of people who report being helped by TRT...

Oh come on now, this is just paranoid. What are the "meaningful medical attempts" to cure tinnitus which have been aborted because of some old research, and explain to me exactly how they have put a "stop sign" down to anything. I am reminded of similar arguments that pharmaceutical companies are all in secret collusion, conspiring to hide the cures from cancer to keep selling cancer drugs. Conspiracies can be easier to accept than the unpleasant fact that hard problems are hard and that human bodies are frail.

 

neuromonics has helped some people

do you really think if they only hurt people they would be in business?? you are an exception... your tinnitus would be worse with any sound therapy... its not neurominoc's fault...

 

That is something I agree with. A recent little behind-the-scenes-story I can share with this board.

As members of this forum may - or may not - know, I was behind the initiative of setting up a Q&A-session with Auris Medical (a unique opportunity - and the first public Q&A-session ever held with any of the emerging otology-pharmas, as far as I know):

www.tinnitustalk.com/threads/auris-medical-q-a.8201

I don't remember the exact statistics, but the member base of TinnitusTalk is overwhelmingly US American (something like 75% of the active or total user base - don't remember which). For that reason, I sent a mail to two key people of the ATA informing them of the then on-going Q&A-session with Auris Medical which was tweeted by TinnitusTalk (see https://twitter.com/tinnitustalk) - the idea being that the ATA could then re-tweet that to their own members (again - a unique opportunity and also quite relevant given that the clinical trials of AM-101 are very much taking place in the US). I never received a reply to my mails, and the information was never tweeted to the ATA's own members (see https://twitter.com/ata_1971).

I could also share a story about Team Trobalt's attempt to get help from the ATA in relation to our informal Trobalt trial, but I'd rather not.

attheedgeofscience
26/MAR/2015.

 

Paranoid my butt.
Take a look at what sort of 'research' is behind the funding requested for the purpose of finding a cure for tinnitus.
http://www.ata.org/about-ata/past-ata-funded-research
Seriously, from a quick look through the list, there is pretty much NO medicinal approach except from Acamprosate.
There is some research in there that might be beneficial for diagnostic purposes but as far as treatments are concerned... not much is going on.

And there are some truly hilarious funds such as:

Music to Treat Tinnitus (3 Year Grant)
Richard S. Tyler, Ph.D., University of Iowa, Iowa City, IA
n/a $102,580

I mean, a hundred grand for friggin music. It'd be funny if it wasn't such a complete waste.

Be reminded that ATA is/has been directly influenced by people such as Jastreboff, Vernon, Nagler etc.