Tinnitus Retraining Therapy

Excellent. So when you succeed - instead of holding your hand, I'll shake your hand!

Sounds like a plan.

Now go get better.

 

No way to tell for sure but as Dr. N stated I wasn't willing to wait to prove an experiment.

I had a good experience and it opened a door that I walked through.

@preslys I wish you the very best in your HIFU treatment.

Take care all.

R

 

Would it be possible for you to pinpoint just what the TRT-clinician did that you believe made your T worse? If a poor executer of this therapy method might cause harm, it could be good for other potential clients to know what they should look out for.

 

Problem is ... we don't even know if the clinician knew anything about TRT at all! That's what is so bad about the lack of credentialing and standardization in TRT. Any licensed healthcare provider can call himself or herself a TRT clinician. No need to even know the first thing about the neurophysiological model. Hell, you don't even need to know how to interpret an audiogram!

 

Do you have any theory about what the self prescribed TRT-clinician did that could possibly have made @preslys T worse? If TRT correctly carried out is safe, how is TRT incorrectly carried out unsafe? @preslys isn't the only TT-member who sought out TRT but got the opposite from what he paid for, so I figure it cant be a bad thing to know what to look out for. Assuming it actually was the botched TRT-attempt that aggravated T, that is.

 

@Dr. Nagler
I seriously wonder how and why botched TRT can aggravate Tinnitus permanently?

 

rcp1, Did you do TRT therapy?

 

No, Vincent. I really don't.

I suspect it would have to do with some aspect of the sound therapy component of the protocol. Maybe inappropriate devices, inappropriate settings, inappropriate instructions, an error in categorization, stochastic resonance, failure to recognize six-week syndrome, the list goes on and on.

But since we're on the subject, I'll tell you this. I have taken a lot of shit on this board for recommending only a handful a handful of individuals when I am asked for suggestions regarding whom to see for TRT. But the fact of the matter is I am simply unwilling to give out a name unless it is somebody I can personally vouch for - because there's a lot of stuff that can go wrong. Please understand this, however. Even when TRT is not correctly applied, it is extremely rare that the patient's tinnitus will actually get worse. More often the patient will just not succeed and consequently blame it on TRT instead of blaming it on the fact that he or she was mislead by an inexperienced (or sometimes unethical) clinician. But one way or another, when something goes wrong with TRT (if it even is TRT), you can bet somebody on a message board will post about it.

 

Yes. He did TRT with Jacqui Sheldrake in London - one of the very best TRT clinicians anywhere.

 

Wonderful!!

 

Well, I sure think so. And you can bet so does @RCP1!

Let me point you to a nice story about Jacqui Sheldrake ... and about Gail Brenner, the lady you yourself will be meeting at the end of this month.

As you may recall, three or four months ago I went through a rough patch with my own tinnitus, which had been stable for some twenty years. Actually, calling it a rough patch was putting it mildly. I felt like the entire floor had given way. If you read the story regarding what happened [Click Here], you will see just the kind of genuinely caring people Jacqui and Gail are!

Hey, here's a photo taken at Niagara Falls in 2011. Left to right are Myriam Westcott (terrific audiologist from Melbourne, Australia), Gail Brenner, moi, Jacqui Sheldrake, and Jacqui's husband Tony. We were all attending a tinnitus conference in nearby Grand Island - and we took a break to visit the Falls!

 

I had a look at professor Pawel J. Jastreboffs homepage:

Recently, it has became a significant problem, to patients and to us, that some people claim to offer TRT without possessing sufficient knowledge of the method. TRT seems to be easy, but in reality it is complex, and it requires specific understanding, knowledge, and instruction. We see patients who believe they were offered TRT, but were disappointment with the treatment outcome. While talking with them it became readily apparent that either they received improper counselling, or improper instruction on how to use sound generators in their particular subtype of tinnitus. Others were simply given devices without any counseling at all!
​

Jastreboff specificly talks about the sound generators, but he doesn't explain how the treatment outcome disappointed clients who had poor instructions or no instructions at all.

On the homepage of California Tinnitus Center, it says:

If used incorrectly, the sound generators can actually worsen your condition. Much of the counseling involves teaching you how to use the sound generators correctly and effectively.
​

The sound generators again. But no explanation of what "used incorrectly" might mean. I can only think of one way to make T morse, and that's a too high noise level delievered too close to the ear. But Jastreboff is very specific that in TRT you only do partial masking with low level noise:

TRT always consists of two components: intensive one-on-one directive counseling, and sound therapy, most frequently with the use of sound generators (which emit low level of broad-band noise), following a specific habituation protocol. Tinnitus should never be masked in TRT, because one can never habituate signal one cannot detect.​

It doesn't seem to me that you TRT-guys are reckless in this regard. But maybe that's what selfprescribed TRT-clinicians been doing wrong, and maybe that's what potential clients should look out for?

My personal opinion is, that with a condition like T you can't expect any guarantees. An adult person who invest in a treatment will simply have to take own responsebility for the financial consequences. What caught my attention in this case is people not only left without improvement but actually believing that TRT aggravated their condition. I felt it could be worth some further analyze.

 

Thanks so much for adding a personal touch to the topic. Cant wait to meet Gail Brenner and get started.
Having such a screaming day, I hesitate to read about your set back until I am in a better place.

 

... which is why I offered the six bulleted questions toward the end of my Thoughts on TRT post. It's not foolproof, but at least it's a start.

Leah, everything about tinnitus is personal to me. And it really doesn't matter whose tinnitus we're talking about!

Now it's time for you to set all this "stuff" aside ... and go get better!

 

Perhaps those with reactive T or H get worse with the gens. I know 2 personally (and more if I think about I am sure) this happened too..Not everyone can handle TRT sound component or"gens"

 

I could not disagree with you more, Lynn. With the exception of one patient back in 1998 (where it was due to my own screw-up), I have never encountered a single TRT patient who could not "handle" the sound component. The problem does not lie with the patient. The problem does not lie with the tinnitus ("reactive" or not). The problem does not lie with the hyperacusis. The problem does not lie with the protocol. The problem lies with the clinician.

 

Well these clinicans are highly regarded Dr. Nagler...so I don't know what to say..Are you suggesting that every single person can handle the gens? Cause after thinking about it more, I thought of two more people plus people here at TT. Are all these clinicians crap?

It is the single biggest reason I have not done TRT. I am afraid to get worse.

 

Depends on by whom! Are you saying that they are highly regarded in TRT circles? Or just in general?

In my experience, yes.

I do not know who those clinicians are - so I cannot say one way or the other. But "crap" is pretty harsh. I do not wish to be critical in any way, Lynn, but if a patient of mine couched various comments in black and white terms like that, I'd want to explore whether or not at least part of his or her problem might be all-or-nothing thinking. And I might consider adding some elements of CBT to my therapeutic approach.

Yea, I get that. I fully admit that I had it much much easier back in 1994-5. First of all, there was only one guy for TRT. And I knew he was good - since he was the fellow who came up with TRT in the first place. Second, there were no tinnitus boards to cast doubt and scare the crap out of me. (The term does have its charm, no? )

But all that aside, if you are looking for absolute guarantees, in tinnitus you have most definitely chosen the wrong affliction! Because in the final analysis, the only predictable thing about tinnitus ... is its unpredictability.

None of this is easy, Lynn. And if my comments seem somewhat direct, please know that they comes from a place of caring.

 

Dr Nagler...apparently they are highly regarded..but I guess not lol
I am all or nothing and working on it My counselor says it can be a good thing at times but I think he is just being nice lol

Yes after almost 2 years I am still on the fence regarding TRT but it sure sounds nice.

Just not sure it's for me...I keep getting worse and it scares me.

I am direct myself so it's all good..My language is just how I speak..I'm a small town girl from Canada..I hold back, believe me...sorry if my usage of "crap" offended you but you're not the "crappy" clinician so what does it matter anyways..

I defended you earlier today because I was in a good mood and lately you have really been going out of your way to help others and I truly respect that...just so you know I wasnt on the attack TRT fence with my earlier comment..it's just what I have observed.

Cheers.

 

Yea. I guess not. But there is no "lol" about it! It's a damned shame. That's what it is.

Seems the old fart got that one right, huh? Maybe I'm not such a slouch after all!

Lynn, TRT is a "want to" - not a "have to." There's no gun to your head!

I can understand that.

Either way, you did not offend me in the least. Look, this board has of late been the proving ground for offense. If anything, you have been an absolute angel - "crap" and all!

TRT deserves a lot of criticism. But there is a lot to recommend TRT as well. I try to tell it like it is - the good and the bad.

Back at ya!

 

You're no slouch. I laughed when I read that part.

 

New to this website.
I haven't gone to Wash Univ yet, but I may.
I am not sure how easy it is going to be since my year long tinnitus is so variable. Rarely do I hear classic ringing that I have read about. Whistles are fairly common. The worst sound for me is the insect sound--constantly going about. Volume is quite variable, but I used to have quiet days. Not recently. I use moderate music to calm myself down. I don't play the music real loud. It get rid of part of the tinnitus. I realize loud music can cause it or make it worse. But I don't how loud it can be for this to happen. But I have always been sensitive to really loud music. Never liked loud concert or dance halls even before I got t.

Here is a link to the Washington University webpage that talks about retraining. Has anybody been there ? Or, in general, the value of retraining.
http://wuphysicians.wustl.edu/page.aspx?pageID=600

 

I don't post often anymore as I am going through TRT myself and staying off the internet boards is part of therapy, (not devoting any extra time to T,) but I am not always the perfect patient. I do keep an eye on things on the site because I really think it is great site and has really helped me in times of need. I recently saw a very negative post about TRT with Dr. Nagler, so I wanted to post my own experience. I have been doing TRT with Dr. Nagler since Nov. 2014 and yes I found him on this site. So thanks Tinnitus Talk for that. Of course I checked him out first, I went to his website and read his testimony on his own tinnitus and that is what really sold me. After reading that I knew I had to meet this guy. I really never found any real help or hope until I met Dr. Nagler. I think that is why I felt so hopeless at times because I had all of advantages of being a physician and still could not do or find anything to help with this noise in my head. I met with all sorts of doctors ENT, neurologist, etc, all of which could really offer me nothing of any substance. Very Very distressing to say the least. OK, so thats little bit of my story.
I emailed Dr. Nagler about TRT after looking at his website. He emailed back and we began a email discussion that then led to a phone call. This was all free. We then set up a time to meet in Atlanta for a 2 day appointment for the initial TRT consult. I also faxed him my medical records concerning my T workup this far so he could review. I live in Oklahoma so I flew down there, and I must saw I was very nervous about the plane and airports because of my hyperacusis, I think I had a bottle of klonopin in each hand, lol, but I made it down to Atlanta. His offices are very nice nice and the audiologist he uses is in the same office building, also ENT's in that office building. The first day was mainly assessing my tinnitus, going over my history, etc. His office staff was friendly and courteous, I also met with an audiologist in his office that day under his direction. From what I remember the second day was the mainly the counseling part of the TRT which consisted of him going through explanations of tinnitus and how the TRT can help me get from Tinnitus that bothers me to Tinnitus that doesn't bother me. I was wearing some hearing aids with masking devices, but I decided to purchase a set of General Hearing Instruments Pink Noise generators for my TRT. They have become my best friend, and I have worn them about 16 hours per day since November. I also use a brookstone, noise generator at night with white noise. So I have been pumping noise into my head 24/7 for the last 8 months. The best thing about Dr. Nagler is is own experience with Tinnitus. He has been there, he nows what you are thinking, he knows how much you are suffering, because he has been there himself. I think one of the most valuable things I got out of my two day visit with him was HOPE. He was the first physician I had met with that gave me any kind of hope. "You can go days without water, weeks with out food, but you won't make it very long without some sort of HOPE" got that from Rick Warren by the way but it is so true. Also my wife was present for all my visits with him, this really helped her understand what I was going through and he gave her advice as well. Atlanta is a beautiful place and we also did some sightseeing while there.
Ok, so how much does it cost? I will be honest physicians sometimes give each other a professional courtesy discount of 10 percent which is what I received. Even without the 10 percent discount my total cost to date is less than 800 dollars. Since November 2014 I have paid less than 800 dollars for his services. This includes my two day consult in Atlanta, plus several phone consults since then. I live in OK so for my follow up TRT sessions we do phone consults. These have been about every 3 to 4 months, recently had some flareup of T because of some medications changes I made and I had to contact him for what I called an emergency TRT visit and he helped me get back on track, so he is available throughout your TRT. The cost of your devices are not included in his services and you can get those from many different places and probably prices, I initially was going to use my hearing aids but they really didn't follow the protocol very well so I went with General Hearing Instruments, I went with the pink noise generators because I felt it was easier for me to tolerate with my hyperacusis. The devices were about 1500 dollars, looking back after using them for 8months they are priceless to me. You can probably get cheaper devices and also more expensive devices, but I love mine. I often say they are one of my best friends, lol, as my Tinnitus is so much easier to tolerate with them in.
Ok so how am I doing, at 8 months, I still have T and it is just as loud as the day I started, but it bothers me much less, It does not control me anymore, it does not cause me panic, for the most part it does not affect the things that I do, some days I do experience habituation, meaning my T just really doesn't cause me any conscience anxiety, other days it bothers me, I still have my bad days too, I just keep pumping the sound into my brain day after day though. But overall I am in a much better place. The devices really help hyperacusis, perhaps faster than they help the T, my sound tolerance went up within several weeks to months. I am able to tolerate most restaurants now, I even go to the movies every now and then. This is something I could not have done previously and I used to have to leave restaurants all the time because they were so loud with so many noises. I would never have considered going to the movies before.
In summary, guys and gals, Dr Nagler is the real deal. He has been doing this for many years, and you want a physician with experience. You also want somebody with experience helping the more difficult tinnitus cases and that what he does for a living, and most of all he was once a tinnitus case himself.
This post is really for information about my experience. I do not want to get involved in a discussion on this, as it would cause me to devote more time to my T which is counterproductive to my TRT. Once I am habituated I do plan on trying to help others as much as possible and being more active on the site. I hope one day to post my success story on here, but I am not there yet, I am hopefull that I will eventually get there though! Good luck to us all!

 

I've just joined, but have been dealing with Tinnitus for the last 5 years (this coming October). Anyways, not sure if it'll help, but I use an app on my iPhone called Sleep Machine and the headphones I use are the Apple earbuds (see the specific model here http://www.apple.com/ca/shop/product/MD827/apple-earpods-with-remote-and-mic?fnode=79. Now, they don't completely enclose the ear and that may be part of this issue you are challenged with (coverage of the ear in totality). The only time I use them is when I sleep. They aren't that great for music, but they work for sleeping. I bought several pairs of eBay earlier this year, just in case they discontinue making them. Anyways, apologies for reviving an old thread, but I thought I could add some info. Take care.

 

Hello,


I wanted to and was asked to contribute my experience from going through TRT twice over the course of a year. I have been removed from the experience for about a year, so I will try and just talk about my experience and the facts and just keep some of the emotions out of it.


Background


I have had tinnitus for most of my life, and have had it for some degree since I was about 15 (I’m 27 now). It didn’t get worse until in the summer of 2014 when I was exposed to multiple gun shots without the right hearing protection. From that experience, I gained an increase in my reactive tinnitus and acquired moderate hyperacusis.


Treatment


I had to take a year off of school after the gun shot incident, due to my T and H and tried to seek treatment. Luckily, I was able to get into the Tinnitus Clinic at St Pauls hospital (Vancouver, British Columbia, Canada) to see Glynnis Tidball. She helped me work on managing my emotions, my T and my H and how to employ sound enriching and stress lowing practices. She is also just a wonderful human being all together!


TRT (First Experience)


Through Glynnis’s recommendations, I went and saw an audiologist in Vancouver (and really, the only game in town) who was going to help set up and get me going on the sound portion of TRT. To put it lightly, the audiologist and I didn’t get along very well. I was still very emotional at that time, and she was hesitant and in some cases refusing to answer some of my questions, instead saying that they would be dealt with through the counseling part of TRT with Glynnis.


Because of this experience I decided to take back the devices during the 30 day trial period. To say that this was a blow to my confidence of getting better would be a totally understatement, but I tried to just carry on as best I could.


TRT (Second Experience)


After this very upsetting experience, I found out that there was another audiologist on Vancouver Island (A two hour ferry ride and drive to get out there) who also administers TRT. I went and saw her and it was a much more positive experience! I made a couple trips out there (consultation, fitting and getting the devices) and they were much more comfortable – both by fit and the sound that they administered (I got to actually pick which types of sound that I wanted to use).


With these devices I found that I was able to get some sort of relief and was starting to finally get the edge on my T and H a bit. I had the devices for a 3 month trial period, which was a much better time frame for me to actually be able to get a feel for the devices.


Around this time I was starting a job working as a park patroller in Kelowna (Summer lake town) and was spending many hours in hot weather and was quite sweaty and greasy (gotta have the sun tan lotion!) from walking so much for my job. So it should be noted that this probably wasn’t the best environment for them compared to if I worked in like an office building or something.


After about a month of having the devices, I started to notice that my ears were getting more reactive, and would spike when around things such as water and other noises. As you can imagine, I was quite concerned. I brought these concerns to the audiologist and she did a very good job addressing them, even scanning portions of the TRT texts and sending them to me as a resource – which I GREATLY appreciated. Long story short, its very common for people to experience this in TRT and it usually settles after more use of the devices.


Unfortunely, as the 3 months we’re approaching, my ears were still quite being quite reactive, especially to water sounds. I was also having issues with the fit of one of the ear buds due to my ear canal being very narrow and straight (Again the audiologist was great, actually shipping me new buds to try and hopefully fix the problem). At the end of the day, I think my work environment just made it hard to get the best fit.


So at the end of the 3 months, I returned the devices. That’s to say without a lack of trying on my part, or the audiologist’s part!


Summary


My experience with TRT is a bit of a mixed bag – but I would still recommend it to anyone who has T, H or both. With the audio part of TRT, I had a much more pleasant experience with the second audiologist. If I were to have issues with my T, or if my H came back worse then it is now then I would back and see her.


With the counseling part of TRT, it was literally a lifesaver. Over the course of a year and a half I went from almost a suicidal state, to one where I was able to live a mostly normal life excluding some nosier activities (Movies, concerts or clubs…which I really didn’t go to before this happened) and just protect my ears when it was necessary. I can now see why it’s stated that in many cases the counseling part of TRT can be more important then the audio portion.


In my case it came down to a couple of factors: The reactiveness of my tinnitus, the cost of the devices ($3,000) and the fit of them. Since I was still having issues with the fit, I decided to return the devices and try again at a later date.


Where I am now


Currently I have returned back to school and am trying to work towards getting my career going. My T is still pretty moderate and does fluctuate. But through trying to maintain a level emotional state, sound enrichment (sound machine playing 24/7 at home) and trying to have a healthy life style I have noticed a reduction in my H. I could also attribute this to the management of my TMJ issues, which still cause me some issues sometimes as I can clench my teeth when I sleep sometimes or from stress.


As of right now I don’t really have a need for TRT (and hope not to in the future), but if I do then I would return to that second audiologist and give it a try with her again.


Thank you Tinnitus Talk ( and @Markku ) for all the great work that you do, and I hope that this helps anyone who is thinking about giving TRT a go and is just weighing the options. If anyone has any questions, then feel free to shoot me a message and I’ll try to help out in anyway that I can. I’m not on here too much anymore, so it may take me a bit to reply but I was surly do so!


Cheers,


Kris

 

Prednisone was the only thing that seemed to relieve my tinnitus. But I couldn't stay on it and I really didn't want to either! I tried TRT and it helped, but my doctor in Vancouver also told me (in a manner of words) to save my money. He's a great, older doctor and doesn't beat around the bush. He said antidepressants generally have the same effects on a persons perception of tinnitus as does any habituation therapy. Habituation therapy such as TRT is expensive and there are no guarantees. And I wouldn't recommend antidepressants for dealing with your tinnitus (unless there are some psychological issues going on) He did however recommend dealing with stress, hypersensitivity and therapy which looked more at exposure and mindfulness/awareness. In a nutshell, dealing more with your relationship with tinnitus rather than just trying to get rid of your tinnitus which you might be trying to do for the rest of your life! Anyway, I took his advice and after some digging around found some very helpful courses and modalities which has since helped me more that any drug or TRT therapy.

BTW if anyone is interested in the exposure, awareness and acceptance courses I took to help change my relationship with tinnitus I can point you in that direction.

 

Point away

 

@Robert Richards please point me in the right direction

 

Glad to see you're doing better Kris!!

 

Thanks Claire! It took patience, time, determination and some luck and so far I've been able to go back to school and resume a somewhat more normal life now