Tinnitus Retraining Therapy

I personally did not find TRT helpful for tinnitus. However, I find some of the recent attacks on Michael Leigh unpleasant and in some cases ageist. Michael had Tinnitus Retraining Therapy twice and in both cases found it helpful for him and he is entitled to express that viewpoint.

It is perhaps worth pointing out that Michael received TRT from the NHS in the UK and therefore did not have to pay for it (nowadays the situation has changed and TRT isn't normally available on the NHS). I've spoken before about the importance of expectations and the fact that if you get something for free and you find it moderately helpful your satisfaction level is likely to be far higher than if you had to pay a lot of money for a treatment and find it only slightly helpful.

My own point of view is that at the moment we have no really effective treatments for tinnitus and developing them is where we need to devote our attention.

 

Thank you for your input @david c I like to read your posts as you always have something interesting to say. Thank you also for your understanding and sensitivity regarding ageism. Yes, I am 60 but I can hold my own against any 40 year old I am pleased to say - taking off 3 1/2 stone has helped immensely and feel much better for it at 14.7. The comments I regularly get from women when they know my real age is quite flattering to say the least, especially when they don't see a grey hair on my head: with a little help from hair colorant I hasten to add...lol Comments from those that ridicule my age are water off a duck's back.

There is a saying: New broom sweeps clean old broom knows the corners. Don't worry, if we live long enough we all get old.

TRT the full treatment is still practiced at my NHS hospital. However, you are right that it is not so easily available as it once was. I receive a lot of correspondence from people in the UK with tinnitus. When a person has tinnitus due to noise exposure ( Noise induced Tinnitus) They are referred to Audiology. Here they see either a Hearing Therapist or Audiologist that specialises in Tinnitus and Hyperacusis management and treatment. This can include TRT where available. It might not be the full treatment but elements of it. CBT is also available from what I've been told. Counselling, and sound therapy using white noise generators and Hearing aids. All this treatment is completely free as point of delivery. Just two weeks ago I was issued with two brand new White noise generators which cost over £2500.

In most cases a person that is having difficulty coping and managing tinnitus in the UK, is referred to Audiology when there is no underlying medical condition causing the tinnitus, that an ENT would be able to treat. The patient isn't just left alone or told nothing can be done. Some form of help is provided which is better than nothing.

Take care
Michael

 

If I may add just as a general point of one who has read these arguments again and again, right now there is no practical treatment for tinnitus. Hopefully Lenire is the first generation of what will be both pharmaceutical and bimodal interventions to make our lives better in the near future.

This means be it TRT or CBT or masking if you can't cope these are the only shows in town aside from having a long term relationship with benzos. This is clearly a suboptimal situation. That being said I in no way begrudge someone to use or suggest to someone suffering to use TRT or CBT to help habituate. Any port in a storm.

There is an issue if the behavioral modification/habituation tools suck all the research money out of an actual cure for the perception of tinnitus itself. Maybe I have missed it but no one on this board is arguing that more money shouldn't be put into actual tinnitus research. No one is arguing that the world wouldn't be better with a shot or a shock that could make us right again. In the mean time if you can't bare it I don't know why you wouldn't give a TRT or CBT a try to at least make the best out of a shit situation.

Now I'm sure that guy whose whole career and claim to fame is TRT would like us all to believe that his is the final answer and shower him in grants and fame, but he isn't on this board. No need to be angry with the folks that are here.

OK now flail me till I squeal.

 

Forgive me if I am speaking for others, but I believe no one is angry at the existence of TRT but rather the intense victim blaming and gaslighting that seems to go hand in hand with it (and clearly doesn't have to and shouldn't) which people here are actually encouraging.

I personally feel like the effectiveness of TRT is also oversold since a recent study in JAMA found it no better than placebo. In that sense, it is true that it would only work with positive thinking (like any other placebo) but what seems abhorrent is the attack of character on people (and there are many) this doesn't work for.

The anger is also at statements like "tinnitus is not a problem, it's just your reaction to it" is also *very* harmful in terms of public perception and research. If that's what anyone is promoting whether they are a doctor or not, I think the anger is justified.

Picking on some one's age rather than what they say is not warranted, though, and is kind of a petty personal attack. I will fully agree there.

 

I don't always agree with @Michael Leigh but I know he means well. I don't see the point in petty arguments with fellow board members. I always try to keep the discussions respectful. Having said that I think for some of us it is a big expense and having adverse effects early on is not a good sign IMO. He thinks that people tell themselves they will fail due to the influence of online forums. Funny thing is the advice of this board is why I chose to revisit WNG's in spite of having had a bad experience prior. A double edge sword

 

I think is a true believer in the advice he dispenses.

I don't agree with him on many/most things (other than headphones are probably a bad idea) and I think there is real harm in some of what he says but I think his intentions are probably good. He also seems to comfort at least a few people here as well so I'm glad he's here even though our perspectives are quite different and we would each find the others' point of view harmful.

 

@bobvann

You have always been respectful even when we disagree. This shows me that you were well brought up and have class. It is the reason I continue to correspond with you. I will cease correspondence with anyone that has no manners and is disrespectful. In addition to this, anyone that uses expletives during correspondence with me I shall give a wide berth. That is who I am and I'm not going to change.

Sooner rather than later I hope you try WNG again and follow the advice I have given. Keep away from tinnitus forums and direct your focus to other things. This will help to reinforce positivity something that I @fishbone and others in this forum, know how vitally important this is. Give yourself at least 6 months using WNGs and I'm confident you will see improvement. Carry on and by the end of 18 months to 2 years your hyperacusis will be much improved if not completely cured.

You have to stay with the treatment for it to work.

All the best to you.
Michael

 

I determined that WNG's do me more harm then good at this point. I know he feels that I gave them up on it too soon perhaps did not have the right mindset. I KNOW my body and what is right or wrong for it. As I mentioned before it would be pretty silly of me to stop something that had the potential to help. I have stopped as agreed upon by the Audiologist. As mentioned before will see what happens at my appointment next week.

 

At least you are taking action and trying different things/ways to help yourself live with your condition. That's how tinnitus and life is. I been doing this for a long time, and still keep doing this. I kept trying till I was able to find ways to manage/cope and live with this condition. Even If I was not in a positive mood, I still tried to make my life better even with the tinnitus.....

 

For sure I still do practice CBT aka mindfulness here and there. Since it is something that becomes second nature and you can apply it anywhere anytime doing anything. We have a 30 minute guided meditation session every Thursday @ work. I am disappointed with the WNG's I WISH they could help but one has to use common sense. The user manual warns you to stop if one has adverse effects. I realize this is most likely for liability reasons.

At least this Audiologist is not kicking me to the curb because I may not be purchasing their device. I would like to find a psychologist that works with tinnitus. The CBT therapist that was recommended for tinnitus really did not know much about it. Finding truly qualified practitioners that are not simply looking to line their pockets seems to be the biggest challenge.

 

Stuff like this can be quite helpful. It may not seem helpful at first, but it can really make a nice difference in your life.

Keep at it, I wish you much success...

 

Thanks man. I do enjoy your positive messages. I can tell it's from the heart and you truly are a humble person

 

CBT and mindfullness are 2 different things. Not sure why they get conflated.

For reference:
https://en.wikipedia.org/wiki/Mindfulness
https://en.wikipedia.org/wiki/Cognitive_behavioral_therapy

 

Because the 8 week session I took was called MCBT. M for Mindful. As mentioned I would like to try the actual psychological part with a psychologist since I have decent health coverage.

 

Anytime! If you need support, I'm here for that...

 

Combining 2 things doesn't make them equivalent, though: when I mix milk and chocolate to make hot cocoa, it doesn't imply that "milk is also known as chocolate".

I'm happy you tried the combo. Hope it helps you.

 

It did not even though practicing mindfulness can lead to overall relaxation.

This is what was recommended to me locally when I looked into options for tinnitus.

Along with clinicians not really applying the full TRT protocol these are the limited options I have locally.

No big loss since I see that these options have not helped a lot of members that probably have worked with competent therapists.

 

Pawel Jastreboff has most likely put tinnitus research back by a generation due to his insistence that his unproven model is correct in all instances. There may be some truth to what he says in some instances, but it’s foolish to believe that his ideas cover all aspects of the condition.

His methods have been at the frontline for a long time now and this has to have had an effect on how other scientists have viewed tinnitus. All of the audiologists I have seen have based their knowledge on his neurophysiological model of tinnitus and they all gave me the same outdated speech whilst showing me the same slides on their laptops.

When I spoke about newer ideas and methods, none of the audiologists had a clue what I was talking about. I had a distinct feeling that they were just following a script and they didn’t demonstrate to me that they really understood what it was like to have tinnitus. One of them told me to stop wearing earplugs whilst I was being exposed to damaging sound, for example. I had to tell her that I disagreed and made it clear that I thought her advice was wrong and dangerous to someone with tinnitus. This also contradicted what one of the ENT’s told me which demonstrates what a minefield of contradictory information is out there. One is likely to get various responses dependant upon who one sees rather than a well-defined, scientifically rigorous, answer. This is why we need more good quality research.

I have spoken candidly about this condition to many healthcare professionals both as a patient and as a friend. I’m in a fortunate position as I know many consultants, GP’s, dentists, etc, and it’s very different speaking to professionals as a friend as opposed to being a patient. I have learned that GP’s generally lack knowledge when it comes to tinnitus and hyperacusis, and I’ve had some good discussions with two clinical lead consultants who agreed with me that the condition is very misunderstood and mismanaged. Some of the GP’s I know were very interested in hearing about my experiences with the condition as they felt it may help them deal with other patients. One, in particular, was having a hard time with a hyperacusis patient so what I was telling her really hit home.

I’ve also spoken at length about tinnitus with the dentists that I know. Two are very close friends of mine and one recently removed one of my wisdom teeth. I knew I was in safe hands as I have talked his ears off about this condition over the years and told him what my concerns were. Luckily, no drill was involved but the lidocaine silenced my tinnitus for a couple of hours which was really bizarre.

We are now going through a kind of golden age where scientists and Drs and beginning to reassess what tinnitus is and how it could be treated. TRT will soon be defunct. It’s a very outdated protocol and we deserve better.

 

Agreed. Even here in the Netherlands some (young) specialists are now questioning the older generation's research. I spoke to one of them recently: he specializes in jaw treatment and had a lot of clean knowledge concerning the impact this body part can have on the auditory system. He actually "challenged" his old mentor (an ENT) when he started his own practice: his mentor did not believe that the jaw did have anything to do with perceived sounds, but he was willing to assist the young new specialist a bit where needed, I guess because of the mentor/student bond they developed.

After a few years, a lot of patients finally found some real relief due to the new treatment. This mentor acknowledged his own incorrect views, and is now more actively assisting and advertising for new treatment. They eventually found a cause for patients who could influence their tinnitus by eye movement, and managed to help at least some of them. These days the mentor is urging other doctors to please listen to their patients and their symptoms, no matter how strange or illogical they appear to be: he is now convinced that these common stories are indications for physical causes and (possibly) treatment.

Other physicians are still highly skeptical though, don't ask me why. It's almost as if cause and effect are actively being denied in the medical environment...

Still, I'm thankful for the open minds of this ENT and his (ex-)student. If more doctors are willing to act like this, TRT might not be required in a decade or so. Until then... well, I hope it helps some people.

 

With tinnitus being such a heterogeneous condition it seems silly to base it on such an all-encompassing model. Many believe that a one-size-fits-all cure won’t be possible and that the various etiologies and therapeutic possibilities make this condition a complex puzzle to solve outright.

So again, why base all tinnitus on such a simplified model? I strongly believe that those who are going to habituate will do so whether they have TRT or not, which kind of makes it irrelevant. It’s also obscenely expensive for what it is.

 

Someone posted a link to Pawel Jastreboff's site, so I tried emailing him. He actually responded within a few hours. I asked him his thoughts on using ear buds vs hearing aids and this was his response;

(I called him the father of TRT )

Thank you for kind comment.

I am not sure if I understand your question. If you are using combination instrument, which contains SG or SG alone then you are not using earbuds. If you are using different sound source then you can use earbuds while external loudspeaker would be preferable in majority of cases.

regards,
pjj
Pawel J. Jastreboff, Ph.D., Sc.D., M.B.A.
Professor Emeritus
Department Otolaryngology
Emory University School of Medicine
Founder & CEO, JHDF, Inc.


If I am understanding this right he is saying it is ok to use earbuds or a loud speaker (Bluetooth?) as options. He certainly does not rule it out.

 

Another response from Pawel Jastreboff.

Pawel Jastreboff: I AM NOT RECOMMENDING USING WH AND CHIMES IN TRT

Pawel Jastreboff: I AM NOT USING OR RECOMMENDING NOTCHED NOISE

Pawel Jastreboff: YES, MAINLY AT INITIAL VISIT. THE SPECTRUM OF NOISE HAS TO BE ADJUSTED IN SPECIFIC WAY AND THEN ADJUSTED CONSIDERING FEEDBACK FORM PATIENT. ON VERY UNIQUE CASES IT IS NOT POSSIBLE TO USE NOISE FROM SG.

Pawel Jastreboff: I DO NOT THINK YOU SHOULD PERSIST IN DESCRIBED SITUATION. YOU NEED FULL TRT WITH ADJUSTED APPROACH OT SOUND THERAPY. DEVICES ARE ONLY TOOL AND NOT SOLUTION

Pawel Jastreboff: THIS IS NOT RELATED THAT MUCH TO TRT. YOU CAN MAKE THIS DECISION AND CHECK WHAT IS MORE APPROPRIATE FOR YOU

There you have it. Pawel Jastreboff states that 1) WNGs may not help, 2) Hearing aids are not exclusively needed for TRT.

 

That's so true. There is nothing miraculous about listening to white noise or music. That is not even a treatment!

 

If you look at the answer of my 1st question he says he does not recommend the use of white noise or chimes in TRT??

Why is it recommended to use WNGs??????????

 

@bobvann

Your auditory system is oversensitive to sound. If you want that to reduce or ideally cured, then it's a good idea to use white noise generators, in the manner I have advised. Treatment can take up to 2 years. Unless you do this your hyperacusis (oversensitivity to sound) is unlikely to reduce and you will always have a problem with it.

All the best
Michael

 

Even though the man who invented the program says otherwise? Did you read my emails & his responses? This makes 2 professionals that advise to stop if it causes adversarial effects.

 

Those aren't treatments. A treatment has to identify the root cause of hyperacusis or tinnitus, the origin or damage done and repair it, and neither TRT nor WNGs do that.

 

It's not one size fits all. A number of members have stated it has not helped them.

 

There’s also this:

https://www.google.co.uk/amp/s/www....gests-tinnitus-hearing-loss-plasticity-neural

 

I have not read the email you speak of @bobvann However, I do not believe you have used white noise generators long enough. Furthermore, I advised you to keep away from tinnitus forums and especially do not discuss your treatment in them. I believe this is the reason you have not made any improvement. You haven't given WNGs long enough and you insist on visiting tinnitus forums.

All the best
Michael