Tinnitus Retraining Therapy

There's only two studies, regardless what data is used on 18 month TRT - one I posted a few posts above. Both studies show 1 of 2 quality of life VAS improvement. Both - no tinnitus improvement given. Full paid text discusses more.

What I noticed:
Both studies had participants with tinnitus under 2 years, so a plasticity model must be considered.
Both studies did not state participant depression scores. 41% or 43% (over 2 years of having T) are clinically recognized within most data bases. Because of this, level of tinnitus may be less on any intrusion data scales that some of us are familiar with.
Both studies did not state other pain & values or disease.
Both studies were not monitored by biomedical quality assessment teams - the same process that used in cancer studies or any medical study where a treatment or drug is being considered for FDA review.

 

I similarly noticed that participants were mostly tonal too. It didn't appear many if any had multiple tones. I would expect this to also influence results.

 

TRT is simply a moment in time for treatment of a poorly understood health condition. Jastreboff had the first big idea, and its entirely theoretical BS. TRT doesn't work and is very very expensive. It makes bold claims that getting used to the sound is the same as it not being there at all. Plus because you are being blasted by white noise all day every day there is a chance of further injury.

Now we've changed primarily to CBT, which is more honest about how it will help you (its just about your distress, not the sound) and less expensive. You don't need to listen to horrible abrasive noise all day, which is a nice change.

Hopefully we can get into some meaningful prevention (regulation of recreational noise levels, meaningful public health messaging around hearing damage) and, when the science arrives to market down the line, treatment.

 

I don't think so, the vets failed to change anything.

The VA cared about them so much that's why TRT rose to power.

 

Just a reminder that newer information seems to be shifting the tide away from TRT and debunking it as a valid therapy.

The 2019 randomized, placebo-controlled study at US military hospitals was the the first such rigorous study conducted and published, and it concluded that TRT is no better than placebo:

https://jamanetwork.com/journals/jamaotolaryngology/article-abstract/2734346


The website “Hyperacusis Focus“ presents the various non-rigorous studies done of TRT for hyperacusis and explains their flaws.

“It should be noted that there have been no proper sound therapy studies that include a placebo group, meaningful sample size, and random sampling of hyperacusis patients.“

“There is some inherent bias in the studies above as they require complete LDL testing at follow-up visits. If a person sustained severe and long-lasting setbacks during therapy, this person will be less likely to participate in LDL testing. This patient is more likely to be concerned that LDL testing will increase the risk of another setback. A requirement for follow-up LDL testing and completion of treatment separates those with weak tolerances from those with strong tolerances and inherently biases results. The degree that omission of dropouts biases results is unknown.“

“A conflict of interest that is likely unavoidable is that sound therapy studies are generally performed, analyzed, filtered, and presented by the treatment providers themselves.“

https://hyperacusisfocus.org/research/soundtherapy/

 

I agree. Everyone agrees -- woo hoo!

I've said this in the past, but I'll reiterate it. The more debilitating someone's condition is, the more desperate they become. All the smack talk that I give about TRT, and yet I still tried it and I still use some of the principles like sound exposure, improving emotional responses, etc.

Trust me, if someone is truly in a bad way, they will try things. There's a reason why I got in touch with a TRT specialist. I would eat poop every day and have my whole community point and laugh at me if it meant improving my hyperacusis. I certainly am not going to reject trying something because lord commander @Contrast dislikes it.

It's honestly pretty infantilizing to think that someone going through hell and back wouldn't even try something because of a few forum members. No offense to TinnitusTalk, but I don't care if every member is ripping a treatment; I'm going to assess it for myself and likely try it. Maybe this is harsh, but it's really hard for me to believe someone has a severe case, and yet they are unwilling to try anything (assuming they have the financial means, etc.).

I take a plethora of supplements every day. I've seen some improvements. These include curcumin, CBD, Ginkgo Biloba, fish oil, and ginger tea. And yet, I have seen people shoot these down. I have read many posts (and even studies) about Ginkgo Biloba being ineffective. I saw the poll that the majority of people were unchanged by curcumin. Yet I still take it. Why? Because the entire point of this whole thread -- made by everyone -- is to stop slamming treatments down peoples' throats when they don't work. Instead, one should treat themselves as the rare biological specimen that they are.

One of the reasons why I don't understand the fear that the new user will not try stuff is that the severe cases are very, very rare. Like 1 in 500,000 kind of rare. The reason why I don't care when I read a study that shows Ginkbo Biloba doesn't help is because there are probably only hundreds of people in the whole US with a similar medical problem to me. I feel confident that not all of us were a part of the study. There are no contradictions here.

By the way, to not be a hypocrite, I see nothing wrong with TRT people feeling the same way. You are allowed to believe in TRT. However, it's all about messaging. Notice that in my analysis above, never at any point did it cross my mind that the people who weren't helped by curcumin "weren't taking it right." Why? Because it's not a real, verified treatment for tinnitus. It may be helping me because of the rarity of my condition.

To conclude this point, I very much wish TRT people would view the treatment from the same level of humility. Maybe you were one of the rare people who was helpd by it independent of the passage of time. I think these people exist, but I don't think they are common. Just like I think there are people helped by curcumin, but it's usually just a placebo or the passage of time.

If I can be self-aware about my own "shot in the dark", why can't you?

Respectfully, this is just not true. What do you think Lenire's or Shore is? They certainly aren't cures. The attitudes in those threads are infinitely better than in the TRT thread. Why? Because there are videos of Jastreboff blaming people for not habituating, while there aren't the same videos of Shore. You are cherry picking one treatment and using that for your claim. I take curcumin, which is a treatment, not a cure.

I'm sorry, this quote is the one I just can't respect in any capacity. History is filled with examples of people seeing progress because they refused to be positive. Here's an incredibly insightful MLK quote.

“First, I must confess that over the past few years I have been gravely disappointed with the white moderate. I have almost reached the regrettable conclusion that the Negro’s great stumbling block in his stride toward freedom is not the White Citizen’s Counciler or the Ku Klux Klanner, but the white moderate, who is more devoted to “order” than to justice; who prefers a negative peace which is the absence of tension to a positive peace which is the presence of justice; who constantly says: “I agree with you in the goal you seek, but I cannot agree with your methods of direct action”; who paternalistically believes he can set the timetable for another man’s freedom; who lives by a mythical concept of time and who constantly advises the Negro to wait for a “more convenient season.” Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will. Lukewarm acceptance is much more bewildering than outright rejection.”

Does that sound positive or dismayed? The answer is dismayed, as MLK rightfully should have felt because he was right.

You cannot make people positive without giving them a reason to be. If everyone with severe cases was just positive, why would anyone have an interest in pursuing a treatment or cure?

Here's a promise @Michael Leigh: Anyone who bashes people with severe tinnitus who are negative falls into one of the following buckets:

1) Never had severe tinnitus. Sorry, you were scared with mild tinnitus. You don't understand what this disability actually is, while thinking you did out of pure narcissism.
2) Had severe tinnitus, but really, really bad at scientific thinking. Can't objectively separate themselves as a unique biological experiment from mainstream advice.
3) Had severe tinnitus, but feels guilty about being lucky enough to climb out. Pushes their treatment onto others as a form of cognitive dissonance, being unable to process that they could simultaneously be so lucky and unlucky.

 

The Negativity squad are out in all their glory....

 

I see parallels with how many other poorly understood conditions were regarded prior to further research emerging, e.g graded-exercise being encouraged as a form of treatment for sufferers of chronic fatigue syndrome/ME when actually it ended up being detrimental to many patients and worsened their condition.

 

@Zugzug

As you can see I have quoted the above from your post and ask you to please read my post again to @Contrast My comments are not directed at people who complain about the severity of their tinnitus and the impact it has on their life. It is those that denounce tinnitus treatments.

I will not be commenting further on this matter.
Michael

 

The person to whom you refer was excited that she was making such good progress with TRT and wanted to express the relief she was feeling. On hindsight I think she was a touch overzealous with her remarks, which resulted certain people ganging up on her that I thought was unfair. I don't wish to elaborate further as I gave an account of the experience in my previous post.

All the best
Michael

 

Calling people negative for denouncing a treatment is cruel, end of it. I hate comparing any health issue to another, but if one treatment didn't work for cancer (since people love that comparison so much for some reason), would you tell them it's all in their mind? Because they didn't believe in it enough? No.

I don't care TRT is more of a mental treatment than a physical one. The very fact it obviously doesn't work for some people, is enough reason to denounce it as a fits-all type of treatment or as some kind of holy thing. If it works for people, that's fantastic. It absolutely is. I'm happy for everyone who has any benefit from it.

But those who don't have any benefit from it will never, ever be ''negative''. And speaking against it being amazing and a cure/treatment for all is far from negative, it's realistic. I'll admit I've had my issue with seeing positivity threads being flooded with negative comments, but that's another issue and has nothing to do with the negativity toward TRT. *

Accusing people of being negative because they share TRT didn't work for them, or because they debate it's usefulness which is backed up by studies is abhorrent, sorry.

* I only have an issue with this, to a degree, because I think there's nothing wrong with having one or few places full of positivity, as long as other information is still accessible elsewhere. Unless someone is being quite rude and insisting it's perfect for everyone, of course (even then, tone matters).

Anyway, tldr;

Blaming people and calling them negative for having an issue with any type of treatment that has been proven to be useless for a big amount of sufferers and bringing up their issues with it being praised as the holy grail is gross. If it helps you, great. Accept that it doesn't work for everyone and leave them be.

 

MPP really did change the culture of this forum.

The silent majority became heard.

 

It is unfortunate that John has left. Although we didn't always agree I liked some of his points of view and his sense of humour, when it wasn't marred with the use of bad language.

Incidentally @Contrast I happened to see your post this morning to another forum member, where you mentioned I was your good friend. I was shocked to say the least and thought I must be seeing things, or you were having a bad day. I become more curious when I saw that you submitted links to articles that I have written. Just as I was replying to your post, I saw that it had been removed, perhaps by the moderator.

 

Lol I leave this place for a short time and the thread explodes...

1: Yes, it was proper TRT. I actually spent quite a bit of money to fly to the UK where I could work with someone who specialises in it.

2: Yes, I believed in it. I believed in it for years. I believed in it for years, even though my tinnitus kept getting worse and worse. But it hasn't worked, I cannot tolerate my sound generators anymore and my tinnitus (if unmedicated) is the worst it's ever been and you know what? Now I think TRT is a scam and blaming me for my lack of positivity for the treatment failing is just... really? Victim blaming much? Go away.

 

@Helheim

Since you had proper TRT, I am interested if you would care to explain the treatment you had? How often were your counselling sessions with your Therapist and the duration of each consultation.? It would also help if you can explain how you were advised to use the white noise generators. How to set their volume and length of time to be worn each day? Lastly how long did your treatment last?

I gather your tinnitus isn't noise induced but caused by an infection. Therefore, you may need additional help with an ENT doctor, to see whether you have an underlying medical problem within your ear that can be treated.

Michael

 

@Helheim doesn't owe you any answers, your behaviour was utterly disrespectful, you didn't even apologize and you're just looking for any detail that you can cherry-pick to explain why TRT didn't work for them.

 

Eh, I managed to get TRT for a very low price and it actually helped a lot with my hyperacusis (even though I didn't believe it would, I went from having to wear earplugs literally everywhere outside to managing daily life without any hearing protection, which is nice) *and* I got a nice trip to London out of it, so I'm not too mad, lul. It did absolutely nothing for the tinnitus though, which I expected so uh... Susan Shore pls

Not sure what you mean by "there's something either cheaper or better" though? Is there?

@Helheim

Do you remember writing the above post which you will find here: https://www.tinnitustalk.com/threads/i-was-right.27692/#post-318970

As I thought, you did not have what I call proper TRT which is a treatment that takes up to two years. This treatment cannot be effective by taking a nice trip to London to use your words. It requires a lot of patience, time and above all an open mind. Not negativity from the outset: "even though I didn't believe it would"

I am finished with this topic and I wish you well.

Michael

 

Unbelievable Michael. @Helheim stated that he got worse from doing TRT and you are victim bashing him and saying that he was too negative and that’s why it didn’t work. This is NOT OKAY.

A treatment should always work whether you are positive or negative about it.

If a cancer patient gets chemotherapy and it didn’t work for them are you @Michael Leigh going to say to them that it didn’t work for them because they were too negative and they didn’t believe in the treatment.

If you aren’t going to say to cancer patients that have tried chemotherapy that they were too negative and that's why it didn’t work then you shouldn’t be saying to someone who has tried TRT that the reason why it didn’t work is because they were too negative. This is NOT OKAY.

Show some bloody sympathy @Michael Leigh.

What if your parents tried TRT and it didn’t work for them and you told them they were too negative and that's why it wouldn’t work. They would beat you to death if you said that.

You should have apologised to @Helheim for victim bashing him. That is NOT OKAY.

 

First of all I am so sorry for your situation Helheim, and also for your ‘treatment’ experience.
You are absolutely spot on to walk away from all those misguided enough to label you ‘negative.’
Not only misguided but callous in the extreme.
Try not to accept criticism and arguments from those that clearly attempt to push some agenda of their own.
Having had tinnitus for over 30 years, I have studied it, read everything, and considered all options.
We know there is no treatment, and may as well forget about a cure.
This wretched beast has been around for as long as human habitation, and in all of that time, no one, no drug, no gadget, no practice has ever reduced the volume of it by one single decibel.

I am a realist, some would say a skeptic, and my instinct for self preservation has guided me well away from any ‘treatment’ involving and introducing any further noise into my aural cavity.
When I received hearing aids with white noise generators I switched off the white noise aspect within ten seconds - maybe five.
A damaging scam.
Likewise, I saved myself a good £3000 pound by rejecting the whole idea of Lenire.
Where noise has crippled our hearing, and to a large extent, our lives - additional noise will only exacerbate the situation, leaving us worse off.
You must not blame yourself.
I am not at all surprised that many people go for these options.
As many of us suffer so much, it is clearly a ‘seller’s market.’
Beware of all claims of success, and suspicious of all recommendations that may come with a commercial element to them.

Tinnitus cures are a bit like buses.
There’ll be another one along any minute.
You’d be better off to keep your bus fare in your pocket.

And now something I can recommend.
It seems to have become fashionable on Tinnitus Talk to pooh - pooh all forms of psychological assistance.
Left to our own devices, we only have stoical acceptance.
Psychotherapy, even hypnotherapy may help us to alter our mind set to it.
What I do thoroughly recommend is the practice of daily meditation, as guided by the principles of mindfulness, found in the books of Eckhart Tolle.
The cost to you is just the price of a book, which you can work with on your own, as a project.

In a scenario where there is absolutely no help for the sufferers, I am continually surprised that all forms of psychological support are rejected by most.

Best wishes
Dave x
Jazzer

 

So I'm guessing everyone that didn't benefit from Lenire was just too negative. They still went to London to try TRT. Also, just read McKenna's recent study based on 9 patients, one of the patients also said he didn't believe mindfulness would help but it did nonetheless. So just because you're sceptical of a treatment, doesn't have to mean it won't work. You'll disregard any evidence that TRT can be harmful or simply not work for everyone even if that person had "an open mind". You even agreed with Pawel Jastreboff saying that only negative people and people on benzodiazepines don't benefit from TRT.

 

Michael, you have undoubtedly helped and supported people on this forum and no one can take that away from you, but amongst doing this, you have bizarre moments of being rude and disrespectful to people and I don’t understand why.

There are no effective treatments out there at the moment, only management strategies, and these will not work for everyone. You have to accept that. Just because something worked for you doesn’t mean it will work for everyone else who tries it. TRT is not infallible.

You cannot then blame the patient when it doesn’t work, that’s ridiculous. You should apologise, move on, and rise above the notion that TRT can fix everyone. Many people eventually habituate whether they have TRT or not so it’s difficult to assess exactly how efficacious it is, but the overall evidence suggests that it’s more than likely just a placebo effect when used in the treatment of tinnitus.

Above all else, people need help and support on here.

 

Thank you @Ed209 for saying this. I agree @Michael Leigh has helped members about advising them to not use headphones which I believe in.

But I do find it odd that when it comes to TRT, @Michael Leigh seems to only accept that TRT works for everyone and for those that have tried TRT and it did not work for he is rude and disrespectful by blaming they were too negative.

 

All those who throw around the label of ‘negativity’ are simply projecting their own arrogant egoic negativity onto others.
Well I’m sorry ML - we can spot your game
- a mile off.

 

A valid treatment ought to be good enough that a negative placebo effect can’t strip it of all benefit.

 

It's all good. Just gonna put Michael on my ignore list and be blissfully unaware of his constant victim-blaming from now on. Putting those damn sound generators on is one of my biggest regrets and I wonder where I'd be today if I hadn't constantly irritated my hyperacusis and T with white noise, but hey, I guess I'm never going to find out. Cheers everybody, thank you for standing up for me!

 

Lmao Michael Leigh loves calling out other people for being 'disrespectful' yet he creeps people's post history just to rate Funny on people's posts about genuinely struggling.

 

"Don’ts

• Change your lifestyle because of tinnitus.
• Change your alcohol or caffeine consumptions because of tinnitus.
• Change your diet because of the tinnitus.
• Listen to background noise or music to distract yourself from tinnitus.

People often benefit from various forms of therapy that help them to learn alternative ways of cognitively reacting to tinnitus which will modify the emotional disturbances caused by their tinnitus. This makes it possible for tinnitus percept to lose its significance and fade away to the background instead of being in the centre of the attention. The main factor which contributes to tinnitus severity is the annoyance it causes, not necessarily its loudness. A specialised method of Cognitive Behavioural Therapy (CBT) which is a form of talking therapy has shown to be effective in management of tinnitus. CBT can help the person to explore and modify the process that produces tinnitus-related annoyance. Majority of people who undergo CBT gain the essential skills and knowledge in managing their tinnitus-related annoyance within 6 sessions. Once the annoyance caused by tinnitus is subsided, with the help of CBT, it is likely that the perception of tinnitus also reduce."source

They really don't see tinnitus as a condition that can be debilitating in itself, it's just your emotional reaction. Anyone that's limited by it in any way just needs to understand that it's a non-issue.

 

Man, my CBT therapist refunded me halfway during the course because he felt he couldn't help me and didn't want to keep taking my money because all I did was cry through the sessions (which, by the way, were in the quietest room you can imagine, making it even harder with screaming T). Good times. But hey, at least I tried!

 

The first thing I would ask people like Dr. Aazh is, do you suffer from long-term tinnitus yourself?

I noted a post on the forum recently where someone outlined the fact that cancer is often cited when drawing comparisons about the level of sympathy/empathy these and tinnitus patients may receive. There was something in this statement that really struck me.

Generally cancer is something that a clinician can see. It shows up on scans, there are various markers for it in blood tests, etc etc. Tinnitus, minus any obvious mechanical damage within the auditory system often does not "show up", however.

I think the fact that an oncologist can objectify cancer makes it much more simple for them to understand and even empathise with a patient's suffering than perhaps a consultant treating a case of tinnitus. Therefore, maybe the lack of sympathy/empathy often noted in tinnitus consultants might very well be a flaw in their own psychology.

What they fail to understand is that it is as equally outrageous for them to tell those of us in crisis to go away and deal with it because it's just a noise, as it would be for an oncologist to tell their patient to go away and deal with it because it's just a lump. They need to understand the reality of this condition, and unfortunately, minus any objective marker, this often means being a sufferer oneself.

 

There is an empathy problem in society, in general. I think these psych based treatments are an extension of that.

You shouldn't need to suffer from tinnitus to feel concern for those that do just like you don't have to have so called "suicide headaches" to appreciate that people with them suffer greatly. You just have to be able to observe people with empathy and see that they are truly suffering.

I really think the purpose of toxic positivity is as a means for someone without real empathy to feel better about themselves and isn't even meant to do anything to help sufferers. It's a socially acceptable way for people to victim blame and still end up looking good.