Tinnitus Retraining Therapy

Unfortunately, the downfalls of the treatment will always be viewed as "whining from the crazies on the forum." We need more advocates to make sense of it. Maybe I am just shouting into an echo chamber, but I hope by engaging with people like Michael, he will eventually see the light enough to stop victim-blaming people for their "bad attitudes."

If not, at least I get to shout metaphorically, as I haven't shouted literally in a long, long time.

 

Not quite, only the negative thinkers believe TRT is a scam....

 

Veterans were manipulated by the TRT mobsters, but they never paid attention to what was going on. The reason why the NIH and VA invested heavily in TRT from 1990-2015+ was because they had lots of complaining veterans and no other sources but Jastreboffian literature.

Jastreboff filled in a niche in the late 80's-early 90's that no one else was addressing.

Jastreboff and those like him became the dominate and only voice in the field of tinnitus/hyperacusis research. Scientist didn't really start showing up until the turn of the 2010's when tragic cases like Cindy and Gaby appeared, and activist like Bryan and Joyce started showing up. It was only tragedy that brought scientist to study the biological properties of tinnitus seriously.


Now here you guys are 30+ years behind thanks to TRT.

 

It has been posted many times before, but as a reminder, after years (decades?) of waiting, we finally have a scientific study about TRT that was published in 2019.

It is a large scale, randomized trial with placebo control conducted at United States military hospitals.

The conclusions:

Findings In this randomized clinical trial of 151 participants with 18 months of follow-up, average tinnitus distress decreased in all 3 groups. There was no clinically meaningful difference in extent of reduction in tinnitus distress or other important end points among patients in the 3 intervention groups.

Meaning Tinnitus retraining therapy with conventional sound generators is no better than tinnitus retraining therapy with placebo generators or standard of care.

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

 

This study is showing that when TRT fails it isn't because it wasn't done correctly, it's just as effective or not when done incorrectly or with placebos. And placebos are famous for needing positivity to work.

 

What Leigh doesn't understand is that in the US, PEOPLE DO NOT HAVE FREE HEALTHCARE.

They pay out of pocket for this garbage and get let down. The reason why America is a bit more ahead then the rest of the world in terms of diagnosis is because when people pay out of pocket they become more skeptical.

 

I've had two experiences with TRT. The one was an ENT, who knew nothing, and gave me a pamphlet for expensive sound generators, as well as tell me to get an MRI because he has tinnitus and he gets them.

The other was sincere. He wasn't trying to get rich off of me -- he really just believes in TRT and wanted to help. When it wasn't working, he didn't victim blame me. He was even honest that he didn't think he could help.

I don't think all TRT people are scam artists, which is why I don't hate recommending the concepts to people to see if it helps. But it becomes a scam quite quickly when we start talking about "not doing it right without the expensive sound generators." This is total garbage, as one can definitely get a feel for TRT by just going on YouTube.

 

Wow Michael so you are coming clean and saying TRT is a scam.

 

I thought you knew me better than that @jay777 evidently not. Haven't seen you in a long while and thought you left the forum with your friends Threefirefour and JohnAdams….

Hope you're keeping to the recommended 2 meters social distancing, although tomorrow we are allowed to travel long distances in the car. Brighton council is asking all tourists to please stay away, so please adhere to the request if you have it in mind to visit the seafront.

I am kidding of course....

Michael

 

A real working treatment should work regardless of your mindset. A positive mindset should only attribute to noticing positive changers better/faster - it shouldn't rely on it to work entirely.

Again, I'm really glad it works for some people and I won't go against those experiences. If people get relief from it, which I believe many will from basic principles, then that's great.

However it's not a cure and it's definitely not a great treatment if it doesn't work for many. Their attitude shouldn't matter, and blaming the treatment failing on their attitude is ugly.

I'm repeating myself at this point so I won't say more.

 

I am too. Honestly, I feel like I've articulated my point about as clearly as one can without making it emotional or personal. I really don't understand how the connection to victim blaming isn't seen.

How can you tell someone their attitude is the reason they aren't improving from a disease and not see it as victim blaming? I rest my case, until tomorrow when I try again for some reason.

 

Are you still peddling TRT around here?

 

I doubt Michael will see the light if he is in to make a quick buck out of others pain and misery...

 

Unfortunately it is not as simple as that. TRT, CBT, Medication etc for tinnitus are all treatments but they are not cures. Remember, tinnitus is intrinsically linked to a person's mental and emotional wellbeing and therefore it affects them. Tinnitus can increase stress and stress can increase tinnitus. Stress and our emotional reaction to tinnitus or the affect that it has on us needs to be managed. For this reason tinnitus counselling can be helpful and is used as part of TRT and CBT. Don't forget life is problematic and we all have problems. A lot of people that have difficulty managing and coping with tinnitus, often have additional health problems or relationship problems, work etc. These things will have an impact on the tinnitus and how a person is able to cope with it.

Michael

 

That's not what I said, though. Yes, I agree with you that tinnitus is linked to our emotional well-being to a degree. There's no arguing about that. I do believe that certain principles of CBT and TRT can be helpful for almost anyone dealing with tinnitus, and applying them to your daily life is good not only for tinnitus but for many issues people may face in life. I've been doing it for a few other issues.

But what I meant is that, if a negative mindset is to blame for TRT failing, what good of a treatment is it really? Tinnitus is often devastating, and the last someone needs to hear is that their mindset is what made them fail a treatment. If it's as helpful as it's supposed to be, it really shouldn't rely on someone believing this treatment will help, because it should regardless.

Again, the last someone suffering needs, is to be blamed for not having any benefit from TRT. That's adding insult to injury, which is precisely what I'm getting at. If it really needs that to work, it just isn't that good of a treatment - which is why so many here argue against the way it's praised.

 

I don't think people are upset because TRT isn't a cure and is being touted as one. The conversation is about it as a treatment.

The very, very best I can do is say that some of CBT is about believing in it -- just enough that you are actually doing CBT. But constant noise enrichment should not depend on attitude. If the treatment starts to help, the patient's mindset will naturally start believing in it, and positive vibes will be gained towards the treatment.

 

My main qualm with this whole ordeal is the noise generators; I find positivity and talk therapy more innocuous, but still potentially dogmatic and misleading.

Years ago I was suggested noise generators for a mild onset of hyperacusis, and noise therapy very much helped me; the end result was: in the placements of high frequency damage, my H and T were replaced with hearing loss. I am very fortunate that there was not a further domino effect of cochlear damage, and that everything stabilized, and my life normalized. However later on, I had a recurrence of symptoms, and again tried noise therapy, and the exacerbation it prompted is how I found my way to tribulation.

I don't believe that assuming noise exposure anatomically manifests in the same way for every individual, regarding a highly subjective and idiosyncratic disease, is at all responsible. I also don't believe that assuming every new tinnitus sufferer who has had a battery of tests only to confirm the etiology idiopathic, must actually have noise exposure as causation since they have worn ear buds in their past; and so therefore they will benefit from TRT.

Furthermore, I feel that the previous discussion here of individuals critical of Michael Leigh seems to be of 'how not to handle' newbies, and that perhaps it would benefit from more suggestions of how they feel those circumstances should actually be addressed.

P.S. @Zugzug, Lok'tar Ogar

 

Medical professionals wonder why "crazy people" fuss about health problems and why health topics attract crack pots (like me).

The reason why lay people without medical knowledge discuss medical topics is because the topic involves SOMEONE'S HEALTH. Bad Biology is torturous. Damaged nerve cells cause pain and ruin life. Durr... It's perfectly logical why the internet is a breeding ground for crack pots like myself. At least I'm not the dangerous kind of crack pot that discourages cancer treatment or advocates for B.S like homeopathy. I don't promote anything. I just talk about the philosophy is suffering.

I am philosopher.

 

TRT is most helpful of all the unhelpful treatments. In the far future it will be regarded like a stone age technique that had barely any foundation. Noise on noise is not such a great combination. It is just another way to get into the habituation train, but there are so many and unexpected ways to do so. After my 6 years of uninterrupted hell my main recommendation is to do absolutely nothing after passing by all the ordinary ENT and audiologist tests to find root cause (90% of the cases are hearing loss that is irreversible as everybody knows).

 

No

 

A lot of people that I have corresponded with who claim to have tried TRT and found it not helpful haven't had TRT at all, as I previously mentioned on this thread.

Many people that say TRT and CBT are not helpful believe information on websites written by people that have never experienced tinnitus, so haven't the need to try these therapies which are long term treatments, often lasting 1 to 2 years. Some members are quick to paste links to these websites in the forum pleased that others are telling them what they want to hear.

The people that I say have a negative mindset towards tinnitus and treatments bring a lot of this upon themselves. Please read the contents of their posts that are often full of negativity. I am not talking about people that express their difficulty coping with tinnitus and how it affects their daily life. The people that I am referring to know who the are and often write long posts blaming their government, health organisations and medical professionals for the plight in life. I believe if tinnitus was really that debilitating for these people they wouldn't be able to be writing posts hour after hour in this forum.

I have a lot of experience corresponding with people at forums and on the telephone, and can usually tell within a short while how that person is being affected by tinnitus. People that have difficultly managing tinnitus want help and don't look to start confrontations and arguments with people like myself that visit this forum to help people.

Michael

 

How convenient for you to say and we're just supposed to believe it. What matters is that there are people who have genuinely tried TRT and didn't benefit from it or even got worse.

You call people negative for far less. Also, calling out organisations that are supposed to represent all sufferers for their lack of urgency in finding a cure doesn't have to be negative. Oh, but I forgot, it's you who gets to decide what's negative or not even if others wouldn't necessarily agree with your judgement.

Here you go again saying that you know who does and doesn't have debilitating tinnitus.

Oh, and you also know who really wants help and who doesn't! Your posts are regularly belittling, demeaning, hurtful and can even be insulting. You're also not open to changing any of your opinions as you see absolutely no need for that. That's why people are calling you out.

 

I also agree.
Many with an onset of tinnitus will feel anxiety. Ones that can control their anxiety at some point ( the quicker the better) often will realize that their loudness wasn't as loud as they thought or their acceptance is better. Or by controlling anxiety, newer recipients (Maybe under 18 months) many find that their tinnitus has faded.

Also with tinnitus, any physical problem with discomfort or pain must be considered. Age has no barrier with this, but it was mentioned that there are more older members here and I don't see many posting.

For those with longer term loud tinnitus where control methods are not helpful, I believe that they should monitor their blood pressure: eat good foods - hypertension, drink water and maybe hypertension drugs so a further chain of events does not happen.

 

Respectfully, can you please answer my question about the hypothetical of someone greatly benefiting from TRT without believing in it?

Are you willing, the next time someone posts a success story with TRT and talking about having majors doubts and being "pleasantly surprised," to scold them for their bad attitude and say that they got better in spite of their bad attitude? My guess is no. You would probably think that their story was a nod to the usefulness of TRT.

If you don't have the nerve to scold a success story (where the person is now safely out of the suicidal zone), you certainly shouldn't be scolding suicidal people.

Also, something I strongly recommend you consider: My understanding -- and correct me if I'm wrong -- but when you did TRT, it wasn't a major out-of-pocket expense. One reason why people are rightfully very sensitive about the talk of "you're not doing it right" is because many severe cases of tinnitus consist of highly disabled people without much money.

It's actually a pretty big leap for someone, who's down to their last few dollars, to go from pink noise on YouTube to expensive sound generators. The scientific evidence has to be worth it.

My guess is you would be accused of promoting a scam less if you dropped the obsession with "doing it perfectly." I don't think my TRT audiologist is a scam artist because he never promoted anything expensive. When it wasn't working for me, he understood that the principles weren't that helpful for me. Now if he would have said that I wasn't improving because I didn't have noise generators, I would have a very different opinion of him.

 

I am getting somewhat tired of this behaviour. When you have something important to say that is worth my while reading and answering your post then please do so. Please do not rush give the matter some thought.

Good bye and I wish you gooday
Michael

 

It's not even a hypothetical intellectual exercise. I am actually interested in how you explain the person on the CFS who benefited from TRT without believing in it. How did they get actual TRT treatment if they were negative?

It sounds to me like you are praising people who became positive because they improved, and scolding people who became negative because they didn't improve. Aka, victim blaming.

 

Funniest thing I have ever read on Tinnitus Talk and there are some funny characters on here.

 

The problem is we are aware that most practitioners are in it for the Benjamins. As mentioned, the research convention that was supposed to be in Vancouver next week was supposed to be led by Carol Lau who I had a very bad experience with. In the same correspondence I had with Jastreboff he basically stated that she had programmed wrong sounds for TRT. This is from someone that claims on her site that she will more or less solve tinnitus which we know is not guaranteed.

One of my main gripes is there is no accountability on their part if it makes one worse.

https://soundidears.com/what-we-do/tinnitus/

 

Usually you type full essays to respond to people. A simple yes/no response is odd.

 

If he firmly believes in his message, then it's probably a consequence of his self-delusional traits. Suppose the advice @Michael Leigh dispenses ad nauseam here on TinnitusTalk was actually validated through his own experience, then I could at least tolerate his presence on a public forum. But... TRT most assuredly did not help him. And his suggestions for not overprotecting have a hollow feel to them because overprotecting or not, he doesn't even know what it means to have achieved habituation!

Understand this: @Michael Leigh is struggling just as much as the next guy. However, by coming across as someone who has it all figured out, tinnitus forums represent a place where he can collect his daily dose of social capital providing him with an elevation of his petty existence. And that's why he is here, day and night, all year round, preying on newbies who have yet to comprehend his ulterior motive.

If in doubt, see just how habituated he is right here: