Tinnitus Retraining Therapy

In the passed you have always been respectful towards me. Therefore, please take note of my comments to @Jack V as I will not reply to anyone that is insolent and disrespectful. The links I submit to my posts contain information based on my experience with Noise induced tinnitus, which I have found to be helpful. Everything I have written and nothing is copied from websites, unlike some members do in this forum. I do not insist that people read my posts but advise it when I think they may be helpful. I have spent a lot of time writing them, not for self gratification but to help people afflicted with NIT and have difficultly coping with it.

I do not insist on people messaging me for counselling but occasionally, I see someone having a particularly difficult time coping with tinnitus and may benefit from one to one correspondence, and suggest they PM me. It is their choice. I do not do this for everyone. Again, I do not regard myself as a tinnitus expert but if you see me as that, then that is your affair not mine. I will not be commenting further on this topic and wish you gooday.

Michael

 

Respectfully, there is one big difference in our viewpoints. If I knew someone with severe hyperacusis and they did TRT for 12 months and improved, I would think there was a chance it helped, and a pretty big chance that it was largely just the passage of time or some other reason. You would think it was all the TRT.

The core issue really is believing too much in TRT. You are a good person; therefore you want to help others. The best way to help is to insist on something you fully believe will help them. It makes sense; I would do the same thing if I believed in a treatment so much.

The reason why people get upset with you is because you don't read the actual studies on TRT, attempting to highlight the fact that a simple truth is that people with tinnitus often just improve with time. You could eat a pack of smarties every day for a year. And 90% of tinnitus sufferers are going to probably see improvement. Should everyone eat smarties because 90% of tinnitus sufferers who eat them improve within a year? This line of reasoning emanates to high-level ENTs who read these dumb TRT brochures talking about a 90% success rate. This isn't science my friend.

Another thing that frustrates me about your style is that you greatly cater to the people who are new and scared, but ultimately have mild cases that will improve with time. Meanwhile, you never catch the hint that almost everyone with a severe case can't stand your advice. Did you ever consider that these people need your help the most? You seem to be an advocate because you care. What if you channeled that advocacy into helping the worst of the worst and letting the mild cases deal with it?

Did you ever consider when you tell new people to ignore the worst of the worst on the forums that you are just getting virtue points by helping someone that would improve with time? Meanwhile, the people who truly need biomedical research are just scumbags on a forum with bad attitudes?

There's so much that you just don't get. I, too, want to improve and become a mentor. I don't blame you, but I think you need to sincerely question TRT more.

 

Spot on. You shouldn't apologize. If a precocious high school student said they wanted to cure their mom's cancer, you would never tell that kid to shut up and stop with the negativity. It turns out -- imagine this -- you can do both: trying each and every day to barely get by and wanting a cure.

 

The only reason new comers have faith in TRT is because they are desperate and ENT's are just flowcharting the option.

 

I literally don't understand how that post could be construed as somehow lacking in manners and 'disrespectful'.

 

I wouldn't be so "against" TRT if it was presented like this:

While not a cure, it may help desensitize some people to tinnitus so it is worth a shot.

However, especially in severe cases, if you don't get improvement, it isn't your "fault" for being too negative or not believing in it strongly enough. Everyone who starts a treatment wants it to work or they wouldn't bother (treatments that *only* work with positive thinking are likely to be placebo anyway). Don't worry about your worry. That's normal and it would probably increase anxiety to try to stifle it unnaturally.

So, try the treatment (unless you have H and then I'm not sure), it probably won't hurt. Some people do find it helpful. However, if it doesn't work, don't view it as the only option, there are treatments on the horizon that look very promising and forums are a great place to find out about them (as well as info about various etiologies, some of which are treatable now).

 

I have told you that I have no wish to continue with this topic and yet you insist on provoking me. If you continue you will be placed on ignore. I am here to help people with tinnitus not to engage in arguments or to explain myself to people like you.

I have had noise induced tinnitus for 24 years considerably longer than you and have experience in it. I offer help and support to people that ask in his forum and others that I visit. There are basically three ways tinnitus can be treated and I have explained this in many of my posts. They involve counselling, sound therapy and medication, which can be incorporated into: TRT, CBT, Mindfulness, relaxation therapy etc.

If you and others of your ilk, spend your time reading studies on tinnitus and TRT or other treatments for Noise induced tinnitus, as a why of habituating to the condition, then you won't learn much and therefore, it's pointless you being here, if all you want to do is paste website links to data that has been written by health professionals that have no long term experience of coping and managing tinnitus or hyperacusis. The only way to learn about these conditions is from people that live with NIT for some time.

It is for this reason most (but not all) ENT doctors don't know anything about tinnitus and I mean living with it. They treat underlying medical problems that cause tinnitus of which there are many. The ENT doctor will try to treat it medically or surgically. In the case of Noise induced tinnitus, the patient is referred to Audiology, at least that is the practice in the UK. They see either a Hearing Therapist or Audiologist and treatments are offered of the type that I've mentioned: Many of these health professionals were either born with tinnitus or acquired it at some time in their life. This is particularly helpful when counselling is given for tinnitus, as the only way a person can give good quality counselling for this condition is to have experience living with it.

Michael

 

So what about Pawel Jastreboff and Jonathan Hazell? Both of them have zero personal experience with tinnitus and hyperacusis and have clearly created a cult-like environment surrounding TRT. Everyone that doesn't benefit is just a non-believer. They make it absolutely clear that they believe loudness doesn't matter and that it's purely your reaction that causes the distress. Supporting them means harming severe sufferers.

 

TRT does address hyperacusis and in my case completely cured it in two years wearing white noise generators. This took place over 20 years ago and the hyperacusis has not returned. A person in this forum who was about to start treatment with his Audiologist, who specialises in hyperacusis treatment. Told him, all her patients have been cured of hyperacusis following her treatment which takes approximately 18 months. He was told only one white noise generator needed to be worn and not two, the reason being the brain has only one auditory centre for hearing. The Audiologist said the only patients that do not make a good recovery are those that do not follow her treatment plan. Regular counselling is also offered. The Audiologist has lived with tinnitus for a number of years and has a good understanding of the condition and the way it can affect a person's mental and emotional wellbeing.

I have had TRT twice with good results. This was the full treatment and not a scaled down version of it. It can take up to two years. It requires the wearing of white noise generators in my case worn for 8 to 10hrs a day. This treats tinnitus and hyperacusis if it is present. I also had regular counselling for the duration of treatment. I have corresponded with people at various tinnitus forums and been told they are having TRT. When I have asked questions what their treatment entailed it is not TRT of the type which I have described. For this treatment to work it needs to be administered properly and for the person to keep away from tinnitus forums, not discuss the treatment in them once they start, for the reasons expressed by negative thinking people towards TRT, CBT etc.

Negative thinking people have convinced themselves that no form of tinnitus treatment will work and therefore, will accept nothing less than a complete cure. Anyone that says they are having success with TRT, as recently mentioned by a tinnitus talk member, is ridiculed and chastised for making such a claim. The negative thinking people rush to gather information from websites and paste in this forum to refute such claims, and say TRT does not help tinnitus or hyperacusis with the wearing of white noise generators. I am referring to tinnitus that is Noise induced, which is one of the most common causes of the condition.

Michael

 

Well, I guess if you get to say the same thing over and over again, I do too:

Bryan Pollard said on a recent Tinnitus Talk Podcast episode:

• There was a study earlier this year by Martin Pienkowski that was entitled ‘Rationale and Efficacy of Sound Therapies for Tinnitus and Hyperacusis’. In this paper he concluded that there are too few placebo-controlled trials that help to demonstrate the effectiveness of any sound therapy treatment and he highlighted that, especially for hyperacusis, only a handful of studies, mostly case reports, showed true benefit for hyperacusis, broadly speaking.
• In more specific discussions with clinicians, as well as our own survey data, I have found that for those who have hyperacusis with pain, there is some evidence to indicate that they get much less benefit from either Sound Therapy, broadly, or TRT overall, than those who have loudness hyperacusis.
• With pain hyperacusis, earlier this year in talk on treatment for pain hyperacusis, the spokesperson said that we treat pain hyperacusis completely independently now from loudness hyperacusis and it requires a much more tailored approach and, also, we typically don’t expect the same outcomes as we do with loudness hyperacusis.

Results are expected to be this good if you leave out all the patients that had to stop the treatment due to worsenings and then blame said patients for not getting better.

Oftentimes, those people also make statements such as TRT being good for every tinnitus/hyperacusis patient which is worthy of being challenged and discussed. The person you're probably talking about also literally said she doesn't believe that millions of people are struggling due to tinnitus even when shown the numbers by the ATA.

The conversation is clearly more nuanced than that with many people having said they're not against CBT, mindfulness and TRT per se but against the patient-blaming narrative that oftentimes comes with these approaches.

The truth is that for millions of people nothing will work until we find real medical treatments.

 

I don't know, man. If "negative thinking people" are the ones who want a cure and/or actual working treatments (TRT isn't a treatment and it doesn't claim to be), then I guess @Markku and @Hazel (and a bunch of other great people here at Tinnitus Talk) are negative thinking people? They work tirelessly with this forum, trying to organize us as a patient group, making our voices heard and reaching out to researchers to influence the medical world with the end goal being to find a cure or a working treatment. I gotta say, this doesn't really seem negative to me. It seems more like something optimists would do.

On the other side, according to this logic, "positive thinking people" must then be people who are fine with the status quo because it happened to work for them and for some reason don't want better treatments or a cure so that other less fortunate people also can be helped? Am I interpreting this right? Man, that is pretty sinister.

If "continuing the fight to keep negativity alive" equals fighting for a cure or a working treatment then I guess you're the only "positive thinking person" on this forum.

 

I knew it wouldn't be long before you surfaced and have nothing more to say to you.

 

I am not in the least surprised that you do not understand.

 

Michael, that comment literally did not contain any personal or ad hominem attacks, it was literally just raising valid objections to your argument. It's funny how you go on about respect and manners and yet the comment you just made to me was pretty rude...

 

Your funny emote against my post?
I rest my case.

Michael

 

Every single time somebody makes a valid criticism of your arguments you shut people down and resort to your worn-out 'manners and respect' spiel instead of, y'know, actually engaging with people's arguments. Maybe that's why people find your posts funny...

 

What is science if not for engaging in arguments? One of the reasons why I engage with you is because I think deep down, you want to help people. I'm trying to give you a perspective on where that doesn't happen.

But I thought you didn't claim to be an expert. Yet, precisely what you are doing is overriding my opinions and research on the problem because I don't "know as much as you." You always want it both ways. You want to be the hero, but trash the people with severe cases. The consultant, but not the expert.

My life is a horror movie. I can't talk, whisper, work, drive, leave my house and because mine isn't noise induced, it won't stabilize. I've had my life upended and ruined in my 20's with a condition that -- when factoring in severity -- affects 1 in hundreds of thousands. But you're still whipping out the "age" card.

Guess what? I've had acid reflux disease for my entire life. I even have a precancer condition in my esophagus and nearly got surgery a couple years ago. And yet, 1 month with my hyperacusis situation has been 100x worse than an entire lifetime of acid reflux. It's really sad that you whip out the "amount of time" card when you're arguments are lacking. Again, you aren't interested in science. If you were, you would like disagreements.

 

@Jack V's post was the most even-toned, non-offensive attempt at interacting with you. I didn't even read his post with anger, it felt like I was reading legitimate philosophical questions. I actually was curious how you would answer them (not trolling).

I will ask again. Why is it appropriate for other diseases to ask for cures, but not tinnitus/hyperacusis? Do you think any disease that is cured with positivity is serious? Do you think TRT has no placebo effect?

These are legitimate questions (imagine a non-sarcastic tone). I honestly want to know what you think about FX-322, Lenire's, Hough Ear Institute, etc. Do you think Tinnitus Talk would be able to build connections (through podcasts) with research institutes if everyone on this forum was happy-go-lucky thrilled about TRT? What is the value of TRT, if not a placebo, if it already exists?

 

I'm glad he is here because he seems to have helped some new, very stressed/scared people feel more reassured but you have highlighted exactly why I find him so frustrating to engage with.

"Respect" can mean: "treated like a person" or "treated like an authority."

If he doesn't get the later definition, he will accuse you of "disrespect" and then not give you the former definition of respect.

 

I don't visit this forum to argue as that is a complete waste of my time. Constructive debate I will engage in but only up to a point. Impudence and bad behaviour from anyone that I correspond with I quickly give a wide berth.

I advise people on Noise induced tinnitus, because that is what I am familiar with. Since your tinnitus wasn't noise induced, I don't think I can offer any help. I am sorry to know of your other ailments and hope you are able to get some professional medical treatment.

Take care and I wish you well.
Michael

 

Michael has always been this way so I doubt he’ll change any time soon. He rudely accuses others of being disrespectful for merely disagreeing with his opinion. In fact, I’ve seen him be rudely dismissive of people for much less. I think the irony is lost on him.

You will have to wait at least another 30 years until you’ll be viewed as being worthy of holding a conversation with him about tinnitus or hyperacusis.

 

Thanks for wishing me well. I wish you well too. I hope that one day you will see what others are saying.

 

Lol Michael is like... the poster child for TRT brainwashing. Don't expect him to consider any perspective that is not his own, and I say this as someone who's done TRT (and got nothing out of it, because, you know, it's a scam).

 

Michael needs to learn that not everyone benefits from TRT.

It is rude when he says the reason why it doesn’t work for you is because your too negative. I dislike when he says that and know majority of us members on this forum don’t like it when he says this either.

If he could rephrase his sentence in a more pleasant way something like this “TRT helped with my hyperacusis and tinnitus but it may not work for you but you could give it a try and see if it works”. If he said it in this way I would respect him even more.

I have great respect for Michael when he gives great advice such as avoid using headphones which I do believe.

@Michael Leigh hope you can be more considerate to others who have tried TRT which did not work for them and instead of saying to them that the reason that it didn’t work because they were too negative.

That’s all we are asking for as members of Tinnitus Talk to be more considerate to those who have tried TRT and did not work for them and not blaming them for not working for them cause they were negative.

Take care and I wish you well.
Lucifer.

 

You might think you had TRT but unless your treatment was as I described it wasn't. Therefore, I agree you were scammed. If you did have proper TRT (which I doubt) and you found it to be ineffective which is possible. More than likely, it was your negative thinking towards tinnitus and the belief that no treatment will work, instilled and reinforced in your mind, by the negative people that you associate with. Tinnitus is 90% mental I do not mean it's severity can be controlled by mere thought alone. The condition is intrinsically linked to our mental and emotional well-being and for this reason, it's important to have a positive and open mind. This cannot be achieved if one associates with negative thinking people at tinnitus forums.

Michael

 

What a perfect example of how TRT is being used to blame the patient. If it didn’t work you were just negative. How arrogant do you even have to be to suggest someone didn’t benefit from TRT because they were too negative? Quite abhorrent behavior.

 

Wow, yes, this is the exact issue.

TRT can and is useful for many, but not all. Few cures are a fit-all type, so stop pretending TRT is. Even better, stop blaming those who had no benefit from it. Yes, expectations and general mindset can play a role in how effective certain treatments are. If you believe something may work, you're more likely to notice the positive changes - but that's just basic psychology.

However, that doesn't mean this works for everyone. Even those with a positive mindset can find no benefit from TRT, and to blame them and their ''negative mindset'' is straight up victim blaming.

Also, why can't we still advocate for a cure? TRT isn't a cure, and we deserve one. If you wouldn't apply this to any other condition, why do so to tinnitus?

I'm happy for everyone who was helped by it, I hope I can be one of them should I seek out this kind of treatment (which exists in a different form in my country) but I will still advocate for a real cure.

 

(Even tone). How is that not a placebo? Do you know what a placebo is? The entire point of double blind studies is so that attitude doesn't influence the results. Literally, and I mean literally, the point of science is that something affects your body whether you want it to or not.

Any medical problem that is 90% based on optimism is not a serious medical problem.

Therefore, you are victim blaming. Many people who fail with TRT believed in it and stopped believing in it after it failed.

You are diametrically opposed to helping people. You basically are shilling for a placebo effect and want others to not influence that placebo. Therefore, you are saying these conditions aren't serious. TRT is a cult of confirmation bias and throwing out inconvenient results.

 

I've never tried TRT and probably won't unless it's a last resort. I have looked into its availability though and even had a conversation with Pawel J. Jastreboff. I just don't like the idea of having noise played into my ear for hours at a time. I would rather try various supplements like NR/NAD+ etc first.

I'm sure some people must get some type of benefit from TRT, even if it's only a placebo. But I really don't like the victim blaming stance of some of its proponents. Either it works or it doesn't... regardless of the presumed negativity of the patient.

Rock on regenerative medicine. Let's all hope for the best that it becomes a reality and is able to bring at least some of us some peace. Sooner rather than later, of course.

 

Michael I would like to add that victim bashing someone by telling them TRT is not working for them because their negative is NOT OK.

That is rude and completely unnecessary to say to someone.

@Michael Leigh I want you to understand some of the things you say really hurt to me and most of us here on this forum who also disagree with your statement.

TRT does not need positivity to work. If it works it works and if it doesn’t it doesn’t.

It’s just like when someone has cancer and needs chemotherapy. It may work for them or it may not. Whether your positive or negative does not affect whether chemotherapy will work for you or not.

Take care and I wish you well.
Lucifer.