Tinnitus Retraining Therapy Is Ineffective, Latest Study Finds

[Agrajag364]

Science has nothing to do with habituating to tinnitus and its treatment.

 

[Ken219]

They used the word 'science' in the trial.

'The safety and scientific validity of this study is the responsibility of the study sponsor ... The primary purpose of the Tinnitus Retraining Therapy Trial'

 

[DaveFromChicago]

In regard to Michael Leigh's commentary:

The huge flaw in the example of learning to ignore the sounds from "a busy train station or motorway" is that these are still external, avoidable and can be silenced.

Everyone has commented on how quite different tinnitus is: it is so demoralizing to have this permanent, constant internal sound with no method of silencing it.

In fact, in Dr. Rauschecker's TED Talk he said that one of the worst aspects is that "you can't run away from it."

 

[Michael Leigh]

In regard to Michael Leigh's commentary:

My posts and articles are based on personal experience living with tinnitus for 23 years. Corresponding and counselling people with tinnitus. I assure you there is no flaw in anything that I have written.

In fact, in Dr. Rauschecker's TED Talk he said that one of the worst aspects is that "you can't run away from it."

Indeed, one might not be able to run from tinnitus but most people learn to habituate to it and carry on with their life doing everything that they want to do.

The fact that you are posting in this forum is proof that at the time your tinnitus was not severely debilitating. If it was you wouldn't even feel like turning on your computer and logging into Tinnitus Talk. If you work and can do all the necessary tasks that most people do in order to live, then your tinnitus is not debilitating. Granted, it may be intrusive at times you are still able to go about doing your daily affairs. If you are not taking any form of medication: sleeping draft, clonazepam or using devices such as white noise generators, or under the care of an Hearing Therapist or Audiologist, this is another indication your tinnitus isn't severe and therefore, be thankful and try to be a little more positive instead of allowing yourself to be so negative.

I have said my piece and good day to you

Michael

 

[Markku]

The fact that you are posting in this forum is proof that at the time your tinnitus was not severely debilitating. If it was you wouldn't even feel like turning on your computer and logging into Tinnitus Talk.

I understand some members can find it frustrating how you consider your experience to be more correct than scientific studies - or the experiences of those who have not had tinnitus for 23 years.

I would also like to state that your generalization of people's tinnitus not being debilitating if they can log onto Tinnitus Talk and talk about their problems, is blatantly wrong. It might be YOUR experience, but not necessarily that of others.

We have unfortunately had several members over the years log on here, talk about their tinnitus, and then take their own lives.

If taking their own lives is not proof that they were debilitated, I do not know what else is.

Please try to understand that your opinion and experience can be utterly different from someone else.

 

[Agrajag364]

My posts and articles are based on personal experience living with tinnitus for 23 years. Corresponding and counselling people with tinnitus. I assure you there is no flaw in anything that I have written.

Indeed, one might not be able to run from tinnitus but most people learn to habituate to it and carry on with their life doing everything that they want to do.

The fact that you are posting in this forum is proof that at the time your tinnitus was not severely debilitating. If it was you wouldn't even feel like turning on your computer and logging into Tinnitus Talk. If you work and can do all the necessary tasks that most people do in order to live, then your tinnitus is not debilitating. Granted, it may be intrusive at times you are still able to go about doing your daily affairs. If you are not taking any form of medication: sleeping draft, clonazepam or using devices such as white noise generators, or under the care of an Hearing Therapist or Audiologist, this is another indication your tinnitus isn't severe and therefore, be thankful and try to be a little more positive instead of allowing yourself to be so negative.

I have said my piece and good day to you.

Michael

 

[Michael Leigh]

I understand some members can find it frustrating how you consider your experience to be more correct than scientific studies - or the experiences of those who have not had tinnitus for 23 years.

I would also like to state that your generalization of people's tinnitus not being debilitating if they can log onto Tinnitus Talk and talk about their problems, is blatantly wrong. It might be YOUR experience, but not necessarily that of others.

We have unfortunately had several members over the years log on here, talk about their tinnitus, and then take their own lives.

If taking their own lives is not proof that they were debilitated, I do not know what else is.

Please try to understand that your opinion and experience can be utterly different from someone else.

Providing I am not breaching any of Tinnitus Talk rules I stand by what I previously stated to @DaveFromChicago who said my commentary was flawed.

Good day to you.
Michael

 

[TheDanishGirl]

I understand some members can find it frustrating how you consider your experience to be more correct than scientific studies - or the experiences of those who have not had tinnitus for 23 years.

I would also like to state that your generalization of people's tinnitus not being debilitating if they can log onto Tinnitus Talk and talk about their problems, is blatantly wrong. It might be YOUR experience, but not necessarily that of others.

We have unfortunately had several members over the years log on here, talk about their tinnitus, and then take their own lives.

If taking their own lives is not proof that they were debilitated, I do not know what else is.

Please try to understand that your opinion and experience can be utterly different from someone else.

Thank you! Finally a voice of reason.

 

[Starthrower]

The fact that you are posting in this forum is proof that at the time your tinnitus was not severely debilitating. If it was you wouldn't even feel like turning on your computer and logging into TT. If you work and can do all the necessary tasks that most people do in order to live, then your tinnitus is not debilitating. Granted, it may be intrusive at times you are still able to go about doing your daily affairs. If you are not taking any form of medication: sleeping draft, clonazepam or using devices such as white noise generators, or under the care of an Hearing Therapist or Audiologist, this is another indication your tinnitus isn't severe and therefore, be thankful and try to be a little more positive instead of allowing yourself to be so negative.

Oh please Don't Make Me Take My Ear Rings Off (Gretchen Wilson song).

Stop judging people's tinnitus severity and ethics and personal experiences. I would tag your name but you have me blocked and I already cussed you out previously for doing so to woman by using age discrimination referring to her being older. Not gonna ride with me at all.

Thank you @annV for the scientific study you provided on page one.

 

[DaveFromChicago]

With all due respect, I have been analyzing all sorts of websites on tinnitus ever since I got this condition on 01/2014 and I have encountered so many tragic, heartbreaking notices of suicides that I eventually lost count. This includes reporters' articles from interviews with the ATA, personal stories on all sorts of YouTube sites, reports from the British News Media, and most tellingly the number of sufferers who once posted on this forum who were never heard from again (or who we learned about for a fact).

Let's not forget the consequential pathologies from this condition such as alcoholism, drug addiction, divorce, incapacitation that led to lifelong reclusiveness, domestic and other forms of violence, lives generally ruined that led to homelessness, and misdiagnoses that led to treatments for unrelated mental illnesses.

 

[david c]

I'm enrolled with TRT on the NHS, and I have seen two therapists.

- Both said not to use sound enrichment as it would make the Tinnitus worse, and that I had to listen to the Tinnitus to get used to it.
- Both said the use of WNGs is no longer recommended, and I had to insist before they would prescribe them.
- Both can only see me once every two months for an hour.

I want TRT to work - we all want it to work I'm sure! - but unless I've been really unfortunate in my area, the TRT provided on the NHS is quite terrible. I wonder if it's changed quite a bit since you had it Michael? Because they seem to be offering quite different advice to the advice you received, and getting regular appointments is an impossibility.

I'm considering going private to see if that is better but I can't really afford it, and it would be a complete waste of money if it was the same as on the NHS.

This is interesting as it is recent evidence for what is going on in the NHS which is a definite move from TRT (counselling + sound therapy) to CBT (counselling only).

Why has that happened? One word: Money. Cutting out the sound therapy aspect (providing patients with "free" white noise generator) saves the NHS large amounts of money. And of course the demand for audiologists means your experience of seeing a hearing therapist once every two months is pretty standard.

I should stress I am not particularly advocating for or against either CBT or TRT. I didn't find white noise generators particularly helpful myself but I think using some kind of sound therapy - like a sound machine or app can help at least provide some sufferers with a bit of distraction from the sound. I think both therapies will probably help some sufferers to some degree and many sufferers not at all - and unfortunately that's about standard for tinnitus therapies.

 

[Michael Leigh]

Why has that happened? One word: Money. Cutting out the sound therapy aspect (providing patients with "free" white noise generator) saves the NHS large amounts of money. And of course the demand for audiologists means your experience of seeing a hearing therapist once every two months is pretty standard.

I fully agree with you @david c and could hardly believe when @Tanni explained what her two therapists told her, about sound therapy making tinnitus worse. Sound enrichment helps particularly when white noise generators are used. They will treat the tinnitus and hyperacusis if present by helping to desensitize the auditory system due to noise trauma. The hospital I attend I haven't had a problem getting replacement white noise generators, when one or two have stopped working and hope this continues.

Michael

 

[Starthrower]

With all due respect, I have been analyzing all sorts of websites on tinnitus ever since I got this condition on 01/2014 and I have encountered so many tragic, heartbreaking notices of suicides that I eventually lost count. This includes reporters' articles from interviews with the ATA, personal stories on all sorts of YouTube sites, reports from the British News Media, and most tellingly the number of sufferers who once posted on this forum who were never heard from again (or who we learned about for a fact).

@DaveFromChicago I have a question. In the above you mention the tragic cases. Are you at all encouraged from those of us with severe tinnitus/hyperacusis that have been able to be here on earth living life as well as possible?

You see I have it really bad. For example each and every night going to sleep is a process I conquered. However, each and every morning I awaken to screeching brain noise at 4:30 am. In the first few years it really took me down. Now, I just get up and start my mornings. Once in a while I feel like screaming and crying and kicking and hitting my head against a wall it gets so... ugg.

There are some of us like @Jazzer who suffer terribly but somehow we just get on with life as well as possible.
So there is always hope that despite this agony - there are ways to be okay.

I so remember back in 2002 getting so pissed off on a support board (way before Tinnitus Talk) because members would say it wasn't a big deal that one would get used to it and blah blah blah. The ones who helped me the most were those that listened and would write simply that they understood.

I don't know why I am rambling on here...

 

[Daniel Lion]

@DaveFromChicago I have a question. In the above you mention the tragic cases. Are you at all encouraged from those of us with severe tinnitus/hyperacusis that have been able to be here on earth living life as well as possible?

You see I have it really bad. For example each and every night going to sleep is a process I conquered. However, each and every morning I awaken to screeching brain noise at 4:30 am. In the first few years it really took me down. Now, I just get up and start my mornings. Once in a while I feel like screaming and crying and kicking and hitting my head against a wall it gets so... ugg.

There are some of us like @Jazzer who suffer terribly but somehow we just get on with life as well as possible.
So there is always hope that despite this agony - there are ways to be okay.

I so remember back in 2002 getting so pissed off on a support board (way before Tinnitus Talk) because members would say it wasn't a big deal that one would get used to it and blah blah blah. The ones who helped me the most were those that listened and would write simply that they understood.

I don't know why I am rambling on here...

You're not rambling,

You're stating the truth for a lot of us, including myself, with a debilitating condition.

Debilitating as in, not easy to function like before... and is just bloody hard, to put it mildly and understate the daily challenge.

Your words often help me... so, thank you.

Daniel

 

[jay777]

living with tinnitus for 23 years. Corresponding and counselling people with tinnitus.

After 23 years and you still do not GET IT.

 

[Michael Leigh]

After 23 years and you still do not GET IT.

You have had tinnitus all of 5 mins and all you have to contribute is disrespect and impertinence.

 

[jay777]

You have had tinnitus all of 5 mins and all you have to contribute is disrespect and impertinence.

With my 5 minutes of tinnitus + hyperacusis I GET IT.

Disrespect and impertinence = NOT AGREEING WITH YOU.

 

[EDDTEKK]

We need a real treatment and not pseudoscience TRT which perhaps in some cases helps the very mild sufferers.

When will the researchers find an effective working treatment?
Maybe they will never find one.

All the doctors and therapists can propose is psychological support.

I know a person who took his life due to suffering for 2 years from severe tinnitus. He underwent TRT in a clinic but it was absolutely of no help to treat the symptom.

I also suffer severely and did TRT myself and I know all the details and background. But it doesn't help me either. I think every day of killing myself because it's not getting better and the ringing is so damn loud.

I hope Lenire will do something and really treat tinnitus and its loudness. If not I don't know how long I can endure this situation and survive. Tinnitus ruined my life for sure. It's a nightmare which never ends.

 

[david c]

One thing I think is important when judging TRT or any other tinnitus therapy is the perspective of the person receiving the therapy.

If you get a therapy completely free and it helps you even a little bit you might be inclined to be well-disposed to that therapy. If on the other hand you paid several thousand pounds/dollars/euros for that therapy and its effect is very limited your perspective is likely to be much less positive.

Michael Leigh got TRT completely free on the NHS quite some time ago (as @Tanni has confirmed you wouldn't get that on the NHS today) and he says that it did help him so it isn't surprising that he feels positive about it. Other people on the other hand paid a lot of money for it and didn't find it so helpful and it isn't surprising that their attitude towards it is hostile.

This also has relevance to Lenire. What we have to remember is that all the people who have reported on it so far got it completely free as part of a clinical trial. They have mostly reported reasonable to good results with it, but we have to remember that their perspective is going to be that if you get something completely free and it helps you even a little bit you are likely to feel positive about it. The real test of Lenire will be when it is released to the paying public and we get the perspective of those who have paid thousands for it - their attitude is likely to be less forgiving.

 

[Jab4]

One thing I think is important when judging TRT or any other tinnitus therapy is the perspective of the person receiving the therapy.

If you get a therapy completely free and it helps you even a little bit you might be inclined to be well-disposed to that therapy. If on the other hand you paid several thousand pounds/dollars/euros for that therapy and its effect is very limited your perspective is likely to be much less positive.

Michael Leigh got TRT completely free on the NHS quite some time ago (as @Tanni has confirmed you wouldn't get that on the NHS today) and he says that it did help him so it isn't surprising that he feels positive about it. Other people on the other hand paid a lot of money for it and didn't find it so helpful and it isn't surprising that their attitude towards it is hostile.

This also has relevance to Lenire. What we have to remember is that all the people who have reported on it so far got it completely free as part of a clinical trial. They have mostly reported reasonable to good results with it, but we have to remember that their perspective is going to be that if you get something completely free and it helps you even a little bit you are likely to feel positive about it. The real test of Lenire will be when it is released to the paying public and we get the perspective of those who have paid thousands for it - their attitude is likely to be less forgiving.

Hey if they give me 4000 dollars and the treatment... I know my tinnitus will be cured 100 percent.

 

[Starthrower]

Your words often help me... so, thank you.

@Daniel Lion your words mean a lot to me.

 

[Telis]

Who are these TRT folks? They pop out of the woodwork, it's like they all have a built in alarm system as soon as the topic of TRT comes up.

I don't think anyone buys that these people are trying to help (unless that help involves the eventual promotion of TRT). These creeps seem to be willing to cut down and silence even the worst tinnitus suffers if they don't conform/believe, or even worse TRT didn't work out for them!!

These TRT promoters obviously aren't here because they care. They are here to hammer sell TRT every day (full time) until they die.

I've been here for over 5 years, from what I gather the general consensus has always been that TRT is unhelpful, now we have more evidence that confirms this, yet these same folks are at it again doing damage control as usual. Who pays these people?

 

[Adam0309]

Glad to see the standard of published research increasing. Most papers out there report positive results when they are clearly not true, with our (sufferers) existence being the proof. So I'm glad to see some honest research for once. That's a step in the right direction.

Second, I think the main take away is that being panicked leads to higher THIs. So any treatment that stops you panicking, whether it's TRT, some counselling or even just time, causes THIs to go down. Therefore, improved THIs do not imply a theory is correct. In this case, we finally see that Jastreboff and Hazell's theory is probably not true, even though TRT has helped people.

 

[Jazzer]

I understand some members can find it frustrating how you consider your experience to be more correct than scientific studies - or the experiences of those who have not had tinnitus for 23 years.

I would also like to state that your generalization of people's tinnitus not being debilitating if they can log onto Tinnitus Talk and talk about their problems, is blatantly wrong. It might be YOUR experience, but not necessarily that of others.

We have unfortunately had several members over the years log on here, talk about their tinnitus, and then take their own lives.

If taking their own lives is not proof that they were debilitated, I do not know what else is.

Please try to understand that your opinion and experience can be utterly different from someone else.

Well said Markku.

Will members ever come to realise that generalisations with regard to tinnitus cannot be substantiated and are ludicrous.

 

[Jazzer]

You see I have it really bad. For example each and every night going to sleep is a process I conquered. However, each and every morning I awaken to screeching brain noise at 4:30 am. In the first few years it really took me down. Now, I just get up and start my mornings. Once in a while I feel like screaming and crying and kicking and hitting my head against a wall it gets so... ugg.

Dear Star - I appreciate you so much with the integrity and honesty you show by being prepared to open up about your severity and mine.
I know exactly where you are.

Will members ever realise that the diversity in degrees of suffering is so wide.

I 'get it in the neck' from otherwise nice people, who criticise me endlessly for objecting to their 'sweetness and light' cosy platitudes.

Get real folks!
Tinnitus can and does KILL.

However, many of us, even at a severe level, have managed to find ways to cope, and carry on with our lives.
This support group would operate so much better if everybody would only accept that the severity aspect is so diverse, and that generalisations should be abolished!

Star - if I only had a magic wand, you and I and everybody else on here would be cured in a second.
(Perhaps I'll get one for my birthday ??)

Love
Dave x
Jazzer

 

[Jazzer]

Indeed, one might not be able to run from tinnitus but most people learn to habituate to it and carry on with their life doing everything that they want to do.

"TOTAL NONSENSE !!!!!"

 

[Jazzer]

@Michael Leigh

Where did you get your information that most people learn to habituate to it and carry on with their life doing everything they want to?

Did you manage to get hold of some nationwide statistics perhaps?

I'd love to see them.

 

[Starthrower]

However, many of us, even at a severe level, have managed to find ways to cope, and carry on with our lives.

@Jazzer thank you. It isn't easy being reminded of "those" days and having "doctors" or others saying oh you will get used to it and so on.

It was (is) something that I had to do myself.

 

[Michael Leigh]

@Michael Leigh

Where did you get your information that most people learn to habituate to it and carry on with their life doing everything they want to?

Did you manage to get hold of some nationwide statistics perhaps?

I'd love to see them.

There was a time I found corresponding with you quite delightful but unfortunately that has changed.

I wish you well Jazzer.
Michael

 

[Jazzer]

There was a time I found corresponding with you quite delightful but unfortunately that has changed.

I wish you well Jazzer.
Michael

I wish you well too Michael,
just can't agree with your findings.
By the way - disagreement is not a bad thing,

Jazzer