Tinnitus Retraining Therapy

So true.

I get a lot more sympathy when I mention that I suffer from cluster headaches than when I mention my tinnitus. But if I had to choose, I would keep the headaches rather than tinnitus , that's how bad this condition can be!

 

This.

There's a lot of things I've never been through or felt and yet when someone tells me about those struggles, I'm still completely sympathetic and feel for them. Why? Because I'm not an asshole, and I'm actually capable of imagining their pain/fears/suffering. You don't need to know the specific suffering in order to validate their experience, and the fact people don't get this is confusing to me.

Also, yeah, toxic positivity is an issue. Not everything in life is happy and good, we can't pretend negativity and bad experiences don't exist - especially when you didn't experience them as negative yourself. Your own view isn't the only valid one, which is why I say that I believe it's definitely worth seeking out for some people. If it helps people even a little, that's great, but don't pretend it helps everyone, and have sympathy for those who aren't helped by it.

 

No wonder why no one shows respect to Michael. Maybe if you stop saying these hurtful things to @Helheim and others maybe people will start respecting you.

I think it’s time for @Michael Leigh to be permanently banned from these forums if he continues to be rude and disrespectful.

I'm surprised @Markku and @Hazel are still continuing to put up with him and haven’t permanently banned him from these forums yet for victim bashing people. @Michael Leigh you have been more of a bloody poison in these forums than helpful.

99% of people in these forums would rather want you gone than to continue with your rude and disrespectful comments to people. I have had enough and sick of your disrespectful comments.

Please @Markku and @Hazel, consider this, we don’t need this type of poison in these forums.

 

Personally, I can't get behind a ban at all.

Think of it this way: we wouldn't be even having these discussions if we weren't arguing against the Jastreboff paradigm. This discussion has become a great outlet to allow others to use counter examples.

And more generally, in the history of mankind, I don't think censorship has never once squashed any idea.

In Michael Leigh's case, I also believe he firmly believes in his message and even though he has repeatedly called me "negative" for disagreeing with him as well, I definitely don't think anyone needs to be kicked off this forum. That's just too far in my view.

 

I think the freedom of expression on this forum is important and Michael should be allowed to stay. I disagree with a lot of what he says, as it is not supported by evidence, but we can’t decide what the correct opinions to have on tinnitus are.

I think to make a difference we the “negativity squad” can stand to take a page from Michael’s handbook. He compassionately reaches out to new members going through a scary time. What’s to stop us from doing the same thing and giving out science based recommendations to new sufferers? If you push something into the darkness it doesn’t just disappear.

Just my two cents. I don’t expect you to change your opinion

 

I also don't think banning people is the right thing to do. If needed, best just use the ignore button instead.

 

I am all for freedom of speech but continuing to bully people who had no success with TRT by saying the treatment didn’t work for them because they were too negative is NOT OKAY. This is straight up victim bashing and should not be tolerated in these forums.

@UKBloke
An ignore button can only do so much if he continues to be rude and disrespectful to others by bashing victims who did not have success with TRT saying the treatment did not work cause they were too negative.

I am standing up for those people who @Michael Leigh has shown a lack of empathy and disrespected when they did not have success with TRT by saying the reason why the treatment didn’t work is cause they were too negative.

There is no need for these rude comments to these victims.

 

Oh Mod's.... you know what time it is.

 

I think those who find conflict with others should consider if their own thoughts and actions ever have been counter reactive or hurtful to someone.

Tinnitus is real, reality of something gone wrong for those with having, but any comment or material can be too direct and bring realization of self examination.

When person A says to person B that you got hearing loss, or a physical problem - that will kick person's B limbic system. A bar to jump over is often placed with treatment ideas - it may be high - too high - and for a percentage there's no bar to try to jump.

How do we address tinnitus and physical pain without conscious and emotional interactions is a question of unknown reality. Reality can hurt.

 

Micheal knows better than Jastreboff...

 

I don't know whether you're being complimentary or being unkind......

I believe a lot of people that have problems with tinnitus and hyperacusis, if they were able to get treatment there is a chance their symptoms could improve....

Michael

 

As others have said, it's very simple. A treatment works whether you want it to or not. If that's not the case, then way too much of it is a placebo effect. To be fair, placebos are real things that give your body and mind a little bit of energy and feel-good chemicals. One of the reasons why studies try to control for placebos is because they are known to have a small influence on the results. I don't think placebos are bad things. They are just bad when one doesn't understand what they are.

I do not support a ban of @Michael Leigh. I think one of the reasons why so many people get angry at him is because he legitimately possesses certain advocacy skills, but often channels them incorrectly. As someone who wants to like as many people as possible on this forum, it's pretty frustrating honestly. I see so much potential in him, but it gets wasted as victim blaming sometimes.

I am more than happy to help newcomers to the forum. But I won't throw people under the bus to help them. They need to know the whole story of what tinnitus/hyperacusis is. The person who tried TRT and it made them worse? They need to know about this person.

Maybe this is harsh, but I sometimes see "success stories" that are like 2-3 weeks of tinnitus. Whenever I see those, I think about the impact that might have on the mental states of bad cases on this forum. The person with two weeks of tinnitus was never going to commit suicide, but there's a real concern for other members. It's frightening that the bad cases aren't prioritized in the scientific community.

 

As I have previously said: I have corresponded with a lot of people that say they have had TRT and it didn't work. That is fair enough. However, whenever I ask to please give details of what their treatment involved I realize it's not TRT at all. Like the person I was previously in correspondence with in this forum, that claimed he had TRT and said it was a scam. When I ask to please give details of his treatment he couldn't provide any information.

Michael

 

I hear what you're saying. I think people should consider trying TRT correctly, as I think there is something to the neural plasticity aspect to it. But where I disagree is that I don't think the principles are that profound. It's really not that sophisticated to engage in CBT and as much sound enrichment as possible.

I draw a line pretty quickly. If sound enrichment is causing you physical pain, stop. I am much more of a fan of gently recommending the principles of TRT (to see if they help). I maintain that anyone who isn't open minded to trying things probably doesn't have it that severely. If they get dismayed by some people on the forum bashing TRT, it probably isn't that effective of a treatment. If there was a treatment for my problem, I don't care if everyone on this forum is yelling at me and calling me a loser -- I would try it.

Just to give you an idea of what I'm talking about, I am currently undergoing the visual snow project's protocol. I don't have visual snow, but I have light sensitivity (and VS is correlated with tinnitus). This is how desperate the bad cases are. I realize you aren't bashing me, but I would imagine others are quite desperate as well.

Where I really draw a line is shelling out thousands on TRT-certified noise generators, while the person is unemployed from disability. This is nonsense, as one can try the principles of TRT for far cheaper to see what happens.

 

That's not how you're selling it to people who are new to tinnitus.

 

I appreciate your response but I'm not sure what you're referring to. I wasn't apologizing as much as clearing up a misunderstanding. What would I be apologizing for? Asking thoughtful questions?

You were "surprised to see this change?" What change?

I asked some questions, civilly and respectfully, in the pursuit of better understanding. Your response, calling me an “angry discontent,” and scolding me for a lack of manners and respect is not based in reality.

Michael - when I first arrived here, as I told you, I read your articles and was grateful for them. Again, I thank you for them. You have provided a wonderful resource.

Then, and I say this as someone who has nothing but gratitude, I was startled to see you lashing out at one person after the next without provocation. Ironically, you scold others for “lack of respect and manners” even as you’re the one displaying the lack of respect and manners.

Dr. Jekyll and Mr. Hyde – why is this lovely, helpful person saying such terrible things?

(Please know, I couldn't care less if someone is rude to me on the internet, but as someone who has been nothing but friendly with you in the forum, I figured I’d be candid in my response).

Again, I appreciate your links. No need to repost on my account - I've read them all.

Generally, I think your point is well taken, that if you reject treatments that might otherwise help, you're less likely to habituate.

However, I think there are groups that doesn’t take into account, and perhaps acknowledging them would diffuse some of the controversy, for example, people who are simply not reached by current treatments, or partially reached, but continue to suffer at debilitating levels. That's not negative thinking, that’s biology.

And I'm not sure how engaging with them prevents habituation. In the Lenire thread, for example, there's keen interest to know how many people the device helped, didn’t help, or hurt. The people who weren’t helped aren't dismissed as negative thinkers. If anything, their experience is valued, and no one would suggest that engaging with them undermines one's own potential to get a positive result.

I understand that this is the internet and everything should be taken with a grain of salt – as the New Yorker put it best in 1993, on the internet, nobody knows you’re a dog – but isn’t engaging with others, learning from shared experiences, and reexamining our assumptions and beliefs as we sift through good and not so good treatments, exactly what the forum is for? Isn't a place where one can exchange ideas and views the very definition of "forum?"



Also, to suggest that engaging with people who have different opinions (or are genuinely negative) will poison my progress implies that I’m unable to think for myself. Again, the beauty of the forum is that we're able to interact with all sorts of people with all sorts of experience, but I’m not necessarily going to emulate some random person on the internet just because I engage with them. For all I know, they're a dog.

Nonetheless, I appreciate your feedback, and appreciate learning of your positive experience with TRT. However, one thing you mentioned gives me pause. The 2nd time you underwent TRT you said it took 4 years. That sounds grueling, and I wonder, given its duration, how do you know it's TRT and not the simple passing of time that provided relief?

Again, I think you make a reasonable point in encouraging people to embrace current treatments that improve quality of life. But it sounds like, while you do say there's nothing wrong with hoping for a cure, you also seem to suggest that anything more than casually hoping for it is counterproductive.

I'm not sure I agree with that, and I guess that's what my previous questions were really about.

One could argue that "harpering on about a cure" is exactly what expedited cures and treatments for other vexing medical conditions in the past. And given the innovations that finally seem to be emerging for tinnitus, I wonder if harpering on about them might very well accelerate their development?

Thus, embrace the very best treatments available today; hope for, work for, a cure tomorrow. No?

Thank you. I hope so, and I appreciate your optimism.

I am currently doing everything I can possibly do to improve (including sound enrichment), ruling nothing out that makes sense to me and seems safe, and trying to learn and do as much as I can to maximize whatever recovery is possible.

All best,

Jack

 

I don't know what to think. I read the studies. They concluded that trt and "standard of care treatment" provide benefits but TRT seems to be more efficient in reducing THI score.
Well, if you have the money and don't have hyperacusis, maybe this is something to consider. To be honest, I'm considering TRT even though there is no practitioner in my country.
There is no cure yet after all, We will have to wait 5 years , maybe more for a real treatment. Until there is a cure, we have no other choice than to cope.

 

I do believe TRT provides more benefits to tinnitus patients than hyperacusis patients but it does not always work for everyone.

I don’t think having counselling or not affects whether the TRT treatment will help with tinnitus or hyperacusis. A treatment does not need positivity and counselling for the TRT treatment to work.

 

There is no cure for tinnitus at the moment. However, many people can and do habituate to tinnitus and able to carry on with their life doing most of the things that they want to. Medication, sound therapy and counselling can help a lot of people with tinnitus and are incorporated into therapies such as TRT, CBT , counselling and Mindfullness. See what is treatments are available to you. They are not cures but can often help in coping better with this condition.

Michael

 

Exactly.

 

@HeavyMantra

Although you found my question to the member concerned about TRT humorous, it is quite a serious matter. The member said he had TRT and it was a scam and I accepted this. When I asked what his treatment entailed he was unable to answer.

I hope you are still enjoying the sound of the ProAcs? I certainly am listening to them at the moment.

Michael

 

This is much more reasonable but usually you write stuff like this:

 

You're a funny guy "Michael"

Yes, I enjoy the sound very much. However since I got them I have developed ear pain (not pain hyperacusis) and a new tone (50 Hz, intermittent). It gives me pause. I have played them moderately loud on a few occasions but mostly very quiet. Maybe it's not about volume.

I still don't know if I should just sell everything music related and cut that part out of my life completely. If I knew my new problems were caused by the speakers, I would sell.. But there are so many possible reasons.

 

On a serious note, I am fully aware some people will not respond to certain tinnitus treatments by this I mean treatment as a therapy to enable them to have a better quality of life and not "treatment" as a cure for tinnitus. When someone says they have had TRT, they need to back this up with facts. I say again and appreciate that if one has TRT the full treatment and haven't had any success with it that's fair enough. I have had TRT the full treatment and know what it involves. Therefore when corresponding with someone I can usually tell if they have had proper TRT or not.

I am sorry to hear of the pain that you have developed. I was in a similar position twice in fact. When I first developed tinnitus with severe hyperacusis back in 1996. Listening to my HI-FI as low as 40db caused discomfort. I remember this vividly as I bought a sound level meter and measured the sound level from my seated position. I boxed up the HI-FI for two years until I have finished TRT.

In 2008 after my 2nd noise trauma a similar thing occurred but without hyperacusis. I packed up the HI-FI and bought a Bose Wave music system. If you know about the Bose wave, it's like listening to good HI-FI system on a smaller scale. It served me very well for 2 years and still use it occasionally when I haven't got a lot time to power-up my valve amplifier and listen to my ProAc ref 8 signatures. I am listening to them as I write and the system is singing beautifully - the sound is so silky smooth and warm thanks to the valves, without a hint of harshness or sibilance in the midrange and treble...

If you can please don't sell your HI-FI as you might regret it I'm glad I didn't. If possible try and seek help with an Audiologist, that specialises in tinnitus and hyperacusis. I know you listen at nearfield and this could be the reason for causing irritation to your ears. Give them a rest as things might settle down. I know how disheartening it is when you can't listen to your music as I am an Audiophile but don't give up hope. I was at the end of my tether in 2010 and had some difficult moments when I thought my life wouldn't turn around but it did, even though it took 4 years in total.

Try and seek help if you can.
Best of luck

Michael

 

It's all pretty simple:

• If it makes you worse, do not do it.
• If it doesn't help, but doesn't make you worse, try the basic principles of it for a long time, maybe even periodically.
• If it does help, either the care, time, or placebo is helping. Either way, keep going.
• The longer it takes to work, the greater the volatility of what you can attribute the progress to.

 

This is the textbook definition of a placebo.

@Michael Leigh : I have a sincere question for you because I'm trying to understand your views better (I'm pulling for you).

Let's say I have severe tinnitus, I come on these forums, and get told by everyone that TRT is ineffective. But I'm desperate so I force myself to try it anyways. I have regular therapy sessions which I don't believe in (but I give them an honest try by engaging in CBT), and I constantly have noise enrichment below the level of tinnitus. After 6-12 months, I start to really improve and start talking about how helpful TRT was, despite being skeptical of it.

Would you be willing to shoot that person down and insist that TRT wasn't the reason they improved since they didn't have a positive attitude? If the answer is no, then we are just working with a placebo here.

 

Since you are trying to understand my views better, please note the following: I believe it is important to have a positive mental attitude towards tinnitus and life in able to habituate to it long term. For some people this takes time and is not achieved overnight. I also believe it's necessary to have a positive attitude when engaging in any tinnitus treatment or at least have an open mind to it. If one has the belief a particular treatment will not help, then they have convinced themselves the treatment will not be successful from the outset and therefore they are doomed.
That is all I am prepared to say on this particular issue.

Take care and I wish you well.
Michael

 

With respect, I'm talking specifically about treatments helping whether someone wants them to or not. If you think positivity is an important aspect of TRT, then fair is fair. What I'm suggesting is consistency. If you say someone didn't get treated because they weren't positive about it, you also have to say they didn't get treated when they write a story about being pleasantly surprised.

In fact, in the very story that Lane shared from the CFS forum, here is what the OP said:

Notice, the OP says "I thought there was no chance it would work, but I had to give it a shot, and it WORKED." This is specifically what I'm talking about. You can't have it both ways.

To be clear, I'm not trying to knock the person who had success with TRT; they obviously believe it's a real treatment, and for them, maybe it was. I'm happy for them. But by your own viewpoints, that person cannot attribute the success to TRT since they didn't believe in it at first.

What I'm suggesting is that next time you shoot someone down on here for "not believing in it," you also shoot down the wild success story where the person didn't believe in it. If you can't do the latter, then you don't really believe attitude influences the treatment. Or you're just cherry picking results to support TRT. All are bad in the business of finding real treatments.

In summary, I am infinitely more concerned about attitude influencing the results than people who claim TRT can help. I actually believe TRT may have value for a select group. But I think the reasons why it helps and doesn't help are scientific in nature.

 

That's just not the case for everyone, there are people who didn't think treatments would help them, such as TRT or CBT, but then they did benefit from them. Many people also aren't as one-sided as that, a part of them might be sceptical of a certain treatment whereas another part might be open to it.

Also, that's a really convenient way to paint everyone that didn't benefit from a certain treatment as a non-believer, implying they weren't truly open to the treatment.

You also didn't answer the question but you said: "When someone says they have had TRT, they need to back this up with facts." So other people have to answer you but you don't have to.

 

I thought everyone knew already that TRT is a scam...