Tinnitus Retraining Therapy

Edge is back!

 

@attheedgeofscience I just want to say that I read through a number of your posts here and also much of your own website just the other day. Really inspiring stuff - thank you for putting it out there.

 

@Michael Leigh - Michael I thought you were habituated? I am preparing to travel out of state for TRT partly because of your recommendation. What I see here is that you are still suffering. What is up man? Are you habituated or not?

 

don't try TRT. Avoid TRT like the plague. TRT is pseudoscience.

 

I see a different motive. I think that he is here because he has associations. Much what he says is good auditory sector and national healthcare advice. Unfortunately, TRT is promoted by such associations.

 

So anyone that tried true TRT and has had success is lying or would have habituated on their own? Is that what the deal is?

I am currently using Widex Evoke therapy on trial and I have found some substantial relief as it draws my mind from looking for my tinnitus all day. I am not masking as that the tones are set below my tinnitus level. I am having more good days now and occasional days I do not hear it at all unless I am meditating or in a silent room. Is there a reason that it is helping me or am I imagining it?

I have had tinnitus for three months now and it sucks but the sound therapy is helping me. My concern is that this may be as good as it gets but experiencing relief after just 2 weeks with them seems promising. It is either that or I sit on my hands and hope I habituate naturally because others who are against it or did not have success discouraged me?

What do you suggest I do?

 

Lol this is a great post. But obviously TRT didn't work out for me because I "didn't believe in it". Right!

 

TRT didn't work out for you because you never had no such thing. A day trip to London using your own words and having a pep-talk with so called tinnitus therapist is not TRT - neither is using white noise generators for the brief time that you did. Although I note you did have some benefit with them if memory serves me correctly.

This treatment has a two year duration and involves wearing white noise generators daily, using a sound machine at night and having regular counselling sessions with a Hearing Therapist or Audiologist that is trained in TRT and preferably has tinnitus. This way they will know how the condition affects a person's mental and emotional wellbeing. In addition to this positivity has to be reinforced by trying to help yourself. Visiting forums and associating with negative thinking people a person will never progress.

Michael

 

@UKBloke

You're missing something

 

“True TRT” isn’t real. It’s just a concept designed to blame patients who seek treatment and do not get a promising result. “If you got true TRT it would have worked, clearly what you had was not real TRT!” or “you were negative and gave up too early, you need to follow the protocol through to the end for it to work!” are common sentiments that blame the patient for the fact that TRT is not based in science and does not work.

See this study where it was found that people who had no sound therapy, people who had sound therapy with placebo audio and people who had Sound therapy with the magic TRT audio all had a similar level in tinnitus distress reduction over the course of 18 months: https://jamanetwork.com/journals/jamaotolaryngology/article-abstract/2734346

 

I thoroughly enjoyed Thunderbirds back in the day. The Hood, whom you've shown was quite a menacing and evil character, trying his best to sabotage the good efforts of International Rescue but always failed. Such an individual would be called a terrorist today. Unfortunately they don't make science fiction series like this anymore...

 

I remember this guy...

 

@MrCrybaby so you were not successful using TRT correct? What have you done to habituate?

 

Please do not listen to people that tell you TRT or CBT does not work because in most cases they do. They can be very helpful when administered correctly. If you correspond with negative thinking people such as those on this thread, some are placed on ignore so I no longer see their posts. Their thinking will become your thinking and you will not respond to any form of tinnitus treatment. If you do start a treatment I strongly advise you not to discus it in tinnitus forums. Once you do this you are opening up yourself to negative thinking people, that have never tried TRT or CBT and will do their best to convince you they don't work, and this can be detrimental to you responding positively to treatment and habituating to tinnitus.

To answer your question: Have I habituated to my tinnitus? I assure that I have. I have written over 7,000 messages in this forum. Please peruse some of them to see whether I have complained about my tinnitus being overly troublesome or asked for help with it. I am not above asking for help, but my reason for visiting this forum and others, is to try and help people primarily with Noise induced tinnitus as I was once helped many years ago. I do recall making reference to it being quite severe in my post: My experience with tinnitus. This was the period from 2008 to 2012 after a 2nd noise trauma that took 4 years to habituate for the second time. Although it improved after 2012 full recovery took longer. I will place a link below to the post.

The other time I commented on the severity of my tinnitus was in the opening paragraph of my article: Tinnitus, A Personal View. It took me months to write and the tinnitus was quite severe. I had never written anything of such length before and took a lot of concentration. In the process I gave up many times. Encouragement from friends enabled me to finish it. I was unable to read for 2 years after my second noise trauma and I have explained this in the link below. Please also read my post: The habituation process. This is what I believe true habituation means based on my experience with tinnitus, counselling and corresponding with people at tinnitus forums.

All the best
Michael

https://www.tinnitustalk.com/threads/my-experience-with-tinnitus.12076/
https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/
https://www.tinnitustalk.com/threads/the-habituation-process.20767/

 

For everyone stating that TRT is a scam please tell us your experience with it. Seems a lot of people are against TRT so please post your results. There should be a LOT of people to reply. I want to know your bad experience with it so I can decide what I should do. I do not want to hear from people who never tried TRT because their opinions have no use since they have not tried it.

 

You will find many people that say they have had TRT isn't TRT at all. Unless the treatment they have had is as I've indicated above it is not TRT. I have had TRT twice the full treatment and not a scaled down version of it. This is the reason I now what is involved.

 

@T Toledo OH

If you are thinking about trying TRT then I advise you to find a good therapist that will administer the treatment as I have mentioned above. This requires regular counselling and the wearing of white noise generators and using a sound machine at night. I also advise you to stop discussing the treatment with people in tinnitus forums. In fact keep away from them once you start TRT, CBT or another tinnitus treatment for reasons I have mentioned. Unless you do this success with tinnitus treatment is not likely to be good. Sorry to sound so sobering but you must keep away from negative thinking people.

I wish you well
Michael

 

@Michael Leigh yes the reason I am asking for feedback from members of Tinnitus Talk is I want to hear what others who are against TRT. It seems like a lot of people who never tried TRT are still against it for some reason. Strange to dispute something that they have no experience with.

 

If you are finding sound therapy is helping you then I would continue with it. There is quite a lot of evidence to suggest that some kind of sound therapy in the early months of tinnitus can help sufferers by distracting attention from the tinnitus sound.

This kind of sound therapy is quite different from TRT, which is extensive daily wearing of white noise generators and counselling which is aimed to change "negative" response to the sound of tinnitus. Personally, I did not find TRT or CBT helpful and would not recommend spending a lot of money on them (I didn't personally pay for them).

Instead, I would continue with the sound therapy and the other most important thing is to avoid loud noise exposure - avoid situations where you are likely to be exposed to loud noise and carry hearing protection with you when travelling. Continued loud noise exposure makes habituation much more difficult.

 

I’m not sure why you sound so perplexed? A forum member above you posted the reason - ie: an evidence based study showing that TRT makes no measurable difference in whether or not someone habituates.

People are calling it a “scam” because based off the available evidence it appears that if you habituate with TRT, chances are you would habituate without. Or vice versa. It isn’t a magical habituation device.

So it “works”, but it’s no better than how a placebo “works”.

However, I do understand how mental distress can feel all-consuming so if you aren’t worried about potential worsenings from in-ear maskers (yes, it can and has happened to people on this forum), and you have money to burn then going through a TRT regiment can make you feel like your doing something to treat this condition, which might make coping easier.

Whatever you decide I wish you well.

 

I personally did not try TRT because my doctor did not recommend it. I was told to avoid any loud noises and recommended to listen to nature sounds or classical music at a low volume to take the edge off and give me something else to listen to (other than eeeeeeeeeeeeeeeeee). I was told that while the damage is permanent my symptoms could still recover slowly over the coming months and years and I would have to wait to see how much it would improve.

I had burning pain in my ears and face when exposed to noise, everyday noises felt very loud, intense aural fullness, profound distress (pretty much suicidal), and my hearing was muffled. Over time (while avoiding loud noise, wearing earplugs when in environments I found uncomfortably loud, taking advil as needed for the pain, seeing a therapist for the stress of the whole situation) I have become used to the noise and my symptoms have improved. It took 3 months for things to become manageable, and after a further 3 months (I'm 6 months in) I'm mostly habituated. I keep the volume low when listening to music and have earplugs in my pocket whenever I'm out of the house (I war them on the train, when walking around downtown, etc).

I recommend looking into CBT to help manage your feelings if you are distressed, but otherwise just giving your ears the rest they need. Habituation happens naturally over time, with or without sound therapy.

 

I am aiming to see Gail Brenner in Philly soon. MRI showed a blocked sinus on right side (unfortunately my tinnitus is in left side so ENT said it probably is not the cause of my tinnitus). I will need to get surgery to fix that. I also have appointment with neurologist because there were some vascular and ischemic abnormalities on the MRI. Once I get all this taken care of and rule out any physical issue, I will have consultation with Gail Brenner and then travel to get set up with the generators.

 

I hear you @T Toledo OH

I advise you to think very carefully about what I have said. You are new to this forum and not aware of the negative bias that some members have towards TRT and CBT. This is mostly due to the expense these treatments cost and the results can very considerably. These people will paste website links to documents, written by people that I don't think, have any experience with tinnitus, TRT or CBT and call it studies. They are pleased to read these treatments don't work. Do not look to them for constructive advice because you won't get it. All you'll hear is TRT is a scam, snake-oil etc etc. This negativity will do you no good.

Quite a few people have visited this forum who have had success with TRT and CBT and spoken favourably of the treatments, much to the disquiet of certain members.

I have said my piece and wish you well.
Michael

 

Today Michael Leigh taught me that in order to assess the efficacy of different chemotherapy drugs, I have to have cancer myself.

Like come on dude. If you disagree with the TRT study then dissect it. Explain to us why their methodology is flawed, or how the study wasn’t constructed in a meaningful way. Not all studies are created equal, but if you are going to argue to the study has given us inaccurate data you have to explain why.

And no, saying the researcher doesn’t have tinnitus doesn’t count.

 

TRT is based on many misconceptions that are incredibly harmful to severe sufferers such as:

• everyone can learn to tune out their tinnitus
• tinnitus distress is purely due to someone's emotional reaction
• tinnitus loudness doesn't matter at all

Pawel Jastreboff, the creator of TRT, has literally said that:

• everyone but negative people or people on benzodiazepines benefit from TRT
• TRT is "good enough for tinnitus as a problem"

Jastreboff has openly mocked severe sufferers and has an ongoing bet with a researcher that we'll never find a cure for tinnitus.

Also, TRT might be harmful to some patients with pain-hyperacusis who could experience worsenings in their symptoms due to prolonged exposure to white-noise. Nonetheless, it's usually stated that TRT is completely safe. A Phase III trial showed TRT was no more effective than standard of care.

The discussion surrounding TRT and CBT is far more nuanced than certain members make it seem. Moreover, saying people who criticise TRT or CBT can't provide constructive advice is simply not true.

Spoiler

 

So you tried TRT and it did not help you? I could care less about the above. I want to hear from people who actually tried true TRT and found no help from it, or those that it helped. What people say who are against it or never tried it is meaningless to me or anyone else considering it.

 

Well stated, Autumnly.

What further utterly galls me is Michael Leigh's blithe aside in his endlessly orotund disquisitions that TRT can take over two years and cost in excess of $2,000.00 (as if we all should
have that kind of time, patience and discretionary income).

 

It's these things that bother me the most.

Everyone can tune out their tinnitus: I can't even tune out seeing my nose or the feeling of my clothes on my body. I have never been able to filter out random low background noise. Some people have certain sensory issues which makes this literally impossible.

Tinnitus loudness doesn't matter at all: Literally the biggest insult ever. I have a friend who hears their tinnitus in silence, on occasion, and doesn't hear it when they're busy with something. Mine is often audible over nearly everything. If I would only hear mine in complete silence, do you think it would really affect me this much?

TRT is ''good enough for tinnitus'' : A treatment that treats the emotional reaction rather than the actual problem is not good enough for ANYTHING. If it doesn't fully decrease the actual PHYSICAL issue, it isn't good enough. While I reckon that many can benefit from it in at least day-to-day life, it isn't the holy grail and it needs to stop being presented as such.

Mocking severe sufferers and proudly betting there won't be a cure is just being a bully. It was determined years ago that it's most likely a brain issue. Yes, we do not understand the brain well. I AM positive that eventually we will know how to effectively treat a lot of neurological issues - perhaps not a complete cure, but a way to lower the noise significantly should absolutely be possible, perhaps even within the next decade or so.

 

@Autumnly said "Further, he openly mocks sufferers, implies they could easily receive financial compensation for tinnitus which is why they don't want to get better."

Financial compensation right back at him and his players.
None of them have severe tinnitus and/or pain.