Tinnitus Retraining Therapy

[lymebite]

Does TRT require one to purchase or rent expensive in ear devices?

No, it does not, accordingly to what I was told by Pawel Jastreboff.

I did TRT under the care of Pawel Jastreboff who invented TRT. He said I could use Apple earbuds, or a white noise machine, or anything really, instead of the special devices. He said the expensive ear level sound generators would enable quicker results but he said he could treat me just fine with TRT without them.

 

[threefirefour]

No, it does not, accordingly to what I was told by Pawel Jastreboff.

I did TRT under the care of Pawel Jastreboff who invented TRT. He said I could use Apple earbuds, or a white noise machine, or anything really, instead of the special devices. He said the expensive ear level sound generators would enable quicker results but he said he could treat me just fine with TRT without them.

This is very bad information given that these do further damage to people's hearing.

 

[Contrast]

No, it does not, accordingly to what I was told by Pawel Jastreboff.

I did TRT under the care of Pawel Jastreboff who invented TRT. He said I could use Apple earbuds, or a white noise machine, or anything really, instead of the special devices. He said the expensive ear level sound generators would enable quicker results but he said he could treat me just fine with TRT without them.

Thank you for informing me. So the price does drop significantly without them?

The whole idea is from the 1990's to the mid-late 2000's people did not have ear buds and usually bought the irrelevant devices. During that time people were in a way scammed.

 

[lymebite]

So the price does drop significantly without them?

When I did TRT with Dr. Jastreboff each part of the cost was a separate line item (various hearing tests, appointments, etc.). The ear level sound generators were $1,600 for the pair. Dr. Jastreboff said that was his cost, he just passed it along with no profit margin added, so he had no financial incentive whether I chose to purchase them or not.

So in my case TRT would have been $1,600 less expensive if I did not purchase the ear level sound generators.

The whole idea is from the 1990's to the mid-late 2000's people did not have ear buds and usually bought the irrelevant devices.

At one appointment I had with him, Dr. Jastreboff pointed at my iPhone and said "look! You can just use that. You don't need anything special now that devices like that exist. You can get the sound for TRT anywhere with your iPhone."

 

[Michael Leigh]

At one appointment I had with him, Dr. Jastreboff pointed at my iPhone and said "look! You can just use that. You don't need anything special now that devices like that exist. You can get the sound for TRT anywhere with your iPhone."

White noise generators are expensive but worth it as they can help tinnitus and often treat and improve hyperacusis. In my case the hyperacusis was completely cured using them. Trying to do this on the cheap by using headphones, earbuds is not a good idea in my opinion. These devices are crude compared to white noise generators that are made for the purpose of treating tinnitus and hyperacusis.

Michael

 

[just1morething]

@lymebite, how long ago was your TRT treatment done? Was it of some benefit to you?

 

[Gman]

The whole idea is from the 1990's to the mid-late 2000's people did not have ear buds and usually bought the irrelevant devices. During that time people were in a way scammed.

Um people had ear buds in the 90s and 2000s, very common. Discman's and then mp3 players were widespread. I guess though nowadays almost everyone is connected to earbuds and headphones now with smart devices.
Does anyone know if there's a graph showing prevalence of tinnitus over the past decades? I bet the rate across all age groups is increasing thanks to all the phone/tablet manufacturers

 

[lymebite]

@lymebite, how long ago was your TRT treatment done? Was it of some benefit to you?

I did it in 2015. No, did not help at all, actually went in the other direction, so in hindsight I regret trying it.

 

[linearb]

At one appointment I had with him, Dr. Jastreboff pointed at my iPhone and said "look! You can just use that. You don't need anything special now that devices like that exist. You can get the sound for TRT anywhere with your iPhone."

this makes him sound a lot more woke and less in it for the benjamins than the shitton of clinics that sell "TRT" by which they mean "ear level generators plus a referral for generic CBT"

whatever you can say about TRT, what I just described isn't it. The fact that Jastreboff didn't think the source of the noise was significant compared to the rest of the protocol, speaks volumes compared to "tinnitus clinics" here that sell ear-level generators for $5000+

if he was honest about his pricing, and there's no reason to think he wasn't if he was really not steering you towards buying them -- implies a ~40-50% profit margin on the gear for the clinics here, which is in line with what you expect from retail commodities, but it's a depressing thought because it means the existence of those clinics is likely predicated on some number of sales, and so even if they are employing good, compassionate audiologists, they have an existential incentive to sell overpriced earbuds.

 

[Contrast]

If you are in a country where TRT is free, go for it.

Free as in the Government is forced to fund regressive options.

Taxes should be going towards medical research on tinnitus or any disease.

 

[bobvann]

I agree. I have had the same experience with the local snake oilists clinics. They only want to sell you 4 to 6 thousand dollar hearing aids.

When I did try one that I describe more in detail in my introduction post, the Widex made my head scream overnight and became unbearable to wear by the following day.

When I returned them since there was a trial, the Audiologist wrote I did not give it a chance that 82% of people get better blah blah blah that she could not help me.

I have seen programmable hearing aids on eBay for as low and 300 and something dollars. U.S. I have tried ear buds too which never did much.

What a racket! When you spend x amount on a TV or luxury automobile, you get a certain quality product. Spend thousands on this and if nothing works, too bad, so sad, or possibly make it worse, no one is held accountable.

 

[Christopher805]

I'm currently undergoing TRT. It's been approximately 6 months. I have tinnitus and hyperacusis. I have the best TRT clinician in the field. My experience has been a roller coaster. The White Noise Generators (WNG) are challenging to say the least. If you are not ready to one stick a rigid plastic tube deep in you ear canal, listen to unpleasant broadband noise for 8 hours a day, hear additional strange sounds with them on, hear unbearable sounds after taking them off, being encouraged to increase the volume periodically, feeling it's making ears worse, feeling as if you are in a bubble, and more than do not do it. But if you can handle this by all means give it try. Being totally honest. God Bless. Peace.

 

[MRItechssuck]

And... have you noticed any improvement?

 

[Contrast]

You are not clear is TRT helping you?

Also is your hyperacusis "ear pain" or noises sounding abnormally loud, or Both?

 

[Christopher805]

That's a very good question. A small percentage of the time yes. But for a very large percentage NO!!! Initially my hyperacusis was annoyance now it gravitated to pain. Did TRT make it worse? I do not know. I read post where people talk about TRT but have never done it. Others talk about undergoing TRT but I doubt they really did true TRT. Well I can tell you this I am doing it and with the best clinician. It is not a walk in the park. Trust me. No make believe here. You get a true assessment. If I had to do it all over again I would have tried to habituate on my own. God Bless. Peace.

 

[Gman]

It's not too late to stop it.

 

[Christopher805]

That's a good question. I do not know but I'll tell you this I am looking at other treatment options. I read a few posts where folks have said they've tried everything including TRT and eventually habituated on their own. So, I guess I can stop. It's my call. I have so much anxiety around wearing the WNG that it's probably working against me. I will say this my clinician actually told me to stop the treatment of it annoys. Now, what the daily battering of the WNG has done to my brain and my ears only God knows. Trust me it's no piece of cake.

 

[bobvann]

Thanks. I am about to re try it. I will not push it too far no further then the 90 day trial if it does not. As far as doing it on my own not happening either.

 

[Christopher805]

Most people who seek out TRT are experiencing severe tinnitus, which includes ear pain. So these folks are desperate and willingly to believe the promise of success spewed by practitioners. Sad but true. Case and point. I had a hearing test no hearing loss but severe t and hyperacusis. I was told repeatedly that given my test results that h would be gone anywhere between a month and half to two months. Of course I jumped and dropped $4,000. As soon as I got home with WNG I knew I was in trouble. Things started to sound distorted with them on. The air coming out he vent had it own unique sound.

The clinician said the generators cannot cause this. They said WNGs do NOT amplify or distort external sounds. Yeah right. The point I'm trying to make is you will buy and spend any amount of money to feel better particularly if practitioners tell you with this device your will not be better but the hyperacusis will be GONE. Now 6 months later I ask him the question what happened to 6 weeks, his response is... I will let you know when I receive it. But do not hold your breath. God Bless. Peace.

 

[mrbrightside614]

Do they make better generators with different noises (violet, pink, brown)? Getting tired of white-knuckling this same old high pitched bullshit in my ear, and violet noise masks it nicely.

 

[Phat Tuna]

If you have hyperacusis, shouldn't you be listening to pink noise instead of white noise?

 

[bobvann]

Snake oilist. Sounds like the 1st practitioner I tried TRT with. I returned them one day after they made my ears scream and drove me to tears. This time I will try to break them in gradually as per Michael Leigh's suggestion. Will see how it goes. CBT was no real help either. And simply getting passed "the distorted thinking" is horseshit. I'm almost 3 years in and hyperacus although not as bad is still bothersome which is why I can't drum.

BTW ALL expensive hearing aids come with a trial period. You still have to pay but get it all back in the end. I wounder why they do that rather than paying at the end of the trial period. Perhaps they make interest with the $$ sitting in their account. I will ask.

 

[Christopher805]

The WNG give you the option to listen to either white noise or pink noise. I have mine set on pink noise, which should address hyperacusis. God Bless. Peace.

Actually I should replace the widely used acronym WNG with "ear level sound generators " to remove any confusion. Thank you for the comment Phat Tuna. You are right Pink Noise address hyperacusis. God Bless. Peace.

 

[Gman]

I'm sure this has been posted before, but I will post again:
https://www.ncbi.nlm.nih.gov/pubmed/30178067
Seems like unstructured noise in TRT may not be too good for the brain.

 

[Christopher805]

Gman,

I just read the the study you attached. The findings are very unsettling. It's a punch in the gut.

The study makes it very clear the potential long term damage to the brain as result of TRT white noise.

Honestly, I am not surprised by the findings. After wearing the sound generator for 6 months, it's easy to believe the negative effect it would have on the brain. TRT for me and other current patients I've talked to has been brutal, a nightmare. Your head feels like it's going to burst from the sounds created by generators. It is a fight everyday to wear them. There are several older posts on this thread by someone name DouglasC that describes his horrid experience with TRT. I can confirm everything he said is TRUE. His comments are legitimate. I believe it has made my tinnitus and hyperacusis worse.

While I am very disturbed by the study, I am very appreciative that you shared it with me. Thank you for the information. God Bless. Peace

 

[Gman]

Gman,

I just read the the study you attached. The findings are very unsettling. It's a punch in the gut.

The study makes it very clear the potential long term damage to the brain as result of TRT white noise.

Honestly, I am not surprised by the findings. After wearing the sound generator for 6 months, it's easy to believe the negative effect it would have on the brain. TRT for me and other current patients I've talked to has been brutal, a nightmare. Your head feels like it's going to burst from the sounds created by generators. It is a fight everyday to wear them. There are several older posts on this thread by someone name DouglasC that describes his horrid experience with TRT. I can confirm everything he said is TRUE. His comments are legitimate. I believe it has made my tinnitus and hyperacusis worse.

While I am very disturbed by the study, I am very appreciative that you shared it with me. Thank you for the information. God Bless. Peace

Just to let you know, you need to put an @ before a person's name, if you want them to be alerted to your reply.

Anyway, to put it in context, you're only 6 months in. Some people do TRT for a year, 2 years, or even longer.
It's just one study, but you are right that it's unsettling and so is its questionable efficacy according to other studies:
https://www.tinnitustalk.com/thread...rapy-is-ineffective-latest-study-finds.35055/

The problem is TRT practitioners lump all types of hyperacusis together including reactive tinnitus and treat them the same way. I think reading through other threads, it seems clear certain types aren't benefitted by this approach. But I'm no expert, as I've never used WNGS or done proper TRT. White noise and pink noise irritated me so I stopped after several weeks. Other things did help me overcome the bulk of it much more.

 

[Christopher805]

This thread is replete with posts that mention real TRT should include counseling to be successful.

Folks FYI, the counseling is nothing more than a 1 hour session where the clinician flips through laminated pages of diagrams of the brain. It felt like some door to door salesman flipping through laminated pages trying to sell me windows.

After this session concluded that was it for counseling. You are on your own. Of course you can ask questions via email but guess what the answers will be be inconsistent and vague. You ask four people in the office the same question you get four different answers. You would at least think the clinician would suggest CBT. Nope. Some of you will say he did not go to someone that qualified, certified who provides real TRT. I went to the best. Trust me when I say it. The Best.

TRT seems to be a mixed bag of worms. It appears there are two distinctly different treatment protocols for hyperacusis with pain and hyperacusis that causes loudness. Not surprising practitioners are using TRT to address both conditions. In my case I underwent TRT for tinnitus and hyperacusis with loudness. Within 5 months of treatment I developed hyperacusis with pain. However, I am still expected to use generators. Listening to broadband noise is bad enough but acquiring other conditions while wearing generators is not acceptable.

@Gman
You would think they would be more responsible and ethical than to lump them. But if the money is in the generators then it is more profitable to lump them all. The patients obviously get the short end of the stick twice by forking out thousands for generators and testing and ending up with a treatment that is not suitable for their particular condition. I have a friend who has suffered while undergoing TRT for almost a year and has had enough. He feels the treatment has made his situation worse. He started TRT to address his hyperacusis and now he has tinnitus as well. He now wants to stop treatment because it's just that bad. Gman I would love to hear what other things helped you overcome. Thank you for all the information. God Bless. Peace

 

[Autumnly]

! Initially my hyperacusis was annoyance now it gravitated to pain. Did TRT make it worse? I do not know.

Regarding TRT and pain-hyperacusis...

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.

 

[Contrast]

I love how the clinical world pays ZERO ATTENTION to what REAL HUMAN BEINGS have to say about TRT. But just flowcharts it because it's the approved option.

 

[bobvann]

Where is Michael Leigh to chime in? He is the TRT king! All I know is if I feel it's going to make things worse again, I am not going to think "But but I am supposed to give it 2 years." I am the one who will wind up screwed. The clinic will not be held accountable. This clinic is not going to be as problematic and understands I am just doing it on a trial basis.