I Hate TRT (Tinnitus Retraining Therapy)

Discussion in 'Support' started by threefirefour, Aug 23, 2017.

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    1. threefirefour
      Peeping tom

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      TRT is just a glorified scam that sells a natural process. What pisses me off about it is not that people waste their money, a fool is easily parted with their money. It's that our government (US) chooses to fund TRT for vets instead of actually funding research for a cure. It's been around for 30 years, and it's still the """""best""""" treatment we've got. It's almost if you get what you pay for. I hope they all go out of business TRT makes me so mad :mad:
       
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    2. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      I do not know what goes on in your part of the world as I live in the UK. I have had TRT twice in 21 years of living with Tinnitus and had good results. TRT done properly is not a scam. Whilst results between people will be different most people have a good success with it. However, if a person goes into this treatment with a negative mindset or is looking to be cured of tinnitus they are doomed, as the treatment will not work or any other for that matter.

      Michael
       
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    3. AUTHOR
      AUTHOR
      threefirefour
      Peeping tom

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      I've tried online to see how bad it was. Yeah it's pretty shit. I don't hate scams for being scams. People will fall for scams no matter what, and I fully believe all TRT programs are inherently scams. They simply sell something you can get for free. What I do hate though is they're competing with research for money. As much money needs to go to research and as little as possible to TRT. I hate the idea of habituation because I firmly believe it's giving up, but I'm thinking of putting TRT online to help obstruct their cash flow.
       
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    4. maltese
      Batty

      maltese Member

      Tinnitus Since:
      10/2016
      Cause of Tinnitus:
      Club
      TRT is available free on the internet since forever. White noise is free, headphones are free, a recording of a counselling session are online. A book that TRT is based on is available at fairly low price.

      As I believe Micheal will point out ;) it's not even close to 'proper' TRT with counselling and 2 WNGs but it's as close as you can get to TRT when You have no money
       
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    5. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      @maltese You are so right. Some people think TRT is just wearing white noise generators and having a pep talk with an Audiologist or Hearing Therapist. Some private tinnitus clinics have come up with a treatment called: Desensitisation. The patient is talked to as mentioned above and then supplied with 2 white noise generators and told to go on their way. Treatment can cost up to £3000 and more.

      I am not saying a person cannot gain any improvement with the above treatments but I have talked to quite a few people that have tried this, and very few have had good results. Unless a patient has regular counselling sessions with a Hearing Therapist or Audiologist whose trained in the treatment and management of tinnitus, a patient is unlikely to see any benefit in just wearing white noise generators. This is one of the reasons TRT has attracted criticism. Tinnitus clinics that call their treatment TRT and not providing regular counselling is not TRT.

      Through regular talk therapy sessions with a Hearing Therapist. The negative thinking that is often associated with tinnitus is gradually dispelled and demystified and this can take up to two years. The wearing of white noise generators is essential, as this provides sound enrichment and helps to desensitize the auditory system when hyperacusis is present as is often the case with noise trauma.

      Michael
       
    6. Tamalak
      Volatile

      Tamalak Member Benefactor

      Tinnitus Since:
      3/2011
      Agree with the OP. If my toilet wasn't working and the plumber arrived and he said "whelp, I'm not gonna fix your toilet, but here's some therapy to help you adjust to your new life of shitting in the woods".. guess what, he wouldn't be a plumber for very long. Because that industry isn't full of frauds.

      Something in your ear or auditory processing is broke resulting in a noise. A doctor should fix the noise or there shouldn't be a fucking bill.
       
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    7. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Tamalak
      Please can you edit your post from swearing ?
      Thank you ,love glynis
       
    8. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I don't know the exact distribution of funds, but I read that the estimated spend for things related to vet's tinnitus is in the Billion dollars (yes with a B) per year.

      I wish a good chunk of it was directed at research, because it would dwarf the funding of all the remaining entities in the world and massively accelerate research. However, I doubt it would happen: it's a strategic move that is inherently difficult to implement, as everyone wants "something now", from CEOs chasing profits to patients chasing relief.
       
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    9. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Sadly TRT is hardly done on the NHS due to the cutbacks and the time it takes up to a year or more .
      This is from Audiology in the UK
      Love glynis
       
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    10. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      Fortunately it is still practiced at my hospital Glynis the full treatment too.
      However, I agree it not done wide spread across the UK although there are some elements of it used. Issuing of the white noise generators better than nothing perhaps.

      Michael
       
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    11. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      High @Michael Leigh ,
      Our hospital issue White noise generators and do a tick chart.
      The lady audiologist I know said most are not trained to do TRT as the course costs to much.
      I hope the service will come back and will be pushing for it with CCG's.
      Love glynis
       
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    12. Sonic17
      Wishful

      Sonic17 Member Benefactor

      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      ? neck injury/unknown
      ........Or live somewhere where TRT is not offered. I live in rural Northern Canada, noone here has been much help for my Tinnitus.
       
    13. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      I think you should apply @glynis as you'd do a good job as a tinnitus counsellor.
      Michael
       
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    14. AUTHOR
      AUTHOR
      threefirefour
      Peeping tom

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      Wow NHS is smart to cut out the useless fat. Wish America were more like that.
       
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    15. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @threefirefour ,
      TRT is not useless fat and can help so many people.
      It does cost a lot of money if not on the NHS where it's only done in some hospitals.
      It supports using white noise generators and your emotional response also ...it is one choice people might seek to help them cope better.
      I know people are for or against TRT but unless you have tried it then it's hard to have a opinion about it.
      I haven't had TRT but know people whom it has helped.
      Love glynis
       
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    16. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      Well said @glynis I have had TRT twice and the proper treatment not a streamlined version and have had good results.
      Michael
       
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    17. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      In London for the day @glynis getting my new white noise generators...eat your heart out...:p
       
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    18. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Unfortunately, like many things audiological, the cost structure of treatment makes it look lucrative to any fool who can do a two-day seminar, get 85% on a true/false test and then declare themselves a therapist. I'm not a great believer in it either, but there is a difference between doing it properly with a tertiary trained expert supervising, or the half-bottomed (not quite swearing Glynis...?) Neuromonics franchisee who doesn't really know what it is but the profit margins are great.
       
    19. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I glanced and thought you said wings. My first thought after that was: so much for TRT.
       
    20. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      Sorry for the misunderstanding @PaulBe I've amended the post. Just teasing @glynis . I've had good results with TRT as previously mentioned. My tinnitus is variable from slient, mild, moderate or severe. It no longer reaches very severe levels that would last for days. Today it is silent. I like to use my WNGs even when my tinnitus is silent and they are very useful when it is intrusive but I can manage without them.

      All the best
      Michael
       
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    21. AUTHOR
      AUTHOR
      threefirefour
      Peeping tom

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
       

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    22. Telis

      Telis Member Hall of Fame

      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Drugs barotrauma
      Why do just the white noise portion of trt cost 3-4K dollars ? This would be the first clue that people are seriously being taken advantage of/scammed.

      I wonder what the profit margin is on these things. Looking at them and holding them, they look like a cheap piece of plastic with a very low quality speaker. It's amazing that these audiologists can present this product with a straight face at these outrageous prices.

      Maybe I'm missing something, are they tuned around your individual tinnitus ? Set up on a computer according to your audiogram maybe? After talking to the audiologist, my understanding was that they just spit out terrible quality limited (think up to 7khz) broad band white noise?

      This was a few years ago now, maybe things have changed for the better. I was also offered the counselling portion for around 500 dollars, this at least sounded half way reasonable to me, but the wngs (at that time) were laughable For that kind of money.

      Her main pitch was that they come in different colours, maybe I was mistaken and she actually meant that they came in different finishes like gold or platinum.
       
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    23. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      I agree with you about the wngs being overpriced but that's the way it is. I have been wearing WNGs for years. This week I was fitted with two new digital WNGs that had to be setup on a computer by my Audiologist. I was able to select and set two different type of sounds to my specific needs. I agree that if I had to buy them they would have cost a lot of money but were given free under my healthcare system.

      A few years ago I bought two of the smallest WNGs available. They fit inside the ear canal and rest just outside it. They can hardly be seen but one stopped working. The price has risen considerably so haven't bothered to renew it.
       
    24. fishbone
      Shitfaced

      fishbone Member Hall of Fame

      Tinnitus Since:
      1988
      Cause of Tinnitus:
      loud noise and very bad sickness
      I had TRT treatment close to 20+ years ago and It was worth every penny. Hyperacusis on top of tinnitus is just brutal. Although my tinnitus did start out as a low hiss, the hyperacusis and pain in the ears was brutal. I have tons of empathy for those that have tinnitus + hyperacusis. My tinnitus never got better but my hyperacusis is gone.

      I will be feeding the homeless again this Sunday and i expect a crowd of 3-500 people, in a small less than 1000 sq feet building. The noise is loud, if i still had hyperacusis, there is no way i'd be there.

      Wish all of you lots of luck :)

      We support eachother and it will never stop :)
       
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    25. MBH

      MBH Member

      Location:
      Upstate NY
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Overloaded stress
      TRT sounds good but all the doc I've been had no clue and offered nothing I went myself for hearing aids with maskers due 2 other audio said no. I think we all can learn to ignore it due to we have no choice. Docs don't want to mess with inner ear and the brain. And that is across the global.

      Docs need to come with a hands on treatment and not some research paper. I think they know it's a bad Sound that's transmit thru the ear and works the brain. They know people are suffering and they look at you with five eyes.

      Mine is in the back of my head and I hear a pin drop a mile away. Docs can't even tell you the correct meds. There is so much merry go around of info and all I want to do is put a pin in my head and let the sound out. I learned more from this site.
       
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    26. Telis

      Telis Member Hall of Fame

      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Drugs barotrauma
      Well I'm glad they have helped you Micheal
       
    27. Fabrikat

      Fabrikat Member

      Tinnitus Since:
      1973
      Cause of Tinnitus:
      Otosclerosis then volume then viral infection
      My tinnitus therapist, very knowledgable and a researcher in the field, suggests that the evidence in favour of TRT, is sketchy at best. She believes white noise generators are of little benefit, but acknowledged that the 'talking' part of the therapy may be useful for some people. It suggests to me that perhaps people who who report success with TRT, may have more likely simply habituated with time.
       
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    28. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      With respect @Fabrikat I don't think your tinnitus therapist is as versed in tinnitus as she appears otherwise would never had made such a statement. However, she is entitled to her opinion even if it's the wrong one. It's also quite apparent she doesn't practice the TRT therapy with any tinnitus patients and probably doesn't have the condition either. Most Hearing Therapists and Audiologist who practice TRT also have tinnitus. They were either born with it or acquired it at some time in their life.

      In my opinion, I think it's better that a Hearing Therapist or Audiologist working with a tinnitus patient has tinnitus, otherwise they can never fully understand how the condition affects a person or give good counselling which is essential when administering TRT. I have had this condition for over 20 years and consider myself a tinnitus veteran like others in this forum - I have counselled people with tinnitus but it must be stressed I do not consider that I know everything about it. My consultant who is an Audiovestibular physician said that I know more about tinnitus than her. She explained because she has never experienced tinnitus.

      It is for this reason so many people in this forum feel let down when seeing their ENT Dr and then realise he or she has very little understanding of tinnitus. People mustn't feel too disheartened by this although the bedside many of some ENT Drs leaves a lot to be desired. ENT doctors know all about the anatomy of the ear. They are able to treat it medically or surgically and I believe the majority of them do this well. However, most of them know very little about tinnitus. It is the Hearing Therapist and Audiologist that a tinnitus patient is usually referred to for help with their tinnitus as it requires a different set of skills which are not learnt by training alone but personal experience having already got the condition.

      TRT, CBT, medications and white noise generators can help people with tinnitus to have a better quality of life. However, it should be understood, these are treatments and not cures.

      Michael
       
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    29. AUTHOR
      AUTHOR
      threefirefour
      Peeping tom

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      @Michael Leigh feel free to shill for TRT all you want. Doesn't change the fact that more and more countries are gonna start cutting the useless fat once they begin to realize it's useless, and hopefully use that money for research to actually treat tinnitus like the Netherlands.
       
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    30. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      It is the cost of TRT and the length of time the treatment takes which can be up to two years and has nothing to do with useless fat as you aptly put it. I have had the treatment twice you haven't had it once. Even if the treatment were free there are some people such as yourself, that wouldn't gain any benefit from it or any other tinnitus treatment, because they have a Negative Mindset and convinced themselves that nothing can be done to help them. Sadly there many people with this thinking.

      Michael
       
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