Did TRT (Tinnitus Retraining Therapy) and WNGs (White Noise Generators) Help Your Bad Hyperacusis?

Discussion in 'Support' started by Rojo, Jan 14, 2019.

    1. Rojo

      Rojo Member

      Tinnitus Since:
      October 2018
      Cause of Tinnitus:
      Neomycin/Xiflaxin
      Hello,

      For anyone following my posts and the chat, I have severe and seemingly endlessly progressive hyperacusis that I can't seem to figure out how to help. I had a positive Lyme test and IV antibiotics that were completely brutal in December, I'm still on 1.25mg Ativan daily definitely with tolerance/side effects/interdose issues, I still take Nexium daily for bad reflux and IBS which seems to directly cause anxiety/tinnitus and hyperacusis symptoms when I eat (I feel very sick, get bloated, don't seem to be absorbing nutrients -> still losing weight despite snacking most of the day). Even trying to not overprotect around the house, moderate sounds seem to build aggravation, and when dishes clank or the dog barks not even nearby it feels... bad. Each day feels slightly worse than the last, which is saying something when typing this message is uncomfortable, music is unbearable as is the TV, can't even go outside without double protection, etc.

      I happen to live very close to Pawel Jastreboff's clinic and have emailed him and he says he thinks he can help me, and can see me next week. He says treating the Lyme's is paramount, Ativan is not recommended to be on, and that he recommends full TRT therapy.

      I've gotten a few negative remarks so far that it's all BS that doesn't work... was anyone's hyperacusis improved by TRT and WNGs? I feel like I'm losing hope and will end my life soon at this rate. I need advice on what I can do about any of this, the hyperacusis, the Lyme's, the GI/leaky gut, the benzos... I don't want to die but see little option if things don't turn around soon.
       
    2. Julien87
      Happy

      Julien87 Member Benefactor

      Location:
      France
      Tinnitus Since:
      2006
      Cause of Tinnitus:
      Noise exposure (concert)
      Bump
       
    3. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      As I have mentioned to you already @Rojo TRT helped me. It reduced my tinnitus to a very low level and my hyperacusis was completely cured using white noise generators and has remained so for 22 years. Please do not listen to people that are negative towards TRT without any experience of trying it.

      I wish you the best of luck and hope you will be able to get some help soon.
      Michael
       
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    4. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      No, TRT does not cure hyperacusis. Think of a bad knee injury for instance; would you be able to walk normally again without surgery, without identifying the cause of the injury and repairing it?

      TRT cannot repair the damage made by loud sounds, basically because it cannot identify and it cannot treat the underlying cause of hyperacusis. TRT is equivalent to say "live your life as normally as you can and see if hyperacusis goes away in time". So it is a scam.
       
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    5. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      You are completely wrong as my Hyperacusis has been cured for 22 years using white noise generators for 2 years as part of TRT. Please do not make statements that are untrue, especially as this person is in a distressed state.

      Michael

      @Rojo

      TRT, As I See It.

      I think some people misunderstand TRT and the way it can help tinnitus. Whilst a person is entitled to an opinion, if they haven’t been on the programme and only read reports on it, I don’t believe they are getting the full picture. A number of people have asked me about its effectiveness and when should it be administered. I covered this in my post: What is TRT and when should it be started: https://www.tinnitustalk.com/threads/what-is-trt-and-when-should-it-be-started.19024/

      TRT has quite a following and has caused much debate in this forum and elsewhere on the Internet. Unfortunately, a lot of these comments haven’t been favourable, although those that have had the treatment or elements of it have said they found it helpful. This treatment is expensive and I will be candid and say, only those that can afford it are able to try it.

      Where I live the treatment is free but it is only available at selected hospitals. Even then, some don’t follow the TRT protocol and adapt the treatment to their requirements but good results have still been possible. In some parts of the UK it’s just not available nor is CBT. Therefore, anyone wanting TRT will have to pay privately at clinic. Other forum members have told me the treatment is free in their country and like the UK, it has been adapted to include some elements of the therapy. This may be wearing one or two white noise generators and not always having tinnitus counselling with a Hearing Therapist, so a person may be left to just get along with it.

      I have learned in some countries medical insurance won’t touch TRT, so a person will have to pay for it out of their own pocket, which I think this is unfortunate.

      So what is TRT and if one is able to pay for it should they, taking into account some of the negative comments that it has received? Having had TRT twice over 20 years following the TRT protocol, I will try to shed some more light on this treatment and hopefully give the individual a little more clarity to make up their own mind on whether the financial outlay is worth it, but more importantly; is it effective as a treatment for someone that has tinnitus and hyperacusis and enable them to have a better quality of life?

      I first want to say the following is based on my own opinion and therefore is not professional medical advice. The onset of tinnitus can be quite an emotional roller coaster for a lot of people, and I believe a person needs time for this to settle. Many people habituate within the first six months to one year of the onset of tinnitus without any treatment. If a person just has tinnitus without any additional symptoms, such as dizziness, deafness or balance problems. I think a period of at least six months should elapse before starting a long-term treatment such as TRT. Anyone paying privately needs to know they are getting the proper treatment. Any clinic not giving you this service then I advise you to go elsewhere because it is not TRT. You should be given two white noise generators to wear and also having regular counselling sessions with a Hearing Therapist or Audiologist. More is explained in the above link.

      TRT is not a complete cure so anyone seeking this might be disappointed. However, the sound therapy, which involves wearing white noise generators, I believe can cure hyperacusis as in my case. It should be noted, whilst this treatment may not cure tinnitus, many people find its perception reduces to such a low level they can comfortably live with it. Habituate. In some instances a person might be unaware of their tinnitus for long periods. Each person will respond to it differently.

      If you have ever lost someone that is close to you, such as a parent, partner or even a pet then you will know what it is to grieve. Most people will go through this process at some point in their life. It is not often talked about but we all know it’s something that’s inevitable and will come to us sooner or later perhaps even more than once in our lifetime. It requires a period of time for a person to accept that their life has changed, and time is needed to adjust so they will eventually be able to move on.

      Why am I saying this some of you might be wondering? A forum member recently asked what does TRT involve? I was explaining to him, the counselling part of the therapy and the relationship between patient and Hearing Therapist. At first the therapist discusses with the patient how the tinnitus makes them feel and how it has impacted on their life. Often people say they have lost interest in the things they once liked doing, which is perfectly understandable. The main goal is to gradually help them to look at life differently and with a more positive outlook. Over time the negative thinking that is often associated with tinnitus and hyperacusis is gradually dispelled and demystified. The Hearing Therapist does this in a controlled and precise manner so that the patient feels relaxed and not pressured.

      The forum member then said it sounds like a form of grief counselling. After we had spoken I thought about it and have to say I believe it to be a good description, because that’s what the therapy part of TRT is akin to. Thanks Paul @PaulBe. The amount of times people have told me over the phone or read posts in this forum: “If I could only get my life back”. “My life used to be perfect”. “I keep looking at peoples ears and wondering what my life used to be like”. “If I could only hear silence again”. And so on.

      When someone gets loud intrusive tinnitus with or without hyperacusis, in an instant their world has been turned upside down. Some go through periods of stress, anxiety even depression and yearn for the way life was before the onset. They need time to adjust and to accept this new anomaly in their life. Some have an easier time than others at habituating, so may not need the help of a tinnitus counselling. For some that find the tinnitus and hyperacusis severely intrusive TRT and CBT can prove to be helpful. It all depends on the individual, their emotional makeup and the severity of the condition because we are all different. It is for this reason; the treatment can take up to 2 years for a person to adjust to a different way of life and often with a positive outcome.

      I was fortunate to have TRT twice and found it to be helpful on both occasions. I only wish that it were more readily available to others.
       
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    6. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      Michael, you know, as I do, that TRT does not cure hyperacusis. TRT has only been used by some "doctors" (and some of the TRT advocates or sellers are not even doctors) to make money and it is a total scam.
       
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    7. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      You are testing my patience @Juan so please do not tell me what I know. I live in the UK and had TRT twice the full treatment.

      I had very severe tinnitus and hyperacusis in 1996 which I have mentioned in this forum many times. I started TRT treatment late 96 and in two years my tinnitus reduced to a very low level and my hyperacusis was completely cured wearing white noise generators 10hrs a day and using a sound machine at night.

      In 2008 my tinnitus increased to very severe levels and believe this was caused by "noise trauma" I have documented this in my post: My experience with tinnitus. https://www.tinnitustalk.com/threads/my-experience-with-tinnitus.12076/ My hyperacusis did not return and has remained completely silent/cured to this day.

      You have not tried TRT so have no experience of it I have, so please don't tell me what I know because I know more than you about this treatment.

      Michael
       
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    8. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Rojo

      Find a therapy that works for you personally. This isn't a one size fits all type of thing.

      Conditioning your auditory system (hyperacusis) takes time and patience and persistence.
       
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    9. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      Just making this statement I seriouly doubt you ever had hyperacusis.

      My advice to someone who is knew to hyperacusis: accept it and try to live a life as normal as possible. Maybe it will improve over time or maybe hyperacusis will stay. Listening to sound is good, but by itself it does not cure hyperacusis, and that's a fact.

      In life we are going to run into loud noise in many situations, and this is something we cannot control. Hyperacusis can get worse if we are exposed to very loud sounds, but there is nothing we can do to avoid this, we have to get on living, try to be positive and hope for the best.
       
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    10. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      You can doubt all you like I know what I had. When talking to people the sound of their voices hurt so much I had to ask them to speak softly. When going out on the street I had to wear foam earplugs. Kitchen plates and cutlery hurt my ears so much I had to run out of the room. The slightest sound and my tinnitus would spike. The pain I felt was unbearable at times... I know what hyperacusis is because I lived with it and now it's cured.

      My experience with hyperacusis and tinnitus has enabled me to write many posts and articles in this forum to help people. They are available to read on my "started threads" All of my posts and articles are written from personal experience and nothing has been copied from anywhere else, it is all my own work and speaks for itself.

      Michael
       
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    11. AUTHOR
      AUTHOR
      Rojo

      Rojo Member

      Tinnitus Since:
      October 2018
      Cause of Tinnitus:
      Neomycin/Xiflaxin
      I am at the point where practically any sound brings discomfort. I think my brain and my ears are both broken... time has only been my enemy so far. Almost 5 months and never an improvement, always worsening. I think it is time to end things soon. Jastrehoff wants almost 3.5k for all the tests, the TRT, and the WNG, and I have like $300 to my name. There is no more hope for me. I'm filled with such sadness about everything in my life i loved and everything I wanted to do in the future. But I am tired of suffering.

      Maybe I will ask the doctor about Keppra as a last ditch effort to try and save myself.
       
    12. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      That's just ridiculous. Dont waste the money.
       
    13. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      HI @Rojo

      I understand how you feel for I have been there but don't give up. Your brain and ears are not broken. Have a talk with your GP or Professor Jastreboff and see what they recommend don't give up. Please read my post in the link below as I believe it will help you.

      Michael

      https://www.tinnitustalk.com/threads/my-experience-with-tinnitus.12076/
       
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    14. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      5 months is a very short time for hyperacusis. If you can, try to go for a few weeks to a quiet place, like the beach or somewhere in the forest, a place where you can relax, without traffic and city noises. Maybe you can rent a cottage or an apartment near the beach. It will do good! You need to feel safe and sure that there will not be noise around, and walk around nature. You will see things more positively and realise you can be outside home and be ok.
       
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    15. AUTHOR
      AUTHOR
      Rojo

      Rojo Member

      Tinnitus Since:
      October 2018
      Cause of Tinnitus:
      Neomycin/Xiflaxin
      I'm poor, jobless, stuck in my parents basement. Leaving the house even with hearing protection feels very uncomfortable, and theres jets going by overhead constantly that seem to make it downright severely dangerous for me at this point. Unless anyone out there in MD has something to offer me out of the pity in their heart, im both stuck and screwed.
       
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    16. Irish

      Irish Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Loud music from nightclub
      I'm just about to order the following devices and some programming sessions.
      https://valuehearing.com.au/hearing-aid/widex-unique-220-passion/
      I should have them in a few weeks time and will start using them then on a daily basis.
      I'll keep the forum updated with my progress.
      I'm not expecting miracles or a complete cure for my H and TTTS as I know that's unlikely but even an improvement in my situation would be great, as on bad days it's very debillitating and even on my better days it's still present albeit to a lesser extent, and of course the H is ever present.
      Thankfully my TTTS is easing up a bit now, now that I'm shaking off this bad cold that I had, which tends to exacerbate my ear pain and discomfort.
       
    17. Coffeebean

      Coffeebean Member

      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Noise
      I cannot vouch for TRT as I have not actually done 'true' TRT myself.

      I have, however, used a lot of the elements which are also found in the TRT hyperacusis protocols to treat my hyperacusis.

      This includes gradual systematic exposure to sound, pink noise, anxiety reduction, not overprotecting (but always using earplugs when sounds are at actual damaging levels, such as when using power tools or going to concerts). Mostly I self-treated, but with regular check-ups with an audiologist who also provided me with some suggestions, advice etc. You can find my story elsewhere on this forum.

      I have noticed major improvements by doing this, up to the point where my hyperacusis is 95% gone.

      An important side note to make however, is that my condition was noise-induced (as it is for most people). You mention having had Lyme disease. I am not expert on the subject, but as far as I am aware you will need to have the Lyme treated (to the extent possible) else it might continue affecting your nerves and TRT / sound therapy will have limited effects.
       
    18. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      How would you explain the fact that some people do normal activities, go to work, drive, sometimes they go to a restaurant, go shopping for groceries, out for a walk etc and they still have hyperacusis or tinnitus after many years?
       

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