Starting TRT and Question on Hearing Test Accuracy

Discussion in 'Support' started by russiancarl, Aug 14, 2014.

tinnitus forum
    1. russiancarl

      russiancarl Member

      Hello everyone,

      I had a great appointment with a tinnitus specialist recently and we decided to start on TRT. I am hopeful it will work though I am a bit surprised at the simplicity of it. I got a lot of answers but at the same time not enough so I thought maybe you guys might have some experience... for some reason I forgot to bring up all my concerns with the doctor and my next appointment isn't for a month.

      Namely, does tinnitus affect hearing test accuracy? It was noticed that I had high frequency hearing loss starting to dip down below 25 on the chart they show you at around 8khz. This was also the frequency that my tinnitus kinda matched too. Is it possible that I don't actually have hearing loss in this range and I just can't hear the beep beep beep's during the test as they match it quite closely? No real idea how it works.

      Next, am I really understanding TRT that it's really as simple as playing some pleasant sounds and doing mindful meditations? I want to stay positive but part of me is saying... how does that work? I mean, it's not even like a real therapist where you see them weekly to discuss it. I'm still going to give it my all as I know the second I start doubting it the effectiveness would be reduced. Maybe I'm misunderstanding it?

      Thanks guys!
       
    2. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      Hey I'm not sure if t can can cause problems with accuracy of hearing tests. There were some threads about it. A few people said it would not but I don't know for sure.

      Maybe this will help your understanding of TRT. https://www.tinnitustalk.com/threads/neuromonics-vs-trt.4288/
       
    3. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      TRT is a little bit more than just using sound generators and meditation. They explain you what tinnitus exactly is.
      Taken from www.tinnitus.org:

      "This simple experiment shows almost anyone can detect background electrical activity present in every living nerve cell in the hearing pathways as a sound. Although some areas of the auditory system may be more active than others, every neurone will contribute to some extent to the final perception of tinnitus. These electrical signals are not evidence of damage, but compensatory activity that occurs all the time in the auditory system of each one of us. Compensation can occur as a response to changes in our sound environment (e.g. silence) to hearing loss which may be a natural part of ageing, or to exposure to sudden noise. Its good to think of the sounds produced by this compensatory activity as 'the music of the brain'."

      So T is either normal somatosounds or a compensatory nerve cell activity. I think in most cases here on the board, it is not the normal body sounds we hear (like in the Heller & Bergman) test, but we have overactive neurons in the brain which compensate hearing loss at certain frequencies. So the brain started generating the sound itself.

      TRT teaches you that this is just a normal function of the brain. In some people, this overactive neurons can be heard, in others not. Typically, the onset of T is by a trigger like loud noise, anxiety or whatever. At this moment, we start hearing Tinnitus. And here the problems start. We hear a new intrusive sound and immediately develop an aversive conditioned response that manifests in limbic and autonomic nervous system.

      TRT now explains this to you that the most distress is by your reaction. It is a sound generated by the brain that cannot kill you. TRT is all and only about your REACTION. This will be reatrained. It is hard work and takes 12 to 18 months, in severe cases longer. Sound enrichment is used to work on the brain plasticity that the sound becomes less intrusive. So you need to understand and fully commit to the concept that T is a normal function that came into your consciousness and that it is only your reaction making the distress. Once your reaction diminishes, T will fade into the background.

      I hope I explained it correctly.

      Perhaps to add how it works in my case: Just giving this explanation did not simply change my reaction. Although it is a normal nerve activity in my brain, it annoys me to a high extent. It is high-pitched like a dog whistle and you cannot simply day: Ah ok, just your brain. Accepted.

      So you must work on your reaction every day. This is hard work. And you use sound enrichment 24/7. In the long run, my hope is, T will be accepted by my body and brain fully and goes into the background. In other words: I hope the day will come when my body is tired of being stressed about T, get used to it and just accepts it.
       
    4. UserID
      Lucky

      UserID Member Benefactor

      Location:
      Tampa, FL
      Tinnitus Since:
      05/01/1972
      Cause of Tinnitus:
      Artillery
      Even if you have some hearing loss and need aids, you'll find they can be of some help in mitigating some of the sounds in your head, since you'll be hearing more ambient sounds.

      TRT is great, but I've found TRT works as well with a home devised system as any of the companies' expensive earwings. For instance, Neuromonics costs $5200, and what a rip off that was! Instead, buy yourself an MP3 player and download sounds that mitigate what you hear in her head, something that closely matches it. Listen to that or those recordings for at least four hours each day and never turn the volume above the T. Always set the volume just below the T volume so that you can still hear some it. Eventually, you'll find the same help coming from those simple items as their expensive devices.
      David
       
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    5. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Yes. Absolutely right. With the very expensive White Noise Generators, you only hear white noise.
      Better use your smartphone and listen to nature sounds, audio books, radio, music, whatever.
      TRT only says you should have sound around you 24/7, not necessarily WNGs.
       
    6. russiancarl

      russiancarl Member

      Yeah I got to use the neuromonics device while I was in there for an hour or so and while it was nice even the doctor said it's not worth it and there isn't anything special. She also said the tinnitus maskers which cost 2k for a pair aren't worth it either because they only play white noise.

      Actually, she was super useful and had a fountain of information. She trained with Jastreboff and said that his literature isn't updated. That white noise isn't actually the best noise and it's what there was back then and perhaps its what he uses now because that's what is known. And that other noises, particularly relaxing ones like nature sounds, are shown to be just as effective if not more.

      I was also told it didn't have to be near my tinnitus sound in level at all. That setting it near the volume wouldn't help anymore than at a reasonable tone. Perhaps she advised this because it took 65 dB of static to drown mine out during testing.

      Anyone have this kind of experience with their TRT? Specifically, nature sounds instead of white noise and setting it much lower than your tinnitus and not at nearly the same volume?


      Thanks. It's nice to have affirmation that I'm on the right track with these sounds. I'd much rather listen to these nature sounds or anything over white noise.
      I'm searching for some good earbuds that I can wear for a few hours at a time and hopefully starting therapy soon.
       
    7. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      When I work and sit at my computer, I start a program called Aire Freshener. It is free.
      Here you have wonderful nature sounds like for example fountain or crickets.
      This program is also recommended on www.tinnitus.org.
      So save your money for expensive Neuromonics or WNGs.
      If you want to do Neuromonics, you can search here for generalfuzz and ACRN. There is a website which generates the same tones. I tried them, they give some relief, but on the long run don't help.
      I also tried WNGs and hearing aids. Gave them all back.
      So I use my smartphone or computer and listen to nature sounds.
      Of course I want silence, like everyone here, but we must get used to T. And after a long time, hopefully we can live again without any sounds or masking and just accepts T as a boring sensation in our head.
       
    8. Kathi
      Balanced

      Kathi Member Benefactor

      Location:
      NJ/USA
      Tinnitus Since:
      10/30/2013
      Cause of Tinnitus:
      HFHL and stress
      @Martin69--I use audio books and classical music on my iPod. I use it most times at work because it is very quite in the office. White noise seems to irritate my T--blue noise is a little better but I actually prefer the audio books. I'm not sure if that is recommended but I am getting very used to my T and now go very long times with no masking at home. This morning I even did my 3 mile walk without my iPod. I am forgetting my T when I'm interested in the good stories I listen to. Some days are worse than others but nothing is like the first few months--and my life is almost back to normal. Also, a side benefit, I find I actually like listening to books rather than reading them because you can do other things while listening. :) I get my audiobooks and classical music--I love Mozart--at the public library. I download the cd's to iTunes on my pc and then sync them to my iPod. I'm also thinking of joining audible.com as soon as I can figure out how to configure my iTunes to accept it.
       
    9. russiancarl

      russiancarl Member

      @Martin69 May I ask how long it took for you to show improvement with your TRT regimen?

      I feel like the whole TRT regimen is kind of well... it seems more like common sense and less like science? Maybe I'm not understanding it well or didn't listen closely enough in the direct counseling session.

      But I'm supposed to listen to 2-4 hours of this stuff a day direct to ear instead of played on speakers. And that's it? Am I supposed to be doing any breathing exercises or meditations? They were mentioned to me but I'm not sure if those were only for times of stress.

      It seems like this is what most people already do to treat their tinnitus.. mask the sound with more pleasant ones to make it less noticeable. And then google the crap out of it to learn about it. Not sure exactly how this process differs or how it is going to retrain my brain any faster than what I'm doing :/
       
    10. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      When Dr. Nagler was still here, he said I did no do real TRT. I was only in a tinnitus clinic here in Germany for 7 weeks. TRT is for 12-24 months and you have 4 counselling sessions. Also you can contact your TRT counsellor inbetween. During my first months, I was a wreck. They could do with me TRT like crazy. The sound in my head destroyed my life. They had to calm me down with meds and many talks. I was full with anxiety, it was pure horror.

      Now, I am a little bit further, but just a little bit. Panic attacks are more or less gone, anxiety has gone down, but is still there. I go through my day, can work to 80% and function. Suicidal thoughts are more or less gone, although I sometimes could jump from the bridge. But I have wife and kids.

      So I really don't know if this is really an improvement. People say that for severe intrusive T, it can take years to habituate. That is my goal. If i would habituate faster if I speak with a TRT counsellor, I don't know. I think that I know everything I need to know. TRT teaches you that it is all about reaction. DO NOT REACT TO T. That is what I do and I hope my body and brain will follow with habituation. Live yor life as good as you can. Do not react to T. Accept it as sound of your brain and eventually it will fall into the background. It is hard work, it takes time. This is what I was told.

      Regarding meditation, I am not really a friend of those. People say I should do it. I found for me, it is better living my life as I did before and distract with computer games, work, hobbies, family.
       
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    11. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Hi Kathi. Yes, absolutely the same for me. White noise irritates my T. Therefore I gave the WNGs back.
      Unfortunately I still have only very few moments where I am not aware of my T. It still wants all my attention. And this puts me under stress and anxiety. Also, listening the whole day to other sounds (whatever it is) is very exhausting. You want silence.

      But TRT says, you need sound enrichment 24/7. Even during the night where you can retrain your auditory part of the brain (it is still active). But I prefer giving my ear some rest during the night. I will check audible.com. I found no cheap way yet getting all those audio books.

      I also try to have times without sound or masking. The TRT exercise is to listen to T for some seconds, then minutes and then hours and do not react to it. Takes long, it is a long journey for all of us.
       
    12. ampumpkin
      Amused

      ampumpkin Member Benefactor

      Location:
      Montreal
      Tinnitus Since:
      Onset: 12/2007 Increase: 04/2014
      Cause of Tinnitus:
      2007: Meds(Antidepressant) 2014: Meds(Antibiotics)
      @Martin69 your posts are always so touching and sad at the same time... I can still feel your pain throught my computer screen... :(
       
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    13. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Hi Anne-Marie.
      I am not so sad at the moment. Things are a little bit better.
      Like you I have the ultimate will to habituate.
      All the best for you,
      Martin
       
    14. russiancarl

      russiancarl Member

      @Martin69 Oh wow I'm so sorry to hear that yours is so bad and intrusive.

      I'm still not exactly understanding the TRT protocol. Are we just supposed to listen to the sounds as we go about our day or mindfully listen to the sounds and relax while the tinnitus is still there? My doctor gave me some breathing exercises to perform too... not sure if I am supposed to do those from time to time when I have the sound enrichment going or the entire 2-4 hours I'm supposed to wear them.

      I still don't understand the whole habituation thing either. They tried to explain it that they are training your mind to not react negatively to the noise. Does that mean it will subjectively go down in sound too or still be there at the same volume and you just won't care? Both?

      I'm a few days in and haven't done the TRT at all but since the appointment my T has been much less noticeable. It's been manageable for 3 days and I don't know why. The volume seems to have gone down... is that habituation or fluctuation? I have no idea but I"m eagerly awaiting my earbuds to give this therapy a real go.
       
    15. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Yes, unfortunately my T is bad and intrusive. But if you ask people here, more or less everyone says it is bad and intrusive. Most here have the high-pitched tones (since the hearing loss first occurs in the high frequencies) which are difficult to mask. Others say that the low humming is worst for them and they can ignore the high tones. But I am sure, with a mild T which can be masked by everyday sounds, I would have been habituated already. Who knows?

      In my opinion, TRT is a (re)training protocol. It will not reduce your T sound. Nothing can really reduce the sound. You will be trained to understand and learn that T is something your brain makes as a compensation. So it is a sound. And like we become habituated to all or many persistent stimuli, we should become used to T as well. They oftentimes give the refrigerator example in the kitchen, which you only hear when listening to this. They same should happen to T.

      For this, TRT recommends 24/7 sound enrichment, either with WNGs or any other sound. They also recomment meditation practices and make counselling with you.

      At the end, T will probably the same loudness. But since you don't react to it and give it not a second thought (just ignore it), it should become a non-issue in your life. So if you want, you retrain your brain to not listen to it, to ignore it and finally accept it like all the other sounds you hear externally. If it becomes unimportant sound, the brain no longer reacts to it and it falls into the background. In addition, on a regular base, listen to you T and accept it. All the explanations can be found on www.tinnitus.org.

      Trust me, I wish I would be there already. Woke up with loud screaming T (like always). Had to put cricket sounds into my ears to start the day. It is very difficult living and functioning with this.
       
      • Hug Hug x 1
    16. Danza
      Fine

      Danza Member Benefactor

      Location:
      Finland
      Tinnitus Since:
      1/2014
      @Martin69 I have been following your posts. I have been a bit worried about you because of the type of T you have.:sorry: But I am so happy that you are going forward and actually even educated many about the ideas of TRT. Thank YOU! Your determination will bush you to the "other side" over the time. The day you post your success story will be a happy day! :beeranimation: I wish you and your family all the best.

      Danza
       
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    17. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Hello Danza.
      I really like your post. Thank you very much.
      I try to help as good as I can. But trust me. I am still climbing the mountain and for me it is the Mount Everest.
      It is really difficult seeing progress. Maybe I have to remind me more.
      In the beginning, I was staying besides the rail tracks ready to jump.
      Only a call of my wife brought me home. But I don't know if I would really had done the jump.
      I could not sit even a second in my chair, but relentless flight or fight mode. Horror.
      Now, after 10 months, I can work again to 70-80%. As husband, father and friend, I function as a person also to 80%.
      But I have to control me every minute. It still puzzles when people say, T fades into the background. My T is loud, high-pitched and sounds like electrostatic noise in my head. I have no clue how this can fade. But I follow people like Billie48 here and some other guys on the yuku board with intrusive T.
      And people like you and others her help me going through this.
      And, as you said, hopefully one day, I will write my success story here.
      I am working towards this.
      Now I go back working in the garden. :)
      Prayers
       
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    18. Denny

      Denny Member

      Tinnitus Since:
      Jan 2013
      Martin many are in a similar position .
      It is very frustrating but habituation will happen at it's own pace
      But it seems like your brain is becoming hardened to the noise
      This is a big positive though you may not notice it because your
      Focus is still on the noise. I feel like I have not slept in years and
      I have tried everything from herbs to medications to teas.
      Then having to wake up exhausted to another miserable day
      Of this bullshit . There was a member here who had failed at
      Everything and after six years he felt completely 100 percent
      Habituated. That May Seem like a long time but I guess if varies.
      If Beethoven could habituated without any technological marvels
      Of present day then we all can.
       
      • Like Like x 2
    19. Danza
      Fine

      Danza Member Benefactor

      Location:
      Finland
      Tinnitus Since:
      1/2014
      Time will help you! You will get there!

      @Martin69 Good that your wife called when you had it really bad. I am sorry to hear that you have T in your mind every minute, But happy that you can now function in a every day life: you have done giant leap! Well done.

      I know a man here who has lived with a really bad T ( explocion accident in the army) for decades. He demostrated the sound with his phone: IT WAS LOUD. His solution is now that he is on antidep medication (all the time), somebody maybe things that it is no good for you and has side effects etc. But he has come to this conclusion with his doctor. He helps now others with T. He feels better with the meds and lives normal life!
      I hope that everyone find a solution to move on.

      Prayers you @Martin69 and @Denny ! You are in my thoughts!

      Danza
       
      • Like Like x 1
    20. russiancarl

      russiancarl Member

      @Martin69 I'm so sorry you are suffering so much. I think most of us on this message board have had that feeling of wanting to end it all. It really is scary. I know I was there a few years back when my tinnitus went through the roof. This time around I know I'm stronger and can handle it better so hopefully you're on that same type of mindset too.

      May I ask how long you've had it or what caused your T? Have you looked at other treatments? I'm sure you have but I"m curious what has and hasn't worked for you. I brought up other treatments with my doctor when we were discussing the TRT protocol and she didn't seem to think others worked and in fact wasn't all that up to date with what was available or coming down the pipeline. I wonder if this is on purpose though to make me focus on the TRT?

      I'm personally going for blood tests soon just because it can't hurt and I have an appointment with a TMJ specialist on Wednseday. I've always had clicking and popping in my ear and thought it was Eustachian tubes but they ruled it out during the audiogram testing. Other than that I'm going to try some supplements and changing my diet around. I've also heard MDMA quiets tinnitus if only temporarily. I don't know if that kinda stuff is okay to talk to around here but it's something I've considered trying in minor doses.

      I'm still not totally understanding the habituation stuff then. If it only makes my tinnitus sound less annoying to me then why does it *sound* lower now? Is it my T changing then and not the TRT sound therapy helping? So confusing but I guess I should be thankful for the small things in life... like my tinnitus seeming to improve.

      It also seems that I'm not on the typical TRT protocol either. Yet the lady I went to did study under Jastreboff. She seemed to indicate that the treatment has changed since he originally published his work and yet I find nobody else here or on Google that is doing what the doctor has directed me to do. 2-4 hours a day or more as needed, nature sounds or anything pleasing and significantly lower than the tinnitus. She even told me that having it as high as the T or just under showed no more improvement than lower volumes. Yet, I can't find any more info on this!

      Not that I'm doubting her at all and I am following it to the letter but I'm just curious about it. I went to a fairly reputable place, one of the best in my state and ranked in the Top 50 ENT clinics in the USA by US News.
       
    21. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Either your tone is lower or you habituate to it. People say that when you habituate/getting used to it, it becomes lower. TRT sound therapy does not lower Tinnitus, only your reaction to it.
      So if it went down, be lucky. If you start habituating, also be lucky.

      The thing is that there will be a time your brain classifies your T as a neutral stimuli (at least that's the theory and this happens for many people). So it is that your brain has heard it now long enough and knowing it does not hurt or kill you, it will classify it neutral and pays no more attention to it.

      I myself am not looking for any other treatments (diets, acupuncture etc.). If you are here on the board long enough, you will learn there is no cure and all treatments are to manage T and getting used to it.

      The TRT protocol says that the sounds should be set lower than your T. Because you cannot habituate to something you do not hear.
       

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