Tinnitus Retraining Therapy

Charlatans of the modern day!

 

Hi bobvann,
Yes I am the same Christopher.
I wish you good luck with your trial.

 

OK, welcome, you will find more open and varied and realistic point of views on here. Not simply that you will habituate within a few years and that's all there is. I wish it were the case.

 

Thank you. I look forward to the new perspective Tinnitus Talk will provide. I do wish you good luck with your TRT trial. In general, trying to mentally process how to manage tinnitus has been challenging. The mental part is the worst. Your mind just plays with you.

The mind is a time traveler that kidnaps you for the ride. It will force you to the past and future whether you want to or not. Oh it is quite the day planner. It takes a conscious effort to stop the ride and redirect it to where you want to be, I am trying to stop being the passenger and instead the driver. It’s the ultimate mind over matter. The industry that supposed up to helping us appears to be helping themselves by profiting off of our misery. I truly pray you have a much better experience with TRT. God Bless You. Peace.

 

As I keep saying, snake oilists. The only honest ones are GPs and ENTs. Here you can express yourself. Not everyone will agree but you will not get chastised for it.

 

You used the right word earlier; charlatans. I feel like I paid for TRT to be part of an ongoing experiment. I felt the answers to my questions were random, off the top of the head, and baseless. Not a comfortable feeling when you have broadband noise barreling down your ears for 8 hours a day. Can I make TRT sound any more inviting. LOL. What upsets me is these very doctors pedal you with smiles and promises to win you over to buy white noise generators, then go home for a relaxing evening while we are home fighting to maintain our sanity and lives. I wish those who hold the purse strings would see the magnitude of damage caused by tinnitus daily and put more money into viable research to stop the agony. God Bless. Peace.

 

That sounds terrible. But I'm sure they would never take any responsibility for it.

I wouldn't consider myself a success story and maybe never will be, but I'm as close to normal most of the time as I've been since it started. Listening to low volume classical and chill/electronic music has been much more beneficial than broadband noise. Listening to R. David Case's Tinnitus Mix at low volume via speakers helped too, but it's not something I would recommend. Who knows if it is safe, or would benefit everyone. Definitely would not be listening via headphones during sleep that is for sure. I had already overcome loudness hyperacusis and been improving with lingering sound sensitivities – not in the acute phase where your ears feel raw.

 

@Gman

It is terrible. No, they will not take responsibility. But they take your money. I consider you a success story for taking charge of your life and devising a protocol that works for you. You sharing your experience to others is a testament to classifying you as a SUCCESS STORY. There are folks right now who are too weak physically and mentally to even consider viewing this forum because of tinnitus. You and I are blessed to have the strength today to view and post. So, yes you are a success story. Gman thank you for your invaluable dialogue and for sharing what makes you a success story. God Bless Peace. Keep keeping on!! In other word keeping doing what you are doing! Peace.

 

I see pink noise is an option for some. Any with brown or violet noise? Not sure why this archaic technology that’s so expensive should not be capable of such programming.

 

You can via apps & Bluetooth.

 

@bobvann
I’ve not used the white noise generators for 3 days. Each night the tinnitus is lower. This morning it has been 3 hours of almost silence. The question: is this the result of not using them for 3 days or is it from wearing the pink noise generators for almost 6 months? I do not know. God Bless. Peace.

 

I don't know. i never really used them long term. Perhaps it is the result of giving them a rest. That is advice Michael Leigh has given. If they bug you, put them on for a while, then remove them & so on. That will be my strategy. Either way this is great! Hope it holds up.

My fitting is tomorrow! At this point taking the edge off would be a win.

 

@bobvann

It might be that it’s the result of not wearing the white noise generators for 3 days. I really needed to give my ears a break. It’s maddening if you don’t take a break. Thank you for the advice. Yes, it is great. Although I notice no matter what they go up every evening. But tonight not as much.

I truly hope your fitting goes very well. I pray you can get relief from them as well as long term. I am here if you need someone to confirm what you are feeling and hearing. You know I know first hand. My interest is that we ALL get well soon. Again, thank you for the advice. God Bless. Peace.

 

Thanks man.

 

@bobvann

How are you feeling with the generators? I hope all is well. God Bless. Peace.

 

@Michael Leigh,

I’m interested in hearing about your experience with TRT as I’ve read you have had success with it multiple times. If you could PM me that would be great. Started a “mini” TRT program four weeks ago at the recommendation of a tinnitus specialist in Southern California and I’m starting to have questions about it. Just want to see how your experience might stack up to mine.

And if anyone else has had a POSITIVE experience with TRT, please tell me about it here!

 

HI @emily-anne

I have just seen your post by chance and didn't receive an alert message. The reason for this could be because you added a comma after my name: Michael Leigh,

I will send you a PM tomorrow if that's okay giving details of my treatment that it's getting late here. For TRT to work it should follow a strict protocol and treatment can last for up to 2 years. Please click on the links below and read my articles. As I said I will send you a PM tomorrow.

All the best
Michael

https://www.tinnitustalk.com/threads/trt-as-i-see-it.19555/
https://www.tinnitustalk.com/threads/what-is-trt-and-when-should-it-be-started.19024/
https://www.tinnitustalk.com/threads/what-happens-in-trt-sessions.18195/

 

Where is my response?

 

The Audiologist was nice. She took 90 minutes to program some sounds to make sure they are not too loud or too harsh. My hearing has declined some more. So far it's ok. We will see. I got the adapter to play via Bluetooth so I have a wide range of sounds.

 

The fact that they devoted 90 minutes to program them is a very positive sign. My audiologist took maybe 20 minutes. Which is troubling given the importance of proper set-up.

You got an adapter to play Bluetooth with generators? Really. You can use other sounds and possibly apps with generators? If so, like what? Are they comfortable in your ears? How long do you have to wear them each day?

I am sorry about the decline in hearing but you said it’s ok so far. Good.

I am happy for you. Will be throwing prayers up for you. Looking forward to your response. Please keep me updated. God Bless You. Peace.

 

I am not surprised in regards to hearing loss. Explains why tinnitus had become more of a nuisance.

Yes with the Bluetooth adapter I can play ANYTHING from my phone, sound apps, converted videos to mp3 from YouTube, you name it. Endless possibilities.

They usually have a $225.00 fee if one returns them after 90 days but they waived it for me. I can really take my time and see. I also get appointments by weekly at first, then monthly to make changes or adjustments, which is all included with the price of the device. I wear them as long as they are not bothersome. If they are bothersome, I turn them off for a bit and then put back on.

 

@bobvann
That’s amazing that you can play anything into the devices. They sound very customer friendly. That’s great. Sounds like you have no restrictions on sounds. I was limited to either white or pink noise. No other sounds.

Who makes the generators? Can you adjust the level of the sound? I like that you can wear them as long as you think they are not bothersome. I know you are hopeful as I am for you. God Bless You. Peace.

 

For the make, check my post in the Hearing Aids thread.

Yes, the sounds and levels are totally adjustable. I have a custom white noise notched to my hearing and soft red noise. I am probably going to have it augmented a bit because it is really low in real life settings. I think she did this due to the concerns I had brought up from my past experience. I also discussed all that I have learned in my time on the subject. She also programmed my missing notch.

 

@bobvann

Thank you for giving me the title although I have never considered myself to be King of TRT. I have had the treatment twice and believe I have sufficient knowledge and experience with it and to be able to advise people on the best way forward, should they wish to try it.

If you have got your white noise generators and started treatment with your Therapist? My advice to you is to stop discussing TRT on this forum and other tinnitus forums, including social media platforms such as Facebook. Keep away from people that have never tried it or have a negative bias towards TRT. I also advise that you do not read negative posts about tinnitus treatments not being effective and from members whose only contribution to a forum, is to post reports and studies on TRT, that are likely to have been written, by people that have never experienced tinnitus and if they have it's probably mild.

Most of these reports are written by medical professionals who are physicians that know about the anatomy of the: Ear, Nose and Throat. They are able to treat underlying medical conditions affecting these organs. Either medically or surgically and I believe, most will try to do this to the best of their ability. However, they are not tinnitus specialists and the majority of them have never experienced tinnitus at least not to the degree that many people that visit this forum regularly have.

If you choose not to follow my advice and continue to discuss TRT, I believe you are putting extra pressure and expectations on yourself. If these expectations are not realized in the timeframe that you expect, then you are not likely to do well with TRT. Keep away from the forum and get a long with your life by engaging in positive things that you like to do. This is the way forward.

If you find it difficult to keep away from this forum or any other then I advise that you stop discussing TRT, counselling and white noise generators.

I wish you well.
Michael

 

I did start the sound therapy with a pretty very nice 31-year-old audiologist. The only thing with em youngin's she did not know the name Pawel Jastreboff which was amusing. As mentioned elsewhere I can also use Bluetooth to play any sounds from my phone.

She spent almost 4 hours on my 1st appointment. Took her time to adjust levels and programmed a few sounds along with the notches dropped in my hearing. So far I am unfortunately having the same reaction I did prior. I started 2 days ago and slept less than 2 hours in 2 nights.

I am doing as you recommended, having them on & off to get used to them. Having said that I will give them a chance. If I do decide to carry on past the 3 month trial, it would be affordable since my wife is getting a plan at work, and combined with mine it would cover a decent portion of the device.

Interestingly enough she will have CBT AND Psychologist, audiology coverage. Therefore I can prolly find someone to do the Counselling. I already did CBT. Even if the device was cheap, if it is not going to help, I will forgo it.

The 1st time I tried WNGs I was not on any online forums. I will make my mind for what is suitable according to how I respond. Not everything works for everybody. Case and point TRT, CBT, Lenire, supplements, etc...

 

@bobvann

The advice I have given you is the same that I tell to anyone, that asks me on what I believe to be the best way forward when having tinnitus treatment. Whether you choose to follow it is up to you. I believe anyone having tinnitus treatment should keep away from tinnitus forums. Reading posts and corresponding with people tends to make one focus more on their own tinnitus. This can delay or prevent a person habituating especially when reading negative comments about tinnitus treatments. By keeping away from forums and engaging in other more positive things that you like to do, frees the mind. The fixation with tinnitus over time will become less and allow treatment to work. I have often said tinnitus is 90% mental and I stand by this, because it is intrinsically linked to our mental and emotional wellbeing.

My hyperacusis was completely cured in 2 years wearing white noise generators 10hrs a day. In the morning the white noise was set slightly below the tinnitus and left them alone. I was sensitive to them at first so gradually increased the wearing time as previously described until I was able to wear them all day. I engaged in positive things and kept to regular counselling appointments with my Hearing Therapist.

Counselling and using white noise generators can help a lot, but a person also has to try and help themselves. This means, reinforcing positivity by engaging in things that you like doing to help take the mind off tinnitus.

Michael

 

My old community used to say the same thing in regards to forum activity.

To be honest with you I have learned a lot on forums. One has to decide what is good what is bad. I was having a hard time for the 18 months prior to joining any kind of support but I know what you are trying to say.

I like drumming, that's what I want to get back to. I think it may be possible.

 

Unfortunately I do not think so. I believe if you go back to drumming you will make your tinnitus worse. I do not agree with the people at the other tinnitus forum, that told you habituation means you can carrying on doing everything as you did before the onset of tinnitus. This belief is true but only up to a point. Anyone that has Noise induced tinnitus, and returns to using headphones is asking for trouble and if they do something like you intend on doing: playing drums or playing in band where the ears are going to be subjected to loud music (even when wearing earplugs) they are playing Russian roulette with their health.

Sorry to sound so sobering but please remember, I did warn you of the risks.

Michael

 

There is also e-drums with volume control...Through an amp, not headphones...

There is a warning in my device manual about prolonged use or volume that can worsen tinnitus.

 

Spot on Michael.

As you know - I had a lifelong professional career in jazz - I loved my life - I lived to create music.
But if the chips represent the rest of one’s life - then one has to reluctantly walk away, I feel.

I occasionally replay my videos, LPs, CDs, to remind myself of my achievements.