Tinnitus Retraining Therapy

Hi bobvann,

Your Audiologist may be a registered and certified hearing therapist and following the TRT protocol to the letter. However, I do wonder after reading your post whether this person understands tinnitus the way I and others in this forum do because I very much doubt it. The use of bone conduction headphones I vehemently disagree with as they can cause more harm than good, for reasons I have mentioned in many of my posts to this forum. White noise generators are the correct devices to use.

I do not believe it is a good idea for you to play drums again and wish you every success with your treatment.

Take care
Michael

 

I know. This is why I am reluctant to post...

I vote to rename the site Micheal Leigh's TT

 

Hi.

I was searching a lot on the internet about TRT and found many studies about effectiveness on TRT and I have mixed opinion from this. I found one study that said TRT is no more effective than placebo.

I know that TRT is very controversial therapy. People hate it because it is expensive, it takes a looong time and also it doesn't solve the root of the problem, the tinnitus itself and instead tries to make people get used to it and opinions are that it minimalizes the problem, because it pushes the "it's all in your brain" agenda that ultimately slows down serious tinnitus cure research because scientists focus on habituation studies instead.

But I still think TRT is more than ordinary CBT sessions. They actually give you a device in your ear that make noises that work on subconscious level. I also found several studies that say that TRT is an effective treatment, with efficacy at 80%. Although it may take up to 2 years to finish the therapy, sources say that people in the studies saw improvement in just a month after starting the therapy. And most of them got drastically better at six month mark. It seems very promising to me.

However, there is just one more catch that seems to be overlooked by everyone except me. Nobody talks about potential damage to your ears, therefore potential worsening to your tinnitus, caused by long-term listening to white noise generators. Michael Leigh says that even listening at low volume to your headphones can cause permanent tinnitus.

Therefore, how do tinnitus maskers differ from headphones and how does music differ to white noise? I ask this seriously because I got massive tinnitus after listening to headphones at lowest volume for one day. Of course, I am not certain this was the cause of my tinnitus, but I cannot disprove that.

So, I still try to find cause of my tinnitus and try to at least decrease it, because it is certainly not possible to live like this. But if everything fails, TRT seems like the worst, but most successful solution. I don't want to end up doing TRT as I know it does not fix the tinnitus itself, it costs a lot, takes a long time, causes social problems (can't imagine myself, a 19-year-old guy going into public with hearing aids), not sure if it fixes dysacusis, ear fullness etc.

However, current state of my tinnitus is catastrophic and if everything fails, I will probably pursue the TRT route. I will report how it will feel like if I start doing it.

 

I have never said what you have written. I don't mind you or anyone else quoting what I say but please quote accurately.

Thank you,
Michael

 

TRT costs $4,000. If Jastreboff and those he teaches this treatment to were serious about helping people, they wouldn’t charge $4,000 for it.

 

Most medical treatment is expensive. Even a consultation with a medical professional is expensive. TRT done correctly following its protocol takes 2 years, requiring regular counselling with a tinnitus therapist.

 

I'm not paying someone $4,000 to tell me that a sound can't hurt me and then have no improvement in my symptoms. TRT doesn't make the sound go away or lessen in volume. I could buy white noise generators for a fraction of the price and hire my own CBT therapist to do the same.

Is Jastreboff even a tinnitus sufferer?

 

I live in the EU and I saw the noiser costing here €150 EUR for one ear, so €300 EUR for both ears, so it doesn't look that bad. The health care is mostly free here in Europe. Not sure but I think insurance companies can cover it fully under certain circumstances. If it will be a question of few hundred bucks, then I will pay and go for it. But if it will costs thousands of dollars, then not (but if there was a cure with 100% efficacy, then surely I would get indebted for life to get it, sadly TRT isn't worth it).

However, I am so sad for you Americans that you have pay so much for everything... For example, here in the EU doctors send patients to CT, MRI etc very often and I can't imagine they would want patients to pay €1000 EUR for one MRI scan lol. It's completely free here. Everything, even the doctor visits. For example, I have been visiting a physiotherapist and didn't pay a single cent. And it didn't help me a single bit. So I know it must be super frustrating for you to pay for things that may not even help.

I don't know about TRT though. The opinion that it is expensive is mainly because it is US-based therapy and there aren't many doctors who provide TRT in Europe. So I am not sure how much it costs here. It really depends whether the insurance companies consider it a valid therapy. They don't pay for snake oil.

Well, I read your comments again and I understood that it cannot cause tinnitus but it can permanently exacerbate already existing tinnitus. However, I think that majority of people, if they were in soundproof room, would hear some tinnitus. So basically my paraphrase is not much different.

 

That is entirely your choice. I am not here to duel with you for I have had TRT twice and know that it works when done correctly and one isn't looking for unrealistic results.

I wish you well.
Michael

 

It is a shame you are not more polite and willing to learn from people that know more than you about tinnitus. You are in the very early stages of the condition and doing everything wrong.

 

@Michael Leigh, I have two completely genuine questions.

Can you please clarify how the white noise generators might successfully treat the tinnitus, while other forms of headphone usage, even at low volumes, is harmful?

It seems contradictory to me but I think I'm missing something and I sincerely want your opinion. Does it have something to do with the variability of music's intensity and volume? Do you believe white noise truly has therapeutic qualities that music won't?

Also, why do you think someone shouldn't start TRT inside of 6 months of onset (if I'm misquoting you, feel free to correct me for the record)?

To clarify - I have not started TRT although my audiologist encourages me to use the therapy apps (like Relax Melodies) on over-ear headphones for a couple of hours a day at low volume.

Thank you in advance and I hope this is an ok thread to pose these questions. They are things I've been thinking about often.

 

White noise generators will help treat tinnitus, and hyperacusis if it is present. The white noise should be set slightly below the tinnitus. Over time the brain habituates to the white noise and slowly pushes the tinnitus into the background making it less noticeable. Ideally, white noise generators (sound therapy) should be used alongside counselling as part of TRT for best results. White noise generators will also help to desensitize the auditory system if a person has hyperacusis. Please read posts on TRT on my started threads for more information.

My advice not to use headphones even at low volume is for people that have noise-induced tinnitus. I began corresponding and counselling people some years ago with this type of tinnitus. Many of them that habituated noticed their tinnitus increased after a while. I learned they returned to using headphones even at low volume. It is my belief, after a person has recovered from noise trauma the auditory system is not quite the same as before. It is more sensitive to sound and I'm not referring to hyperacusis. Some people with noise-induced tinnitus use headphones and are not adversely affected but many are. It is up to the individual but remember, should the tinnitus increase or spike due to using headphones it might not reduce to its previous baseline level. Please type headphones in the search box at the top of this page and read the posts.

Music has syncopation so it's constantly changing in pitch, rhythm and timbre even at low volume. In the confines of the ear canal, the sound waves have no other place to go than to push against the eardrum. The white noise that's emitted from a white noise generator is smooth and regulated. The sound it emits, is from a small aperture in a plastic tube that wraps around the back of the ear and enters the ear canal. By contrast, a headphone or earbud uses a much larger diaphragm/speaker that generates and pushes air into the ear canal.

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 6 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 six months should elapse before starting a long-term treatment such as TRT.

If you want to follow the advice of your Audiologist and use over-ear headphones, two hours a day playing relaxing melodies, that is your choice but please note the following. A few years ago someone contacted me by telephone in a lot of distress, as her tinnitus and hyperacusis increased after listening to relaxing music at low levels on the advice of her Audiologist who believed it will help reduce the tinnitus and hyperacusis.

I correspond with a few Audiologists that have tinnitus and they do not advise their tinnitus patients to use headphones.

All the best,
Michael

 

I know you are hedging your bets a bit saying 'do what you want' but I think your advice can be dangerous.

You are using purely anecdotal evidence to tell people in a fragile emotional state not to listen to music (ever again) on headphones.

You also tried to tell me despite the advice of my ENT (who is an expert on tinnitus in my area) that despite her telling me that my tinnitus (in your estimation) was not caused by hearing damage or headphone use, that it was in fact caused by that because I am a musician.

That sent me for an emotional tailspin for a week.

I believed what you said for no other reason than you said it without much afterthought. I met another ENT at Penn Medicine and they told me your advice was nonsense. It can be dangerous to subject people to a: believe the doctor, or believe the person on the forum scenario. You are dealing with possibly suicidal people. Please be more careful.

Telling people that can't listen to music on headphones can be emotionally traumatic for people that have a close connection to music. If you want to get into the my audiologist vs your audiologist debate, we could be here all night.

Anecdotally I have musician friends that have tinnitus that play huge festivals and have not had any spikes in their tinnitus. Anecdotally I have friends that have tinnitus that listen to music on headphones 6 hours a day and have no increase in tinnitus. I know you are coming from a place of love. I genuinely believe that you are, otherwise why would you be here. I know you probably help a lot of people too and I respect and laud that, but I do not think you should be asserting your opinion without a much bigger asterisk. People are raw, emotionally vulnerable, and very malleable when they come in there, please be very careful with your language. Language is important.

Respect,
Ben

 

You do not know me because if you did then you would know that I am not one for hedging bets.

My advice not to use headphones is strictly for people that have noise-induced tinnitus. On your profile it reads tinnitus caused by Stress, TMJ, Neck. Therefore, since your tinnitus was not noise induced you know nothing about the condition. If memory serves me correctly you didn't agree with the advice your ENT doctor gave you and was asking for opinions from members of this forum and I gave it and stand by it. The advice I give to people is just that, advice, and is not absolute and mentioned this in many of my posts. A person is free to make their own decisions whether they wish to use headphones or not.

You came to this forum asking for help and I gave it. Your ENT doctor, the one that you didn't agree with, is now an expert on tinnitus and I beg to differ. Your doctor knows so much about the condition, why on earth are you here asking for help with it?

Please note this: most ENT doctors know very little about tinnitus as this is not their area of expertise. They are physicians, not tinnitus specialists. They treat underlying medical problems that cause tinnitus but they do not treat tinnitus. Most of them have never experienced tinnitus. Those that have it's probably mild and nothing like some of the people in this forum that have it severe.

If your tinnitus is not noise induced then I am pleased for you. Continue using headphones and playing music until your heart content. Again, I give advice which is not absolute.

Are you so fickle that my advice sent you into a tailspin? I am not sorry for the advice I gave you. If you only want people to tell you what you want to hear, then I suggest that you stay away from this forum. Please remember you came here asking for help.

The ENT that told you my advice is nonsense is entitled to his or her opinion. Since the majority of them know nothing about tinnitus, that's all I will say on the matter. I will continue to advise people that ask for my help because it is based on many years of experience with noise-induced tinnitus unlike the ENT doctors that you ran to telling tales about me. They have no clue how debilitating tinnitus can be and they way it can affect a person's mental and emotional well-being. Remember, they are physicians and treat underlying medical problems within the auditory system that cause tinnitus.

I have never told people they can't listen to music through headphones. I give advice to people that have noise induced tinnitus. They are free to make their own decisions as most people will eventually do what they want to do.

You are free to do as your musician friends do. Since you are surrounded by well-informed people outside of this forum and according to you tinnitus experts, I am aghast as to why you are here. I will continue to do as I have been doing and that is to advise people that ask for my help on tinnitus.

Goodbye and I wish you well. I will not be commenting further.

Michael

 

I'm sorry to be a bit rude here, but the thing is that you tell almost everyone they have noise-induced tinnitus. What is it good for? The last thing that someone wants to hear is that their tinnitus is induced by their own preventable action.

As far as I know there are a lot of possible causes of tinnitus including spine, neck, ETD, blood insufficiency issues that are often very treatable and I don't know why is it good to scare people telling them that their tinnitus exacerbated just because they used headphones once at that time. It might be completely unrelated.

Also, noise-induced tinnitus doesn't seem that common at all. No doctor I've been to asked me if I was at a concert or if I used headphones. What's my point is that if someone gets tinnitus, it is very likely either something treatable or it is idiopathic rather than noise-induced. The fact that someone uses/used headphones is not very relevant, as I would say vast majority of young people use headphones. It's the same as saying that someone got a flu because he breathes air. Of course, there is still a chance but there are different factors that contribute to the onset.

 

TRT is akin to having a headache, and taking a baseball bat to your head expecting the headache to go away?

 

When I correspond with someone that is asking for help, I am trying to determine the cause of their tinnitus because something usually causes it. Exposure to loud noise is one of the most common causes. Look it up online. I ask if the person regularly uses headphones, earbuds or headsest? Do they play music in a band? I follow this up by asking if they attend clubs, concerts or work in a noisy environment. Sometimes people use firearms on a shooting range which can also cause tinnitus.

If the person hasn't been exposed to loud noise, an underlying medical condition within the auditory system including an ear infection or build-up of wax can be responsible for its onset. If it is none of these things, then stress and medication is something to consider and should be investigated. The best way to help someone is to try and find out what originally caused the tinnitus. There are many people in this forum that got their tinnitus due to exposure to loud noise. You and others may not like to hear it but headphones and earbuds are at the top of the list.

I am asking that you do not alert me anymore. From experience I know that you are a troublemaker but I wanted to give you the benefit of the doubt. You are also someone that believes they know all about tinnitus, which you have had for just about five minutes. This is confirmed in your recent post, telling your ENT doctor that you have dysacusis symptoms and then saying he had no idea what you were talking about. You go to a medical professional for help and telling him his job, that's a great way to start. It is clear that you do not need any help from me, so I wish you well and goodbye.

Michael

 

Pawel Jastreboff on Tinnitus Retraining...

Go to 5:21.

 

Mhmhm, two TRT specialist told me "it most likely won't work for you."

Because of the dozen tinnitus sounds, fleeting tinnitus, reactive tinnitus, hourly different combinations and loudness of my sounds and hearing loss etc. Because it's so fluctuating every hour or even minutes. Sometimes I have only 4-5 sounds, sometimes 9+, constant ones, intermittent ones coming and going... Moments where it feels like hearing falls out for a second etc. Lots of stuff. Lately Exploding Head Syndrome. I never stop getting new shit.

I wish I had my mild unilateral ringing from the first 8 years. But it got worse and worse, and is still getting worse. I got used to it after couple of days and never thought about it for those 8 years. Good times back then. Now I'm 17 years in, so don't tell me it will get better over time It won't.

At least they were honest.

And yes, I tried TRT anyway, but they were right. It didn't to anything at all.

 

I love my German healthcare.

 

2 years ago I went to a stationary tinnitus clinic for 6 weeks where they did all kinds of CBT, ACT, mindfulness, noiser, TRT, talk therapy. Even sport therapy and all kinds of ENT tests. It was fully covered by the German health insurance (about €40k). Btw. this has helped me 0! It was like class trip at the end.

 

What is the cause of your tinnitus?

 

3 times SSNHL. Now moderate-severe permanent hearing loss in both ears.

 

Yep, tried it too. Fully paid.

Actually I go every two years for a 3-6 week rehab for other health issues. Fully covered.

 

Your hearing just went away for no reason? Did the audiologist measure hearing loss?

 

LOL, that's what's sudden hearing loss exactly does.

Of course he did, at my first one, bilateral, high frequencies are gone, and high is everything above 3-4 kHz, a loss of 70-90 dB both sides. Never came back and I did Prednisone IVs started the same day.

Second one my left ear was completely deaf, some came back luckily but worse than it already was. Third time a little one left, never got better, again. Every time corticosteroids treatment started on the same day. Tinnitus got wore every time. Though, I hadn't SSNHL since 7 years but still my tinnitus got worse and worse and still does.

I'm always wondering how many on this forum claim not to have hearing loss, considered 2/3 should have. I mean not a tiny one of 5-10 dB or "hidden hearing loss' or above 10-12 kHz.

Those without hearing loss are lucky though, I know severe tinnitus is possible without hearing loss, no doubt, but with hearing loss it sucks even more, especially if you had sudden hearing loss, you're always on high alert, every fleeting tinnitus or whatnot triggers anxiety about more hearing loss etc.

 

SSHL is no joke. I’ve had just one episode and am still freaked out about it. I had 3 days of steroid shots starting on day one. I regained 60% of my hearing but my word recognition is at 12%. I now wear hearing aids in both ears.

Tinnitus does whatever the hell it wants. Nothing helps it, but some things make it worse.

 

I couldn't have described this any better.

For 7.5 years I have kept a journal/log of my tinnitus intensity in an effort to discover what may reduce it, and it has been as futile as attempting to predict the winning lotto numbers by recording and reviewing previous ones. I have never encountered a condition that is so bafflingly resistant to virtually any treatment, method, drugs, etc.

My worst all-time spike was on Xmas Eve 2019 (which lets you know how this can without warning destroy any semblance of enjoyment); as someone else on this Forum said, "Even on the holidays tinnitus is a hard working son-of-a-bitch."

 

I kept a journal too, recently. Every day for maybe a year. I couldn't find any pattern at all. It was a lot of work though, because my sounds change every hour, sometimes every few minutes. In intensity, combinations, some come and go, then those fleeting tinnitus episodes and whatnot.

I want my tinnitus from the first 8 years back, that was a piece of cake.

 

Hi @Michael Leigh.

I am considering doing sound therapy if my hyperacusis doesn’t fade in the upcoming 6 months. Just wanted to clarify you had pain hyperacusis and you recommend it for this variant of it.