Tinnitus Retraining Therapy

You and I have discussed this before. The belief that once a person habituates to noise induced tinnitus, they can return to using headphones and play musical instruments as they did before their noise trauma is often not the case. No doubt there are some people that can do this but there is a risk of the tinnitus becoming worse and often it does. I also don't agree with the belief that true habituation means a person will never hear their tinnitus nor will they ever be troubled by it. Habituation means to live with. So one learns to live with their tinnitus and with all it's idiosyncrasies and each person's will be unique to them. Mine is variable tinnitus and completely random: Silent, mild, moderate, severe and very severe.

Michael

 

I agree there is no steady pattern. Perhaps I am more habituated than I think since it goes though all those phases for me as well...

 

You probably have habituated to the tinnitus but you are still having problems with sound sensitivity (hyperacusis). As I have said many times in this forum, a person can habituate to tinnitus but if the hyperacusis doesn't improve naturally or with self help then professional help should be sought. If the hyperacusis isn't treated over sensitivity to sound will be a continuing problem which can result in tinnitus spikes....

 

I'm starting sound therapy on Wednesday. I know that there are mixed views on TRT in the tinnitus community, but I want to give it a try, especially since I'm new to drug induced tinnitus and I'm struggling to habituate.

 

TRT requires the wearing of white noise generators for sound therapy and having regular counselling with a tinnitus therapist. Treatment lasts up to two years. If your TRT isn't as I have mentioned then it is not proper TRT. Because there are mixed views on tinnitus treatment, my advice is to try and keep away from forums and if you can't not to discuss your treatment in them, because of negative comments from some people that believe they don't work. These comments can adversely affect your progress.

Best of luck.
Michael

 

Isn't TRT really just snake oil? Is there any evidence to back it up? Anything that takes a year or more to work sounds very suspicious to me. How on earth are you supposed to know if the TRT worked or if things would have got better on its own? Over the past 9 months I've gone from I'll try anything to help to I guess I can live with this.

 

TRT is not snake oil. I have had it twice and I'm living proof that is works when administered properly and a person is prepared to make the effort to help themselves. Some people expect TRT to cure tinnitus which it doesn't. Some people expect TRT to do all the work and they sit back and relax and do nothing, therefore it wont work. Some people have so called TRT when it is nothing of the kind and it will not work. Many people that say TRT is snake oil have never tried it, and if you start any tinnitus treatment with this type of negative mindset then it will never work.

Michael

 

I've had TRT. It was free on our NHS. My experience:

People scrutinize it as a Tinnitus treatment or a cure, but it doesn't treat or cure Tinnitus -- it treats the anxiety and depression that Tinnitus sometimes causes. This in turn can improve your perception of the Tinnitus, and/or your ability to live with it.

It takes a long time because therapy does take a long time -- you are learning to treat your depression and anxiety without the help of any drugs etc.

In my opinion you can go into it with any kind of attitude you want, as long as you are prepared to give it a chance at some point. Many are skeptical when they first go into therapy.

It's not much different to having regular counselling like CBT, except that you are talking to someone who somewhat understands Tinnitus, as opposed a regular counselor who may not have heard of it. Also, you may be prescribed WNG's, which can be useful for those with noise sensitivity/Hyperacusis or those who need distraction from their Tinnitus.

Please remember that everyone is different, so just because it didn't help someone else doesn't mean it won't help you, and vice versa. I personally didn't keep it up because I decided on regular counselling instead (I have other health problems).

Does it replace a cure or treatment: No, of course not.
Is it worth it:
If it's free, why not? Opting to have TRT will not prevent researchers from looking for a cure, so please don't put that pressure on yourself.
If you have to pay, that depends on what you can afford. If you're suicidal/having a hard time with your Tinnitus, you should definitely be speaking to some kind of mental health professional regardless, so if it's cheaper, see a regular therapist instead.

 

Interesting insight - I have been offered treatment on the NHS too consisting of CBT and sound therapy. I have decided not to opt for the sound therapy especially since my hyperacusis has improved tremendously so my attitude now is sort of 'if it's not broken don't break it'. I think the CBT and psychological treatment could definitely be helpful in managing the anxiety side of things - especially since it's free so I might as well. I do feel though that I have a pretty good handle on how to manage my condition, at least the physical side of things what sounds trigger it etc, how much noise my ears can handle.

 

HI @Rjbookworm

If you are visiting this thread again, I hope you now see the reason I advised you to keep away from tinnitus forums when having treatments such as TRT or any other and not to discuss it in them, because of negative comments that can affect your progress or stop it all together. I am not referring to you @Tanni

Michael

 

If this is a reference to me, I hardly made a disparaging comment about TRT... My hyperacusis is practically gone now hence why I won't be doing sound therapy and I am keen to try out the CBT/psychological treatment to see how that helps me.

 

As I mentioned, I stopped TRT due to the WNGs aggravating my hyperacusis rather than calming it down. I did do 8 weeks of MCBT last year as well.

 

Out of curiosity I entered "TRT in the Chicago Area" and I got only one practitioner who is located in our North Shore Suburbs of Lake Forest and Highland Park. The outlet actually mentioned that their methods were taken from Jastreboff.

These two suburbs are as out-of-sight wealthy as you can get, not to mention hard to get to as well. (I recalled that Tom Buchanan from "The Great Gatsby" came from Lake Forest).

Just to fact find I might call them and inquire about their total estimated cost for TRT. If it is supposed to go on for, let's say, as much as two years, I'd better be sitting down when I am quoted the price.

 

I agree -- if you've decided to go in for a therapy of any kind, do not spend time reading about how it won't work. Of course it hasn't worked for everyone, but that does not mean it won't work for you.

 

I visit a number of forums some better than others. Unfortunately, some people particularly those new to tinnitus, don't stay because of negativity.

 

You have had tinnitus for six years which is enough time to habituate to it. If it has become worse is this the reason you're thinking about trying TRT?

 

I did find it useful speaking to a therapist who has Tinnitus and knows something about the condition -- the frustrating part of speaking to my regular therapist is that I spend a lot of time advising her . And it's so difficult to explain it to someone who doesn't have it and hasn't really heard of it.

I will say it can be hit and miss who you get though -- I had one who was good, and one not so good, same as with a regular therapist I suppose.

Good luck, let us know how you get on!

 

For the record I wasn't referring to you either but did notice you Agreed with a poster that said TRT is Snake oil. You are entitled to do that as anyone else. Please keep in mind, managing and learning to cope with tinnitus is all about one's mental and emotional attitude towards the condition and incorporating positivity into your life. Veterans and those seasoned to tinnitus know this and they take time to acquire. The process will be different for each person. However, if negativity towards tinnitus and treatments takes hold, they will find habituation and acceptance a struggle.

Michael

 

I do think that for some types of hyperacusis (delayed nerve pain type) I would feel a bit more hesitant about undergoing sound therapy - in my own case, since I have reached a point where I am significantly recovered I'm not sure if it'd be worth it for me. However, I can definitely see the value in seeking some kind of treatment - for me, accessing CBT/psychological treatment so I can cope better with future spikes (should this happen) and learning coping strategies!

 

My opinion on tinnitus and hyperacusis you may or may not find helpful. The same applies to anyone else reading this post that has noise induced tinnitus. Twenty four years ago when I first got tinnitus due to headphone use I had severe tinnitus with very severe and painful hyperacusis. I had TRT for 2 years and wore white noise generators for up to 10hrs a day and used a sound machine at night for sound enrichment. I also had regular counselling with a Hearing therapist for the duration of treatment. After 2 years the hyperacusis was completely cured and still remains this way. I haven't had a tinnitus spike since then. My tinnitus did increase in 2008 after a second noise trauma that I have written about in my post: My experience with tinnitus, which is on my "started threads". I had TRT again and it took 4 years to habituate for the 2nd time. The hyperacusis did not return.

Hyperacusis comes in different levels of severity and I am referring to hyperacusis that is brought on by Noise trauma. Whether one experiences pain with it or more milder symptoms that can still cause discomfort it is all the same: Hyperacusis. The condition can improve by itself over time without having to have specialist treatment that requires wearing white noise generators and preferably having counselling also. I have explained this fully and in more detail in my post: Hyperacusis, As I see it, available on my "started threads" Please be aware, if hyperacusis does not reduce naturally or is not treated with self help or professional help is not sought, then the person will often be affected by spikes in the tinnitus and their auditory system/ears will always be sensitive to sound or certain sound. Some people believe spikes in tinnitus are a norm, they are not it is an anomaly caused by an over sensitive auditory system due to noise trauma and the oversensitivity hasn't improved or been cured in the manner I've mentioned above.

Unless you have additional issues in your life other that tinnitus I don't think seeing CBT specialist/psychologist is going to do you much good unless they have tinnitus. People that read my posts will know my reasons for saying this. Unless the therapist giving counselling to a tinnitus patient also has the condition, in my opinion they cannot give good quality counselling. The only way to understand tinnitus and to know how it affects a person's mental and emotional wellbeing is have the condition because it can't be learnt from a book or consulting with a tinniitus patient. It is for this reason many Audiologists/Hearing Therapist that work with tinnitus patients also have tinnitus. They were born with it or acquired it at some time in their life. My hearing therapist was born with tinnitus.

There is a lot of talk in tinnitus forums about Reactive tinnitus and regulars will know I believe there is no such thing. This condition was made-up in tinnitus forums around 15 years ago and has become common place. Not surprisingly, most of the people that say they have RT also have noise induced tinnitus. Indeed, their tinnitus is reacting to sound but it is hyperacusis or an oversensitivity to sound caused by the noise trauma. I mention this because I was at another forum, where someone was adamant they have Reative tinnitus and hyperacusis and was disagreeing with what I was saying. An ENT doctor on that forum who also has tinnitus said, Reactive tinnitus is a myth.

I wish you well.
Michael

 

To Michael Leigh:

I have been wearing the Widex Hearing Aids with the White Noise Masker since 07/15. I either have maximum amplification (which occasionally in hot, humid weather creates its own distortion) or (when I go to bed) use the White Noise Masker.

Is this similar to the TRT method?

I have become so neurotic about this that I have a daily routine that enables me to have some sort of amplification and/or masking for every second 24/7; for months I scrupulously did not permit myself even one second of exposure to the tinnitus sound.

Within the last five weeks or so, every morning I have run a test; I close my office window and door to create as much of a silent chamber as I can. I then take out the hearing aids.

Much to my amazement, I have been hearing nothing, and I mean the total absence of sound that I experienced prior to getting this. I still have a complete lack of trust, however; if I went without the Widex, I ask myself, would it eventually return? I have become so PTSD'ed that I cannot allow myself to believe that this might actually be gone.

If I had had this for only as long as, for example, two years, I could have forgotten about it and relegated it to the past.

I now understand when War Vets state that any loud noise causes them to react as if they are back on the battlefield hearing an explosion.

I unfortunately am thoroughly, irremediably f--ked; this has cripplyingly lodged itself in my consciousness that is similar to the lack of flexion I have in my left knee from cartilage damage caused by a High School wrestling injury.

Even if any of the reported treatments and/or drugs are really effective and available next year, I wonder if I am so ingrained with the sense of this that they would not liberate me; my secure power base is partially destroyed and unreclaimable.

What a dilemma and a recipe for varying grades of misery (and I really do not mean to be self-pitying; I understand how life for so many others is a far more terrible thing). I thought of seeking out a therapist, but I imagine my irritation with the usual platitudes and bromides that I would dismiss.

 

HI @DaveFromChicago

I am sorry to read of the difficulties that you are going through with tinnitus. I note that you wear Widex sound generators also have built-in hearing aids? I do not have hearing loss so the generators that I wear are just for emitting white noise.

When using white noise generators to treat tinnitus and hyperacusis, the white noise should be set slightly lower than the tinnitus. In other words the white noise must not mask or cover-up the tinnitus. When using white noise generators counselling with a tinnitus therapist is also advised. I explain this in my post: what is TRT and when should it be started, in the link below.

You are in some discomfort and I think if you were able to see an Audiologist that specialises in tinnitus and hyperacusis management it would be helpful.

Hope you start to feel better soon.
Michael

https://www.tinnitustalk.com/threads/what-is-trt-and-when-should-it-be-started.19024/
https://www.tinnitustalk.com/threads/can-tinnitus-counselling-help.22366/
https://www.tinnitustalk.com/threads/acquiring-a-positive-mindset.23969/

 

To Michael Leigh:

The proponents of Widex have, I believe, sold them for their "full coverage" value. And in previous years you could find such proponents on YouTube who maintained that such full coverage would eventually train the brain to "forget" the tinnitus sound (which has met with very mixed results to the point where I do not believe it is universally accepted).

 

That is what was done for me as well. They actually had turned off the amplification. This is why $3,000 to $4,000 for basically white noise generators without any counseling can be a bit hard to swallow. They have a business to support I guess.

 

@DaveFromChicago

Treating tinnitus and hyperacusis is complex, very complex indeed because it involves many factors. I explain this at length in various articles that I have written:

How TRT can be helpful.
The habituation process,
The importance of acquiring a positive mindset,
How a negative mindset can affect a person from habituating and accepting tinnitus. When I talk about having a negative mindset, I do not mean a person shouldn't ever feel down about their tinnitus, more is explained in the links below.

To understand the way I think tinnitus and hyperacusis can affect one's life, please click on the links below and take your time and read my posts.

All the best
Michael

https://www.tinnitustalk.com/threads/acquiring-a-positive-mindset.23969/
https://www.tinnitustalk.com/threads/tinnitus-and-the-negative-mindset.23705/
https://www.tinnitustalk.com/threads/the-complexities-of-tinnitus-and-hyperacusis.25733/
https://www.tinnitustalk.com/threads/the-habituation-process.20767/

 

What about hyperacusis then? You can't will yourself into not being in physical agony. No amount of positive mindset reinforcement or counseling for depression/anxiety is going to magically regenerate the cochlea. Are sufferers of hyperacusis simply fucked then, given that there are little no available treatments? I agree that most of the suffering that comes from tinnitus is psychological and can be talked through, but hyperacusis is physical degeneration of the synapses/hair cells causing nerve inflammation, trigeminal pain, sound distortions, misophonia (justifiably), physical agony, etc etc. Also TRT is usually thousands of dollars and not covered by insurance in the US and evidence indicates that it's ineffective for noxacusis.

As someone else pointed out earlier in the thread, TRT has about an 80% success rate, and stats show that about 80% of tinnitus sufferers eventually habituate... so they're putting a $3000 price tag on acceptance, which most people embrace by one to two years anyway.

 

Charlatans are alive and well in the 21st century! Lenire has an 80% success rate. Anyone can make up their own BS...

 

Is this their claim Bob?

If there genuinely was an 80% success rate we wouldn’t all be languishing here on Tinnitus Talk, would we?

I can see scammers and charlatans all over the tinnitus space, but whenever I attempt to point them out I get criticised for being too harsh, or too spiteful.

 

Who gives a shit. It only gets to you if you let it.

 

If you're asking about my personal experience with TRT and Hyperacusis, I found it didn't really help as the WNG's were too painful for me to wear. My Hyperacusis improved with time without the use of TRT. But that doesn't mean it wouldn't work for others.

People with Hyperacusis are not necessarily 'fucked' -- many times, Hyperacusis will resolve by itself, or it can improve with desensitization training. For some, it will not improve, as with Tinnitus. We are all different -- Tinnitus and Hyperacusis has many different causes (it can sometimes be stress/anxiety related, for instance) and therefore everyone responds differently to different treatments.

Personally, if I were American I don't think I would pay for TRT if ordinary counselling is cheaper, as I mentioned in the post you quoted. But if you are suicidal, you should seek out some kind of counselling -- at least as a last resort.