Tinnitus Retraining Therapy

My little story with TRT.
I start to have T in December 2013. Mid January I start my TRT treatment. When I started my "mask noise" was 32 db. So we decide to have two "mask noises". One at 32db and other at 30 db. Today is 9th June and my mask is 18 db / 20db and 23 db. When I put the 23 db now, looks like "loud" to me. I´m going to met my ENT in 4 days to drop it to 16d, cause I know I will not see him for a month time. I will keep the 18th and mybe put the high " mask noise" at 21db. One month ago he even talked about me in a Siminar. Maybe I´m just a lucky T suferer and hope that my tretament wil last only one year. So in resume you can say that I got used to T by 2db every 15 days. If it was due to TRT or not i don´t know. Cause my audiograms show some improvements as well.

At end all we hope is get our earing better, but till now all I can say is that at least I have an exact "mesure tape", and when those bad days arrive: I just think that in the beginning was 32db. And that is the best counseling I have.

 

@FERNANDO GIL That's a great story! Very inspiring and an excellent testament to TRT!

If you don't mind answering, did you do anything else besides TRT? I believe in TRT. But some people with recent onset tinnitus might benefit from also taking NAC, which may limit cochlear damage. And how did you get tinnitus? Noise? Medications? Age?

Thanks!

 

Hi @jazz
The answer is NO. But i did a lot of exercise, I run 5/7 km everyday. I lost 12 kg in the last 5 months. And keep way from any processes food. Lately I started to take Magnesium and due to a state of anxiesty I´m taking Alprazolan. Wich some doctors say, Helps to reduce the T. Sometimes i think my is lower because of that. but my treatment started in January and only taking pios from 20 days ago. So preatty much I´m jut getting used to sound. And if notice that is the most proved treatment till today. How many people did talk that know someone that had Tinntus. Sudenly my friends keep telling me that someone in there family had T. but after a time they said is gone. So maybe the best treatment is right inside us. The most complicated machine in the world. Our brain.
I´m 47.

 

Hey all, due to a bad reaction to some medication (parexotine) i ended up at a psychiatrist. This is actually working out great, as he has tinnitus as well, and is very open to experiment with my treatment to see what works.

But now im in a bit of a bind. The psychiatrist is temporary (emergency only), and im moving to a more longterm combination of psychologist/psychiatrist to address my tinnitus anxiety. At the same time, i have an appt at an audiological centre to see if they can fit me with a hearing aid/masking device.

But I also have the option (I had already initiated this before my psychiatric 'event') to follow an actual TRT treatment, which has both combined. The TRT centre has the only dutch TRT trained doctor, and audiologists/psychologist. Problem is, it's about 1.5 hours away by car, while the other options are close by.

The first two separate options are definitely insured, the TRT treatment is maybe partially insured.

It is possible to somehow follow your own TRT-ish treatment by combining masking devices/hearing aids and psychological help or should I drop the two individual options and go to the TRT clinic (which btw has mixed reviews in local forums and is the only TRT clinic in NL)? Any opinions on this?

 

I went to an ENT doctor today who is supposedly trained in TRT. He said that the cause of my mild hearing loss was because my blood vessels where probably constricted. And the cause of my blood vessels being constricted where because a) I'm male, b) I'm overweight, and c) hereditary. By the way, my blood pressure is normal.

So my first question to the community...is a cause of hearing loss because of my blood vessels being constricted? If so, why aren't I seeing any other symptoms like migraines and such? And, isn't there some kind of test to see if this is true?

Then, he said in order to alleviate my tinnitus, I should learn to sleep better because he thinks I have Sleep Apnea (he did a scope down my throat and the skin that is supposed to cover my esophogaus is rather larger..I do wake up occasionally feeling like I am choking, but this happens only once in a while). And, I should lose some weight. So, he wants me to do a sleep study that will cost my (or perhaps my insurance) about $2,000 at the hospital. He says once I can get a deeper sleep and lose some weight, the constriction in my blood vessels will be better and thus my tinnitus symptoms will be better.

In all the reading and research that I have been doing, I've never heard of this kind of approach, especially for TRT. Is this guy legit? Is constriction of the blood vessels really a cause of hearing loss? (I'm 47 and have mild hearing loss at the higher hz range.) Is what he is saying really work as a treatment? Is what he is suggesting in line with TRT principles?

Oh, and he didn't do a hearing test until I suggested it.

Thanks,

Tony

 

Just curious: how do you know this guy is "trained in TRT?" Did he tell you? Did you see some certification? That is a big problem with tinnitus retraining therapy, as Dr. Nagler himself said when he was on this board. It is not a registered trademark, like Neuromonics. Technically, anyone can hang out a shingle and say they are doing TRT.

Originally, true TRT clinicians took a course through Dr. Pawel Jastreboff himself, the co-founder of TRT, or one of his associates. But it seems that nobody really kept close track of who truly graduated from the course. When I first was researching a sound therapies, I remember stumbling on a list of TRT specialists -- but it included a disclaimer that there was no proof these people actually were practicing TRT. Jastreboff's own site does not list graduates, and I also can't find much of anything about TRT on the American Tinnitus Association site. Dr. Nagler used to recommend people he knew personally.

I guess you could contact Jastreboff himself, but his page looks pretty sadly outdated, although it does mention a certification class in Sept. 2014: http://www.tinnitus-pjj.com/

This is just my opinion: But while I know Neuromonics sure isnt perfect, and that the company hands out the devices to technicians that don't do the counseling they should, at least you have some controls. Neuromonics is a trademark that company wants to protect. And if you haven't had their training, you aren't going to get their devices to sell to your patients. With TRT, there sadly are no such controls.

Oh as to your health question: Yes, circulation can be a factor in tinnitus. But I never have heard of sleep apnea being a "cause" of T. And docs love to order sleep lab studies. I already have been down this road, years ago, pre tinnitus. Docs are eager to diagnose you with this disorder because it generates a lot of money for them, especially is they can talk you into a c-pap machine. Yes, sleep apnea is a real medical disorder but I think it is way over-diagnosed. Just my opinion.

 

I don't see how those things are related to TRT.one of The link above has recommendations in terms of what to ask I believe .things like his success rate, how many people he has helped. Maybe who trained him in TRT.

I don't think the other stuff is trt related but if you do have sleep apnea and get better sleep it may help you indirectly by being better rested I suppose.

 

Apologies for my late reply. Somehow, my message got moved here and I didn't get any alerts that I had replies.

To answer the question about how I know if the guy is trained/certified: He's on Jastreboff's website and was recommended by another TRT doctor who says he doesn't have the time to do TRT with the amount of therapy involved.

Anyway, I don't think I have sleep apnea. I don't catch myself hardly at all waking up grasping for air. I also sleep on my side (been doing that since I was a kid). I have a hard time believing that anything the doctor said could cause hearing loss and thus the tinnitus.

In short, I am due to loss some weight and going to see if that helps. I do go to the gym and work out on the treadmill 3 x a week for 30 minutes. I'm going to up that a bit and cut down on the calories and give it a month to see what happens.

 

@tokyotony It kind of sounds like your doctor is being more of an ENT at the moment and not so much a TRT therapist. Which might not be a bad thing. If he can try and track down what's causing you these problems and eliminate the cause of your T then you won't need the therapy. I think most of us wish that there was a cause that we could track down and try to fix. If it fails, well, you can always try the TRT.

I know it has an 85% success rate as Dr. Nagler also said above but my doctor told me it is actually much higher in reality. Especially if tinnitus is new to you. The doctor I saw said that there were only a handful of people she couldn't help and they were the ones with long existing tinnitus that they never tried to treat before.

So hey, maybe things are brighter than they seem.

 

Well, I hope so but a bit surprised as the suggestions. And, no hearing test requested until I suggested it.

I get a pretty good amount of sleep, so I am hesitant to do a sleep study. I could lose some weight and will give that a try for now. I am pretty sure I don't have sleep apnea.

 

I think you would have some idea if you had sleep apnea, my uncle had it and could never get a good night sleep and was always tired. I think if its not affecting your life and you feel fine in that regard then i would be cautious not to waste your own money on it.

 

Curious about this...most people with tinnitus habituate on their own. How can TRT claim it is actually working and that people aren't just naturally habituating? Or, could it be placebo making TRT patients think it was TRT that helped them habituate, when in actual reality they would be in the same spot regardless of TRT?

Is there any proof (not just testimonials) that this isn't just another scam and is a real treatment? Are there studies proving that this is a legitimate treatment?

There are a ton of scams out there as we all know, is this another one to avoid?

I'm asking because I DONT KNOW, just so I am clear.... I have NO opinion either way. This is why I am asking for opinions.

Thx

 

Hi @Telis

Let me give you my opinion although Dr. Nagler can probably much better tell about TRT, habituation and success rates. It is difficult anyway since the opinions about TRT, real-TRT, self-paced TRT, good TRT doctors, real TRT doctors differ and were already discussed heavily here on this board.

I did (real or no real) TRT in a German tinnitus clinic. They explained me all about how the auditory system works, latest research on T, H, hearing loss, gave me all the examples how to get used to a repetitive sound (trains, airports etc.). I had WNGs for some weeks, hearing aids and combination of both. None were really helpful for my high-pitched (14 kHz) T (sounds like a electrostatic power plant in my head).

TRT takes up to 24 months, but I guess there is no real end date. You will do it until you habituate. The main part here is that you have a TRT doctor you can contact any time you want (more or less). But at the end of the day (my opinion), your brain/body must get used to the sound. Either with TRT or without. TRT can help you mentally and you have a doctor at your side. But if habituation is then quicker or not, no one can really say. Because even the people who did TRT cannot say if they would have habituated at the same time without TRT.

I remember there was one study discussed here on the board, which was not so positive about TRT (
according to efficiency). And I think it is difficult doing a study about it at all. It is no drug and there are so many parameters involved.

I am one year in T. It is an ugly sound in my head. But I am alive and I go through my day as good as possible. I actively not react to - what is the most difficult thing in my life yet. I hope, my body/brain will do the rest and there will be a time in the future T goes into the back of my bus. So in my opinion and hope, habituation will work with and without TRT.

Just my opinion.

 

Hello all!

I am new to this forum. I have had tinnitus and hearing loss in my left ear since some physical trauma in Aug. 2013. I also have mild hyperacusis (or so I believe).

Over the past year, my tolerance to my T has been on and off. Some days I almost like it, seeing it as being part of me and a unique challenge that makes me stronger. Other days, it can be a pain in the arse (pardon my French). Lately it has mostly been the latter, and so I am finally going forward with seeing a TRT licensed specialized at a T&H Clinic here in Montreal, QC, Canada.

I'm 21 years old, so I would rather not have massive white noise generators on each side of my head for the world to see. That said I do understand that this is a pillar of treatment. My question is, what do these noise generators look like? Does anyone have a picture? I can find ample information on TRT online but have not seen a single photo of these white noise generators.

Also, does anyone know how long it typically takes for habituation to occur in TRT? Once habituation occurs, can I discontinue the treatment or do I have to go for the full 18-24 months?

Thanks!

Edit: Are these generators all Behind-the-ear or can I get one that is CIC (completely-in-canal)

 

From what I read, Dr.Jastreboff does not recommend in-the-ear noise generators, for the reason that they block some of external noise.

 

The need to preserve stimulation in the low fre-
quency range yields a strong recommendation for
people who have relatively normal low frequency
hearing, to be provided with devices or hearing aids
with fitting as open as possible. It is not sufficiently
appreciated that in the normal acoustic environ-
ment there is a high proportion of low frequency
sounds, below 200 Hz, which provide constant
stimulation of the auditory pathways. Since the
majority of patients have relatively normal hearing
in this frequency range, they benefit from this stimu-lation. Consequently, blocking the ear canal byclosed ear molds decrease the auditory input, and
many patients experience the enhancement of tin-
nitus when their ears are blocked. -Dr.Jastreboff

 

@Dr. Nagler Why is TRT so expensive, when it focusses on counceling and habituation? A good psychologist (those visits are insured) can help with that too, maybe with CBT?

I've heard the prices of TRT and I doubt I will invest the large amount of money. Better put that into the TMJ treatments I'm doing every week.

Also, TRT is only done by a commercial company in the Netherlands. No audiologist (I've seen a lot of them) recommended TRT.

 

Thats a fair point Telis, I don't think it would be something you could prove beyond a doubt, because i think it would be quite hard to set up a double blind placebo study with TRT. But if i remember correctly @Dr. Nagler helped people who had not habituated to it something like 20 years.

 

@Codaz - Dr.Jastreboff charges only $2000 for TRT (maskers sold separately)

 

My T felt out of the sky onto me, but the $2000 did not. So if that's the price (with no guarentee at all) I'm not investing it. I will invest money into TMJ treatment and neck physiotherapy. As that helps and TRT is focussing on habituation. I want to be treated, not habituated.

 

Can TMJ treatment cure the T altogether?

 

Let's hope it. But tense musles need to be trained, fixed. For now, every week it goes better. More quiet days are there.
If it was still so loud as 2 months ago I would have doubt if it worked. But it does work.
I'm still trying to find out which is the biggest impact on my T, my neck or jaw.

 

Friday I'll be having my second session with my TRT counsellor. Are there any people here that have had any experience with TRT? I hope it'll make my T go away..

 

The aim for trt is habituation, not to make the t go away...
Scientists say habituation occurs spontanously for most people.

 

Like Steven said above trt helps with habituation. Did your trt clinician say the t would disappear?

?

 

She said her husband's T completely disappeared because of trt. Even when he plugs his ears it's quiet. I know trt's main goal is to habituate one's T. But I wonder if you can habituate to the point where you don't hear your T at all even when your plugging your ears (I'm a perfectionist which makes it really hard for me to accept the ringing as something I'll have for the rest of my days)
?

 

@Lisa123 I can definitely relate to being a perfectionist, Im used to doing things a certain way and don't give up until i get there. Your tinnitus will not disappear but you can get to a place where you only hear it if you listen for it and to a point where its a non issue.
I dont mean to cause you any worry but i do wonder about a clinician who would tell you something like that. If you have specific questions about TRT I would ask @Dr. Nagler , im sure he'll chime in if he has anything to add.

 

OK. I'll add something ...

Her husband's tinnitus may have disappeared completely, but it wasn't because of TRT.

Dr. Stephen Nagler

 

Correct.

Right again.

TRT is only for those who are not habituating spontaneously or for those for whom the process is moving too slowly.

Dr. Stephen Nagler

 

So, I slowly ignore the T more and more although it is there would this mean I am habituating spontaneously?