Tinnitus Retraining Therapy

#2
I live on Vancouver island in British Columbia, Canada. We have a hearing clinic here with audiologists and one of them has taken the course on TRT (tinnitus retraining therapy)

First I had my consultation. She was very nice but didn't tell me anything I didn't already know from researching online. (just typing 'jastebroff model' into google and reading everything that I could find)

I really wanted to commit to the treatment so I got the sound generating hearing aids, I started wearing them yesterday.

They are not sexy, I will not be picking up any chicks with these things. They feel like wearing earbuds in my ears so I image my ears will get sore after a while.

The sound is a pleasant one, like air leaking out of a tire. I skimmed around online and listened to various white noise mp3s but haven't found anything that sounded exactly like it. I try to keep it on a low volume because I don't want it covering up my tinnitus all the way. If I'm in a quiet room, I can hear the air sound, and I can hear my ringing underneath it (a bit faint) so I would say that these things have been worth it. I'm not sure if the whole course + the sound generators are worth the 2 thousand I paid yet, but we'll see.

Strangely, a part of me wants to fight and face my ringing and I feel uncomfortable having it covered up with the hearing aids. Maybe that's just the fight-or-flight in me kicking in. The TRT model depends heavily on these things so I'll stick with it.

I was hoping I could sleep with them in, but they're quite uncomfortable. Sleeping in general has been the worst part of tinnitus for me. I'm back to work regularly and I'm not bothered by my tinnitus too much during the workday if I am keeping busy, but night time is really bad, I can't get my tinnitus masked while in bed. I got a pear of SleepPhones (headband headphones) but any kind of headphones or any kind of covering up of my ears cranks my ringing up to full volume. Right now the only chance I have at sleep is fans, rain.mp3 playing behind me, and also tv with 2 small speakers next to my ears. I turn off the tv and listen to the audio of old shows or old favorite movies and sometimes I can get some sleep. I have to lay flat on my back like I'm laying in a casket, because if I roll over and put my ear on the pillow my volume shoots up. I wish headphones worked for me like they work for others... maybe with some more time.

Anyways, I'll let you guys know how the TRT sound therapy is going.
 
#3
Douglas,

Good luck with your TRT.
As far as sleeping goes, I have had the exact same problem. Until I got the Pillowsonic Pillow Speaker and the SleepMachine app on my iPhone. Using the speaker and App has enabled me to lay my head on a pillow again after a couple of years suffering with the problems you described. It doesn't completely mask the tinnitus but well enough to where I sleep through the night. I highly suggest it.
 
#4
Tha_b_man said:
Douglas,

Good luck with your TRT.
As far as sleeping goes, I have had the exact same problem. Until I got the Pillowsonic Pillow Speaker and the SleepMachine app on my iPhone. Using the speaker and App has enabled me to lay my head on a pillow again after a couple of years suffering with the problems you described. It doesn't completely mask the tinnitus but well enough to where I sleep through the night. I highly suggest it.
Click to expand...
Hmm, perhaps I will at some point. All my life I have slept on my side. Trying to sleep flat on my back has introduced even more problems, I snore like a wildebeast.

A lot of TRT seems to have to do with counseling, and explaining all the principles. I don't see myself going in again for reassurance and re-explanation. I see it going something like this:

How is everything going?
Not bad, a little better, I have good days and bad days...
Ok, well, keep it up! That'll be $100.00! :D
 
#6
I wish headphones worked for me like they work for others... maybe with some more time.
Click to expand...

I had a very difficult time with sleep early on. I started using these things http://www.bodyguardz.com/earjax-tonic-earbuds-headphones-earphones.html They are the lowest profile earbuds I could find. I can lay on my side and they are still fairly comfortable. Took a while to get used to them. I've been wearing them for so long now and gotten so used to them I can't sleep without them. Even if the T was gone, I would still wear them. No more awakening to barking dogs etc! Good luck with the TRT Douglas, I hope you get some good results.
 
#7
Has anyone used the sound generators before? I am on day #4 and something rather nasty has happened.

If you haven't used the sound generators before this is going to sound weird, but I'll try to explain the phenomenon. The sound generator sounds like air hissing. You turn up the volume, and eventually you get to this point where the hissing and the tinnitus start to "mix" together. The pitch of my tinnitus starts to warble and fluctuate. You're supposed to turn down the volume if this happens.

Well, it's not exactly an exact science. I will be in a dead quiet room, and adjust the volume. Once I start going about on my day, I will get the mixing/warbling sound. You're not supposed to constantly adjust your volume, you're supposed to set it at the begining of the day and then not fuss over it. Even with the sound generator turned down almost to the lowest volume, I still get the "mixing" sound.

Last night, I rigged up all my water sounds and fans and what not, and took my sound generators off. I was having a really hard time masking my tinnitus, and then I realized that the warbling/mixing sound was mixed in with my maskers! So instead of the low hum of the fan, it had this tinny, warbling, ringing pitch added on to it. The same with my rainfall sounds. When I got out of bed and took a shower, the shower was doing this warbling sound as well, and the shower has always masked my tinnitus.

I sent a message to the lady I took the TRT from, not expecting much because I think she's new at it, but she sent me back a message along the lines of, "it's very normal for the tinnitus to get worse a few days or up to 2 weeks after you start using the sound generators, that is just the tinnnitus 'normalizing.'"

I'm not sure if she is just making this up off the top of her head, or if this is a phenomenon other sound generator wearers have come across.
 
#8
Welp. I took my sound generators off today. The echoing was really bad, I started to get a panic attack. This is really crappy, I currently cannot mask my tinnitus. More accurately, I have a second tinnitus now. The original one, and a new one, that rings and warbles when I listen to any sound.
 
#10
file this under old news, but its still news in that the track record continues to impress

the jastreboff model has at its core three ideas, sound enrichment, habituation and counseling to get the a person to understand and believe that the big T is really not that big, and cant end their happiness unless they let it and so aims at helping us to calm and distract ourselves

for those who are traveling across the "delta quadrant" (star trek) ;) of the internet desperately looking for T help, if you get a hit that brings you here, of course wed like you to stick around...but as well, consider the free self help web site:

http://www.tinnitus.org/

when you get there go to the link that says "enter here" and then work all the links on the left hand side of the site, especially the sample chapters out of the TRT book (samples are free) and check out the "hand-outs" especial the three page discussion on appropriate "sound enrichment"

the entire site is free and has been very helpful to me and hope you feel the same

btw for those who are willing and able to travel, spend money, and want the professional package, if you web search for " dr pawel jasterboff and trt" i think you will hit his clinic which is somewhere on the east coast-usa

so far im just doing the self help approach

best wishes
mock turtle
 
#13
Hi J. - While I haven't seen a professional for TRT (no money, no insurance), I spent countless hours online a few months back looking into and compiling sound maskers. Whenever my T would get stuck at high, almost unbearable levels on an extended basis, I'd plug in either to a portable MP3 player or select various tracks saved to the tinnitus sound folder on my computer. Luckily, I'd done enough "research" (translation - Google), to know enough NOT to pay any of the charlatans out there for their exquisite tracks and pseudo-scientific promises; there are plenty of free, reputable sound masking resources out there if you look long and hard enough. The end result, for me at least, is that I no longer look in that direction for either a coping solution or remedy. In my case, I found that sound maskers offer more of a placebo effect than any real solution, and any relief from such is so short term that it acually heightens my anxiety. However, a couple of years back I did get some relief once in a while from one of those night-noise machines when trying to get to sleep during particularly bad episodes. My guess is that it varies with the individual, current stress over the condition, and the overall time span where T has been a major issue.
 
#15
I checked out a hearing clinic hear with an audiologist who went to one of Jasteboff's seminars and was offering Tinnitus Retraining Therapy. I paid a few hundred dollars to meet with her twice. She was very nice, and friendly, but didn't tell me anything I didn't already know about TRT by doing some searching on google. I tried the sound generators for a week, and then they let me take them back. The masking sound was very nice for my particular tone of tinnitus, but I was still very early in my onset of tinnitus and I think my hearing was still adjusting, and it triggered odd effects in my hearing.

I would say if you have the cash, and you really feel better about talking to someone, than give it a go.

I'm curious if anyone has ever met with a psychiatrist to talk about tinnitus, it seems like it would be more helpful than TRT. Maybe a therapist who specializes in cognitive behavioral therapy?

My year long treatment has been the "suck it up. stop crying about it, people have way worse conditions that your stupid tinnitus and no one wants to hear you whine about it" therapy, with mixed results.
 
#16
Okey. So I found this place in Oslo. It's an ENT and two audiologist. They are specialized in handling with people with tinnitus. It's private, but supported by the public. They are trained in TRT. They say that 80% of the people how goes there learns to ignore it. Others experience a lower tinnitus, and some even get rid of it.

This is a private clinic, but since it supported by the public it's no snake-oil shit. The public even pay my bill! Or, I have to pay a contribution, but that is like 10% of the actual price. So it's almost free!

Do you guys want to have a report of what's going on there? If you want that, I can bring a tape recorder. Then translate it into text to you guys.

I want to do this because I know a lot of people live places with no free health care, and can't afford this kind of treatment. And that is stupid and not fair.

What do you guys think?
 
#19
Yep. I heard Linnerud was the only place they did TRT in Norway?
My ENT also said that most people have no need for TRT at all, and that the best thing is to learn to live with it "before it comes to that".

But I don't go to school or university or anything this year so I have a lot of free time lol.


Fikk tinnitus etter at jeg rulla med en russebuss... fml
 
#21
No they'll let you go if you want. But yeah, I think it's most relevant for people with severe tinnitus.
But I was offered a spot.

But on topic:
I think it is a great idea to tell people on this forum how it is and what you get out of it, if it's worth it or not etc!
 
#22
Erlend said:
But on topic:
I think it is a great idea to tell people on this forum how it is and what you get out of it, if it's worth it or not etc!
Click to expand...

I think it can help just talking with a doctor who actually listens and understand. All the ENT's I have been to until now have just ignored all my questions. I don't think they are bad doctors, but I think many ENT's are very ignorant to tinnitus.
 
#23
meeruf said:
This is a private clinic, but since it supported by the public it's no snake-oil shit. The public even pay my bill! Or, I have to pay a contribution, but that is like 10% of the actual price. So it's almost free!

Do you guys want to have a report of what's going on there? If you want that, I can bring a tape recorder. Then translate it into text to you guys.
Click to expand...

Wow, good for you!

But given that the goal for you is to forget all about your tinnitus, maybe it would be advisable not to make those reports very often, just a thought..
 
#24
meeruf said:
Okey. So I found this place in Oslo. It's an ENT and two audiologist. They are specialized in handling with people with tinnitus. It's private, but supported by the public. They are trained in TRT. They say that 80% of the people how goes there learns to ignore it. Others experience a lower tinnitus, and some even get rid of it.

This is a private clinic, but since it supported by the public it's no snake-oil shit. The public even pay my bill! Or, I have to pay a contribution, but that is like 10% of the actual price. So it's almost free!

Do you guys want to have a report of what's going on there? If you want that, I can bring a tape recorder. Then translate it into text to you guys.

I want to do this because I know a lot of people live places with no free health care, and can't afford this kind of treatment. And that is stupid and not fair.

What do you guys think?
Click to expand...
I'm interested. I think many here are!

Have you actually booked an appointment already? Do you know when you are going there?
 
#25
Markku said:
I'm interested. I think many here are!

Have you actually booked an appointment already? Do you know when you are going there?
Click to expand...


Yes. I have booked. I have an appointment 14th October. I have to wait three weeks. But I can cope, my ringing have been quite low the last 2 days. Now its just irritating, not maddening. :)
 
#26
Since this 2011 TRT thread has popped up again, thought I would chime in:

I spent about three months researching different tinnitus management options, after it was clear there would be no quick surgical or medication fixes for me. I was interested in TRT, as well as other programs. But it appears that very few universities or providers in the U.S. offer true TRT any more, "true" being the model pioneered by Jastreboff. The Tinnitus Retraining Therapy Association itself (started by Jastreboff and others) appears to be defunct. Its page hasn't been updated since 2007 and the Florida members I looked at either weren't practicing or were questionable. (The page itself warns that members' credentials never were "certified" by the association; they just listed people who said they practiced TRT).

Even the University of Miami, which has a large hearing disorder clinic and is where I now am going, doesn't offer TRT any more. The audiologist there said it was too time intensive and restrictive for both patients and clinicians. Seems like more streamlined therapies that incorporate TRT principles have taken over.

That being said: I opted for Neuromonics. Miami's program includes an extensive counseling protocol, as did the original TRT -- something not offered by all of the Neuromonics providers I looked at. Price ranged from $5,000 to $6,000 and basically is non-refundable. (Miami agreed that I could return it for a refund if I hated the device but only had two weeks to do so, not enough to tell if its effective.) You pay up front.

Yeah, I know its a lot of money and ridiculously priced. Still, I am going for it. I start in November, as they would not take me until I was at least six months from onset. I will keep you all posted under another thread after I start, and welcome comments from other Neuromonics users on this board.

And by the way: my treatment experience in a research university setting has been COMPLETELY different than in the medical community at large. If you have any medical schools remotely close to you, I recommend you check them out as providers. They are so much more knowledgeable and actually interested in your treatment experience, as getting patient feedback is part of research.
 
#27
Good luck LadyDi. Keep us updated. Maybe start a thread about your experience using this device over the months. It's no secret that I am not big fan of companies like Neuromonics, but I support you nevertheless and would be interested in following your progress and I think others would be too.

I think it might be good to have a "journal" section on TT where people can post their experiences without comments from others. That way we can document the various treatments that people try successful or not. Similar to what we had recently with the stem cell thread.
 
#28
Thanks for your good wishes, Erik, and for all you do for us at TT. And think a journal section might b a good idea. I thought it helped to separate the journal and the comment re. the recent Bangkok stem cell journal.
 
#30
Leah said:
Thanks Lady Di I have a place near me that is offering Neuromonics treatment and was doing some research on it too.
Going to check into it.
Click to expand...

Hey Leah... did I see you say in an earlier post that Cleveland Clinic was near you? I would definitely take a look there. Make sure wherever you go that they have a strong counseling protocol, other support staff with knowledge about tinnitus. And check out the training of the audiologist who will be working with you; I don't think its too complicated to get certified through Neuromonics, which I sense is all that's required to sell the product. I have waited extra months to get into the Miami program because the first one that qualified me was part of a large ENT practice, and I didn't think they had the experience or staffing to handle it properly. They were just looking for a way to bring in extra money.
 

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