New here, but not to tinnitus ...

Hi -

I've had tinnitus for some twenty years. Been on and off various tinnitus sites for nineteen, but new to this one. Seems like a very nice place.

I used to post under my real name, then for a while with just my initials, but I've been stringplayer (or sp) for the last ten years or so.

Much of what you may have heard about me is flat out false. Trust me, the truth is bad enough as it is!

Anyway, I hope you'll allow me to share an idea or two from time to time and perhaps make some small difference.

Best to all.

Stephen Nagler

 

Welcome to the forum, Dr. Nagler.

I've seen your postings at TSMB, and I'm sure your experience will be welcome here.

 

Thank you, J M. I appreciate the kind words.

Stephen Nagler

 

Markku posted:

Welcome Dr. Nagler.

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Thank you.

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We have a few people here with decades worth of experience with tinnitus, but one more will certainly not hurt.

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I'll try not to get in the way of things!

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Actually, would you mind telling us how you first got tinnitus? Do you know what might have triggered it in the first place? Has it been loudness-wise the same throughout the years, or decreased, increased?

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Not sure what factors led to my developing tinnitus. I used to run marathons (many pounds, beers, and pizzas ago) and would wear headphones with loud music from a "Sony Walkman" during my long training runs. So maybe that played a role. I know that I was taking Relafen (nabumetone), an anti-inflammatory drug, for an elbow injury when I first discovered the tinnitus - so possibly that was it. What I have learned over the years is that in the final analysis, it really doesn't matter what caused it - since whatever it is cannot be undone. And moreover any time devoted to trying to figure out what caused it is time unnecessarily devoted to thinking about my tinnitus, which is time totally wasted as far as I'm concerned.

Within a week or so my tinnitus increased to the level that it is today, some twenty years later - a cross between a screaming teakettle and a jet turbine. 24/7.

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And how long did it take you to get to the place you now are, where your reaction to it has quite literally diminished?

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I went on an odyssey of sorts - trying "everything in the book." Eventually after six months or so of absolute misery, I settled on TRT. Dr. Jastreboff was my TRT clinician. It took maybe 14 more months (doing TRT) before my reaction to my tinnitus diminished. And I've been fine since. I am hardly ever aware of my tinnitus unless I purposely seek it, and when I do happen to become aware of it, while it can distract me, it causes me no distress. I suspect part of that phenomenon is due to the knowledge that within a few minutes I will once again be unaware of it.

Markku, I think it is important to stress that this phenomenon occurs in spite of the fact that my tinnitus is incredibly loud and high-pitched.

Hope that covers it.

Stephen Nagler

 

Dr. Nagler, what do you think was the single most valuable thing you learned from Dr Jastreboff?

 

Linds, that's a very good question. Dr. Jastreboff and I have become good friends over the years, and it seems I learn something new from him almost every time we speak.

I would have to say that overall there are two things that seem to stand out. They are not things that Dr. Jastreboff taught me per se, but rather they are things that have become apparent to me that would never have become apparent to me had our paths not crossed.

The first is that overcoming tinnitus is not a question of strength or of character. It is a question of strategy. You'd be amazed how many folks miss that point. They think that if they have not overcome their tinnitus, it's because they haven't tried hard enough, because they're weak, or because their tinnitus is somehow "worse" than the next guy's - while the reality is that they just haven't found the right strategy.

The second thing I learned is also something that has become apparent over time. And that is that 95% of the information out there on tinnitus boards about TRT is just plain wrong. I am sometimes accused of "promoting" TRT, when the fact of the matter is that the reason I write about it as often as I do is to correct something somebody else has written about TRT.

You will not find me posting about TRT unless somebody asks me a question about it or somebody has posted something about it in error.

The only thing I promote is that fact that just because you have tinnitus, that doesn't mean you must suffer from tinnitus. And since suffering is a reaction, the key to overcoming tinnitus lies in modifying how you react to it.

Stephen Nagler

 

how do you not be bothered by something that you find irritating? Im not scared of the sound/s, I am sick and tired of hearing it.

 

Deb, entire volumes have been written on that subject. Anything I might post here in response to your question will be woefully inadequate.

I guess a cognitive behavioral therapist would say that your feelings (i.e., your being bothered and irritated) are primarily determined by your thoughts (i.e., your being sick and tired of it). The cognitive behavioral therapist would have you analyze and challenge that sort of emotion-based thinking with the end result being a change in your feelings.

A TRT clinician would go about it differently. The philosophy there would be to (through sound therapy and TRT counseling) retrain your brain to classify the tinnitus signal as a neutral stimulus. The brain prioritizes and will absolutely not devote any time to attending to neutral stimuli. That's what Hr and Hp are all about in TRT jargon.

There are lots of strategies - CBT, MBCT, TRT. TAT, PTM, NTT, what-have-you.

You live in Geelong, Deb. What has Myriam Westcott suggested? She's less than an hour's drive away.

Stephen Nagler

 

Welcome, Dr. Nagler. Thanks for sharing your experience. I had hoped to hook up with Dr Jastreboff's clinic, as I have family in Atlanta, but he has moved on from Emory. I am going to University of Miami's research and ear clinic now.

My question: in the beginning, I thought TRT and NTT were very similar. Now I realize they are not. But I had a hard time finding audiologists who were doing true TRT. Why is that?
So I opted for NTT and we will see if it's the right strategy. I am two months in. If not, will try another strategy.

 

TRT and NTT are indeed quite different.

The reason that you might find it somewhat difficult to find audiologists who do "true TRT" is a long story. But what's interesting is the fact that those NTT audiologists who have had formal TRT training tend to have better results. That's because - TRT or NTT - the critical element is the counseling. And the Neuromonics folks don't teach counseling to their audiologists, whereas TRT courses focus on counseling and counseling strategies.

It is true that Dr. Jastreboff's clinic at Emory has closed - but there are three other clinicians in Atlanta with considerable experience in "true TRT." If your NTT doesn't work out, you might contact each of those clinicians (they're listed on Dr. Jastreboff's site), and see if you find a good fit!

Stephen Nagler

 

Thanks for your thoughts Dr. Nagler, much appreciated.

 

Glad to help, Linds.

If there's a mistake to be made in tinnitus, likely I've made it. Puts me at a bit of an advantage, no?

Stephen Nagler

 

Deb, besides Myriam Westcott (who's truly wonderful!) in Melbourne, the Tinnitus Association of Victoria is an excellent resource. I heartily recommend their DVD, "The 4 Keys to Successful Tinnitus Management."

Stephen Nagler

 

I have consulted with Ross Dineen.
I have also spoken to Ian and Ross (and have met them in person) from the Victoria Tinnitus association several times.
I have the dvd.

And here I am still struggling ...

Whilst I am back to work, sleeping has improved, and I still engage in social activities that don't revolve around loud noise, I am merely coping Vs Living. I am very bothered by 'it'. I get it intellectually, but I haven't developed a neutral reaction to the sound yet. Im not sure if I am expecting too much after 2 months. I cant see myself habituating to the point that I am no longer bothered by the sound. Whilst I am not reacting as dramatically as I did when I first became aware of it, I am still feeling quite negative about it all. I know changing my perception of the noise is an important step in managing my t, and I have sincerely tried, and will continue to try. I feel I have no choice but to believe those veterans around me who have managed to successfully habituate, when they say 'it will get better....I will habituate too.....'

I have sought the support of a Melbourne based audiologist who promotes the use of neuromonics. We have also discussed the use of a hearing aide (as I have a bilateral mild to moderate hearing loss) that has an inbuilt zen feature ). I am very confused with what is going to help me habituate. I am aware that the counselling is regarded as the most valuable part of the trt, but I feel I need relief from hearing the ringggghissssseeeeeeeeeeeeshhhhhhhh!!!

If I opt for the hearing aides with a zen feature built into them, will this mean habituation will take longer? how do the aides compare to the use of neuromonics?


thanks
deb

 

@DebInAustralia It's really not a simple thing, but you need to find the things that feel like they're helping, then just use them sensibly and try to forget about it.

You sound like you're putting a hell of a lot of effort into habituation, but that focus and attention is kind of the opposite to the goal. To habituate you need to be able to put it to the back of your mind. Use the tools you have to help you forget about it, and as best as you can, stop trying to measure how / if they're working. Not so easy in practice but you need to stop the mental cycle that makes you concentrate on it.

Oh, and don't waste your money on the 'zen'. All it is is a random tone generator that plays a basic sound, they make it sound really clever but it's just a really basic thing that is very costly for what it does. Save your money, I can make you some audio patches that are identical to it.

 

Deb, I agree with Steve. It sounds like you are working way too hard at this, which is a common mistake.

It's like the guy who lives near the railroad tracks who eventually becomes largely unaware of the trains going. There are two things he can do to delay that process. One is to try to think about the trains. And the other is to try NOT to think about the trains. Both strategies are barriers to habituation of the trains. Habituation of tinnitus, which is an internally-generated sound, is somewhat more complex, but the same principle holds. The harder you try to habituate (i.e., the harder you try NOT to react to your tinnitus), the more elusive that goal tends to be. It's good that you have consulted with Ross Dineen and met Ross McKeown. Still, it might help to get Myriam Westcott's spin on things.

Regarding Neuromonics, I'm not a huge fan and will post about why in another thread shortly.

In terms of Zen sounds (i.e., fractal tones), some might find them soothing (I myself find them irritating!)- but to the best of my knowledge there are no independent data anywhere suggesting that they promote habituation.

Stephen Nagler

 

Reintroducing myself ...

Hi All -

I've been posting on this wonderful tinnitus board for over a month now. And for a number of reasons (in consultation with Markku and the other admins here), I am going to start signing my posts with my real name. I believe it will avoid confusion in the long run.

Stephen Nagler
(was sp)

 

Thanx Stephen; but I'll still associate you with a guy who plays a stringed instrument and is helpful in matters with T

Mark

 

Hello Dr. Stephen Nagler,
I have seen your posts on another support forum. You have answered some of my concerns. I have read other things about tinnitus that you have written. I am happy that you are here too!!

 

Glad to be of help, @Mommaof2.

But it's a two-way street, you know. My participation on these boards enables me to be constantly reminded of the issues that tinnitus sufferers deal with every single day. That makes me a better doctor!

Stephen Nagler

 

I'm really glad you're using the board - not only is it great for interacting with people with the conditions in question, but because we're all looking for treatments and aggregating information, you benefit because you get to see some of the interesting stuff members here unearth.

More doctors should do what you're doing Dr. Nagler. It's great to see... more doctors informed about the latest in research and treatment can only be good. I feel a number of them try but some phone it in... and you end up feeling like you're more knowledgable about certain conditions than them! Glad to have you here.