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Michael2133

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 #1 
Dr. Nagler -

Some background. I am in month 6 of my tinnitus odyssey. Starting about month 4.5, I began to see significant improvements (two steps forward, one step back). So much so that by the end of month 5, I sincerely questioned whether or not I needed TRT (and truthfully thought it had just about dissipated in the right ear and had a little left in the left ear and only heard it in just about absolute silence like in a parked car), but proceeded anyways to make sure that I was on the right track and stayed there. I believe I am a category 1 with some general decreased sound tolerance, not hyperacusis and assigned misophonia protocol. I don’t seem to ever recalling having my tinnitus react to noise except maybe a couple of times when I ran the AC in the car on full blast (it also sometimes seemed to be louder going from a noisy to quite environment, but I didn’t think it was an absolute level change). I was assigned wng’s and advised to wear them initially at a comfortable level for 8 hours a day. After day 1 of wearing the wng’s, I noticed a spike that subsided. I was informed that it was normal in the first couple of weeks as the brain gets used to it, so I wore them for two more days for 8 hours. After day 3, the spike didn’t subside and things felt considerably worse. I was advised to wear them without batteries for a week. It perceives to be louder, more intense, and have an overall higher pitch on top of it that can be heard in most circumstances now, like a high pitched sizzling. Given where I was at prior to this, I am greatly disheartened and scared. The ATA shared a piece last Thursday (that I accidentally read while un-following them for TRT), with a study claiming white noise could damage the brain, potentially cause/exacerbate tinnitus, so the timing of me seeing that was most unfortunate, even though it’s disclaimed within the article that it’s not settled science.

Are you aware of wng’s making things permanently worse? Is this anything that you’ve seen before? I don’t know if the wng’s somehow knocked me off of my habituation path or made things worse, but I am fearful of using the wng’s now given where I was before them and can't believe how many steps backwards I feel in such a short period. 

Thank you for all you do!
Michael2133

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 #2 
I was also in a moderate car accident the day before my first appointment (car rear-ended ours). Could that have been a factor in the setback? If so, should it take as long to get back on track as it did initially?
Dr. Nagler

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 #3 
Hello Michael -

Sounds like you have a lot going on there. Very sorry to hear that you are going through a rough patch.

So first of all, the broadband sound produced by the wearable devices used in TRT cannot possibly damage the brain in any way. I do not know what study you are referring to, but it is absolutely impossible for the devices used in TRT to cause damage to any part of the auditory system. 

As to why your tinnitus sounds louder at present, tinnitus loudness is multifactorial - and it would take a while for me to try to dope that out. Even then it would be just a guess. But rest assured that your concern about it being due to damage caused by your wearable TRT devices is totally and unequivocally without foundation.

I am unsure as to why you were offered TRT in the first place, but whatever is going on at this point in time, it is not due to some sort of irreversible damage.

Hope this helps.

Stephen M. Nagler, M.D.



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No bird ever soared in a calm. Adversity is what lifts us.
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Michael2133

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 #4 
Thank you Dr. Nagler. Is this something that you've seen before (i.e. spikes surrounding introduction of wng's)? Can the protocol be effectively implemented with desktop/alternative sound generators? I know that it would be more difficult to maintain the constant level of sound without wng's. I feel like I've jumped backwards four months and hope that I can recover.

Dr. Nagler

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 #5 
Quote:
Originally Posted by Michael2133
Thank you Dr. Nagler.

You are welcome.

Quote:
Is this something that you've seen before (i.e. spikes surrounding introduction of wng's)?

I've seen spikes associated with just about everything.

But here's the thing. What I think and what I've seen do not matter. It is clear that you feel it likely that the increase in the intensity of your tinnitus is in some way related to your TRT devices. I do not know what sort of explanation and counseling you had before you started using the devices. I do not know if you really had a clear understanding of the role of the devices in TRT to begin with. What I do know is that you now have a negative association with the devices. That being the case, I doubt that you will readily habituate the devices. And if you cannot readily habituate the devices, I suspect they really won't be of much use to you in habituating your tinnitus. In time you’ll probably be just fine, but I don’t think TRT devices are going to play a role in it.

Quote:
Can the protocol be effectively implemented with desktop/alternative sound generators? I know that it would be more difficult to maintain the constant level of sound without wng's. I feel like I've jumped backwards four months and hope that I can recover.

I honestly think you are putting the cart before the horse.

If I may ask, what specifically did you expect TRT to accomplish for you before you ever tried the devices? Seems to me you were doing quite well with your tinnitus at that point in time. Indeed, according to your first post in this thread, you yourself "sincerely questioned whether or not [you] needed TRT" at all! So what outcome were you seeking with TRT? In what specific way or ways did you hope to be better off as a result of doing TRT? It's a very important question. So please do give it some thought.

Also, exactly how much TRT counseling have you received and (very briefly) what did that TRT counseling entail?

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
Michael2133

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 #6 
"What specifically did you expect TRT to accomplish for you before you ever tried the devices?"

It was two-fold. The prospect of starting TRT during the really tough times I felt gave me hope and something to look forward to and I wanted to follow through on that (if things took a turn for the worse I'd have regretted it). The second was to ensure that I was doing everything that could be done to restore some normalcy back to life after what I’d been going through. I was informed that TRT would still be of value to me so I followed through.

"Seems to me you were doing quite well with your tinnitus at that point in time. Indeed, according to your first post in this thread, you yourself "sincerely questioned whether or not [you] needed TRT" at all! So what outcome were you seeking with TRT? In what specific way or ways did you hope to be better off as a result of doing TRT? It's a very important question."

I wanted to make sure I was utilizing every resource available to me to improve and continue to improve my quality of life. While I was feeling better, I did not know for sure if I was doing all the right things. The good days were more frequent, the bad days were less bad. I wasn’t sure if it was because of habituation or the horse was going back into the barn, but if there was something that could be done proactively to put this to bed I was all for it. If habituation means the sound is perceived as less loud, then maybe I didn’t need it and was on the right path. If the sound itself was lower and consequently just meant less distress, then maybe I wasn’t there yet. The clinician is highly regarded and I trusted their judgement that I could benefit, but ultimately I wanted to have limited negative reactions to the sound when I did hear it and ideally limit the amount of time I was consciously aware of it. There were still occasions when it made me sad or frustrated me that I couldn't be in quiet places and continued to live in fear of it. It still "was driving the train" so to speak in several aspects of life but the destination was more pleasant then it had been in months past. And there were just general questions, would I always need sound enrichment to sleep at night, etc.

"Also, exactly how much TRT counseling have you received and (very briefly) what did that TRT counseling entail?"

An hour or two I’d say of strictly counseling though the appointments were much longer with various questions throughout. The clinician came recommended by you (and was everything that was expected and more) and was very considerate, took time to answer my questions, was kind and very patient. I was walked through the neurophysiological model and how the auditory system works. More specifically how the signal flows through the limbic system, and how the goal is to cleave the bond between the signal and the limbic system's fear center so that there would be little to no reaction to the sound when I did hear it. I was told the role of the devices was to help neutralize the signal to help facilitate habituation and that for some people the actual masking level can go down.



Dr. Nagler

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 #7 
Thank you for your response, Michael. I’ll post my thoughts within the next few days; there’s a lot to process. (Didn’t want you to think I’d forgotten you!)

In the meantime, as best you can determine, is your present tinnitus the same, louder, or not as loud as when it was maximally loud.

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
Michael2133

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 #8 
Thank you Dr. Nagler,

I would say it is at least as loud as any point that I can remember.

Things felt consistent for about 3.5 months, and then begin a slow fade with ups and downs along the way into month 5 until this spike. I used to wake up most mornings with a quiet "shushing" (a nice reprieve in one ear) which doesn't happen much anymore starting in the last month or two.
Dr. Nagler

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 #9 
Hello Michael.

I've been struggling a bit with respect to how to put together a cohesive response. Perhaps I'll just throw out some random thoughts ...

In terms of your TRT clinician. As you may know, there's some really bad TRT out there. But that said, as soon as you mentioned (in your post #1) that when you began to experience difficulty, your TRT clinician suggested that you remove the batteries from your devices, I knew that you were in the hands of someone who is highly experienced and knowledgeable. I bet that there aren't three TRT clinicians in the entire country who would have known to do that. The fact that subsequently (in post #6) you mentioned that it was a clinician I myself recommended only reinforced the fact that you chose well.

I am still not clear as to why you decided to go ahead with TRT in the first place. You had arrived at the point where you were hardly bothered by your tinnitus at all. Had you contacted me while I was in practice about making an appointment to start TRT, I would have offered you some suggestions over the phone, but that's about the extent of it. As to why the person you saw felt differently, I suspect that your mind was pretty-much made up at the time of your appointment. But that's water under the bridge.

You referred in one of your posts to a paper that claimed white noise could damage the brain. I located the paper, which was published just last month, and read through the whole thing carefully. I do not want to get into the nitty gritty, but suffice it to say the paper is highly flawed. Moreover, the authors have a financial relationship with a company that has developed a tinnitus product that does not use white noise - so there is incredible investigator bias. In my opinion ATA has done you a distinct disservice in sharing it with you. 

There is no reason whatsoever to believe that white noise damages the brain - and a lot of reasons to believe it doesn't. Could I be wrong in that regard? Sure, I guess. But it ain't very likely!

Well, what the hell happened to you, you might ask. Damned if I know. Could it possibly have been somehow related to your devices? I'd be lying if I flatly told you no. But I suspect that there was a whole lot more going on with you (your emotional investment in undertaking a treatment protocol you weren't sure you needed being but one) at the time you experienced the increase in volume of your tinnitus. And you have no way of knowing whether the same thing might have happened had you embarked upon a protocol that involved a treatment modality other than white noise!

What does the future hold for you? Well, given that no damage was done, I suspect that in time things will settle back down and you will be no worse off than you were before this unpleasant experience, which is to say you'll be fine.

How long will that take? I have no idea, but I can guarantee that beating yourself up over your decision to embark upon TRT isn't likely to help matters!

All the best -

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
Michael2133

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Posts: 14
 #10 
Thank you Dr. Nagler. I don't really know how else to say thank you but I hope to be in a position to give back one day, even if it's a fraction of all you've done. You'll be in my prayers.
Dr. Nagler

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 #11 
Quote:
Thank you Dr. Nagler.

You are welcome. Glad to help.

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
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