Dr Nagler,
Firstly, thank you for sharing your experience and clinical expertise on this board.
You are most welcome. Everybody here brings something of value to the table. What I bring happens to be experience and clinical expertise. But as you will see farther down in this post, those who bring support bring something whose value goes far beyond what words can possibly express. Their contributions dwarf mine.
On a more personal level, I would like to thank you for putting me on the right path to treatment. It was through you that I became aware of TRT, the pitfalls of finding genuine treatment, and ultimately for your recommendation (to others, but which I read) to engage Jacqui Sheldrake at the Tinnitus and Hyperacusis Centre in London.
Very glad to be of help.
Although I rarely come to TT anymore, on one of my occasional visits I was saddened to see that your tinnitus had changed.
Yes, it got worse, a lot worse. I purposely chose not to reveal the full extent of the problem at the time. But now that I am OK, I am happy to do so.
I've been following your support thread to see how you have been going and by your reports things are much improved. Unfortunately your support thread has been enveloped in a lot of the negative noise that can be readily observed on this board.
Yes, the negative noise in that thread got so bad that the admins ultimately had to totally shut it down. Can you believe it? A thread I started on the Support forum because I myself was really in trouble ... and it got shut down because some gentlemen just
had to make noise and strut their stuff.
What techniques and protocols did you utilize to facilitate your re-habituation?
Well, this may take a little while, but I'll tell you exactly what I did. The time frame may be off a bit - because some of it is still a blur.
For those who do not know my tinnitus history, see the attached document at the end of this post.
Anyway, my VERY LOUD tinnitus had not given me much trouble since 1995, when I completed TRT. That is to say, while it remained incredibly loud and would intermittently distract me, taking my attention away from whatever I was doing for minutes on end, it caused me little in the way of distress. Fast forward some twenty years until maybe six weeks ago, when out of the clear blue my tinnitus totally changed in character. As loud as it had been, unbelievably it seemed to get markedly louder. (Subsequent testing revealed that what had changed so dramatically was not the loudness, but the pitch, which had increased from 8K to 12.5K.) But all I knew at the time was that it had become almost deafening.
I figured that within a day or two at most it would begin to return to baseline, but it didn't. Indeed, I felt like it was boring into my head. A few days later my wife was scheduled to go on a long-anticipated "girls' week away" with some friends, and I didn't want to screw things up for her - so I said nothing. At some point along the road I posted on the Support forum that I was going through a rough patch, but my post did not in any way reflect the magnitude of what was really happening. I had trouble thinking straight. I could not get my mind off my tinnitus. And I became sad. Very sad. Like all the time. I also became extremely anxious. I couldn't sit still. And I began to think I was drifting towards the horrific state I was in back in 1994! Anyway, the one bright spot in all this was the very positive posts that appeared in my thread on the Support forum. You cannot know (or maybe you can!) the positive power of those posts, and I will be forever grateful to those who took the time to write.
Since it did not appear that my tinnitus was going to let up, I did exactly what I tell my own TRT patients who relapse to do (and maybe 5% do relapse at some time or other). I started using a pair of broadband sound generators set exactly as you are supposed to set them in TRT. Meanwhile, I made an appointment with my audiologist so she could activate the "amplification
plus white noise" option on my hearing aids. (Back when I originally did TRT, I didn't need hearing aids. Nowadays my hearing thresholds have gone the way of my hairline, which ain't so good if you look at my photo! Thus, I have been using hearing aids
without white noise for several years.) As much as the support from this board helped my spirits, there is no question in my mind that following the TRT protocol for relapse (i.e., re-instituting sound therapy) was the crucial element in getting me back to where I was.
OK. So four days or so into my wife's trip I really lost it. I called her and through my tears finally told her what was going on. She said, "As soon as I get back, we will figure this all out." Since my wife was there with me all during my first tinnitus horror show in the mid-90s, that helped me emotionally, and I began to settle down a bit.
I probably have some of this out of order, but around the same time I heard from Jacqui Sheldrake in London. She had learned about my situation from one of her own TRT patients who participates on this board. Jacqui reviewed the important elements of the Neurophysiological Model with me. Even though I, of course, know the model cold, it was helpful to hear the material from somebody else. She also wanted me to be sure to have my hearing aids adjusted optimally, which I either had just done or was about to do. A day or so later I got a call from Gail Brenner in Philadelphia, who had heard about me from Jacqui. Gail was similarly very helpful. And I met with Dr. Jastreboff himself for an hour. Dr. Jastreboff went over everything from A to Z and gave me a few additional suggestions regarding my hearing aids.
Somewhere along the line I, of course, saw an ENT. I also had a complete audiogram (no change) and a repeat tinnitus pitch & loudness match.
Regarding sound therapy at night, I needed a sound source other than my hearing aid white noise output since I do not wear my hearing aids while sleeping. In fact, I actually like sleeping in silence - but that's not part of the TRT protocol. So I ordered a
Sound Pillow Sleep System, and while waiting for it to arrive, I used the "SimplyRain" app on my iPhone placed under my pillow. I really liked the Sound Pillow Sleep System, by the way. Nice concept.
In terms of
Tinnitus Talk, I checked my
"My Tinnitus Has Changed ..." thread fairly often for support - but I otherwise cut way back on my board activities, and I pretty much ignored the Doctors' Corner since responding to questions would require me to do more thinking about tinnitus and others' misery than I really wanted to do. As I suggested a while back in my
"Overcoming Obstacles to Habituation ..." piece, I really tried not to attend to my tinnitus or to things related to my tinnitus any more than absolutely necessary.
Which brings me to my tinnitus patients. I was able to move around the local patients' appointments as needed so I didn't do too much in the way of tinnitus on any given day, but I felt it unfair to move any of the patients who were flying in to see me from various parts of the country. So I just put on my "game face" and did the best I could do.
Anyway, after maybe 14 days of TRT sound therapy, I began to feel a bit better. And now I would say I'm doing quite well. My tinnitus - my
new tinnitus, that is - is still awfully loud. That hasn't changed at all, nor did I expect it to. But I am currently aware of it maybe 20% of the time I am not purposely seeking it, whereas earlier I was aware of it 99% of the time. And now when I become aware of it, it causes me little, if any distress., whereas before it pretty much tore me apart. I am back to my routine activities and once again enjoying life. I plan to continue the sound therapy for another three or four weeks, with the full expectation that my awareness will drop to 5-10% or so, which is about where it had been ever since I completed TRT the first time.
So the second time through TRT was, for me, like re-learning to ride a bike. Took hardly any time at all.
But the experience certainly got my attention!
stephen nagler
[Disclaimer: I have no direct or indirect financial relationship with the company that manufactures the Sound Pillow Sleep System.]
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