My Own Story
Dr. Stephen Nagler.........
More than twenty years ago in a desperate search for relief from the omnipresent thunderous roaring in my ears (and having tried most everything else imaginable), I eventually found my way to Tinnitus Retraining Therapy (TRT).
Thinking back on my personal experience as a tinnitus sufferer undergoing TRT, I cannot adequately convey how truly pessimistic I was about the whole thing. I figured that
my tinnitus was likely the worst tinnitus
anybody could possibly have and that those who succeeded in TRT could not possibly have had
my tinnitus or anything close to it. Combine that with the fact that my progress in TRT was quite slow, and it was a miracle that I managed to stick with it at all. I was very fortunate, however, in three respects.
The first fortunate thing for me was that there was only one person in the US who offered TRT at the time I went through it as a patient in the mid-1990s. And even though that individual's clinic was in Baltimore some 700 miles from my home, it was Dr. Pawel Jastreboff himself. In other words, I was assured that my TRT clinician was top-notch, because it was he who invented TRT in the first place. Today, as I suggested in my article
Tinnitus Retraining Therapy, you really have to do some homework to be sure that you are in knowledgeable and capable hands.
I was also fortunate in that I had the unconditional love of my wife and family. That love nourished and sustained me not only through TRT, but throughout my entire tinnitus odyssey.
My third advantage was that when I was a TRT patient, Internet tinnitus "support" was only in its infancy. I put the term "support" in quotes because all-too-often Internet tinnitus support, and here I am referring specifically to the
Tinnitus Talk website, amounts to the polar opposite of support. I am as serious as a heart attack when I state that were that particular reservoir of negativity, misinformation, and ignorance in existence when I myself went through TRT, then no doubt I would have been drawn to it like a moth to a flame, and no doubt I would have given up on TRT without having ever allowed myself the chance to succeed. TRT can take up to a year or more to become maximally effective, and while one can sometimes enjoy appreciable improvement reasonably early on, for me there was little, if any, improvement for many months. So other than the fact that I had an outstanding TRT clinician as well as an incredibly devoted family, I would have to say that the single best thing I had going for me was the absence of Internet tinnitus "support." You do not have to take some sort of leap of faith for TRT to be effective. But you do have to fully follow the protocol even if you have some doubts. Bottom line: I never would have stayed with TRT long enough to benefit had
Tinnitus Talk been around back then, confusing readers with its pseudo-intellectual gibberish and trying to convince them that rather than "wasting their time" with effective protocols like TRT, they should be turning instead to lasers, stem cells, infusions, magnets, supplements, potassium channel openers, or perhaps some worthless product manufactured by one of
Tinnitus Talk's sponsors.
These days as a tinnitus clinician I frequently ask those who contact me for advice and assistance where in their opinion they would fit on a 1 to 10 scale, with 1 being "I have tinnitus and I'd prefer not to have tinnitus but in the grand scheme of things I don't care much one way or the other because my tinnitus doesn't bother me," and with 10 being "I have tinnitus and my tinnitus has totally, completely, permanently, and irrevocably destroyed my life." Well that scale is my own. It is not published anywhere; I just use it to get an overall feel for things when I first evaluate a tinnitus patient. Anyway, over time Dr. Jastreboff (the gentleman who developed TRT and who had been my TRT clinician) and I have become friends. We met for lunch a year or so ago, and I happened to tell him about my little 1 to 10 scale. He sat back and sort of chuckled. I asked him what was so funny, and he told me that nothing at all was funny - but back when I started TRT, he would have put me at around a 15!
For more details regarding where I was on TRT Day One, please see
A Patient's Perspective.
Now, on to my actual TRT experience ...
Tinnitus Retraining Therapy has two components: sound therapy and TRT counseling, the latter of which is essentially an individualized bidirectional educational process based on the Neurophysiological Model of Tinnitus. I determined that if I was going to invest the time and expense in TRT, I was going make every effort to follow both the sound therapy and TRT counseling protocols to the letter, which is precisely what I did.
The sound therapy protocol for my particular TRT category involved wearing a pair of broadband sound generators all day long every day. These devices were quite large and bulky - around three times the size of the tiny units used today - but I really didn't care. All I wanted was to get better. I would have worn Mickey Mouse ears if that is what the protocol required! I was instructed to set the devices each morning at the "mixing point," but I found that I could not do that because my tinnitus was so loud - so I set them each morning at the loudest volume that was not annoying and that did not interfere with communication, which is what I was told to do were I unable to set them at the mixing point. Also as instructed, at bedtime I removed the devices from my ears and simply turned on a tabletop unit with white noise or nature sounds that would play softly throughout the night. I followed the above sound therapy protocol religiously.
The counseling/education component in TRT is equally important as the sound therapy component. The protocol called for me to have an initial session with Dr. Jastreboff in Baltimore after which I would return to Baltimore for follow-up TRT counseling at three-to-four-month intervals throughout the treatment process. (Today some TRT clinicians can arrange to conduct the follow-up sessions by phone or Skype for patients who live at a distance, but that was not an option for me as a TRT patient myself more than 20 years ago.) I reported for the initial and follow-up TRT counseling sessions exactly as the protocol dictated. Some of the follow-up was repetitious, reinforcing what I already knew (or correcting what I thought I knew but had wrong!) But much of the follow-up was devoted to interpreting what I was
currently experiencing with my tinnitus in a light that was consistent with the Neurophysiological Model. Interestingly and significantly, it was a week or so after my third follow-up session - roughly at the eleven month point in TRT - that things finally began to fall into place for me. So in my opinion the importance of follow-up TRT counseling cannot be over-emphasized.
I wish I could tell you precisely what I mean when I say that things began to "fall into place" after my third follow-up counseling session, but it's a bit difficult to put into words. Maybe the best way to describe it is that I noticed I wasn't being as meticulous or disciplined about wearing my devices according to protocol as had been my previous routine. Indeed, some days I was forgetting to put them in altogether. I knew, of course, how important the devices were to facilitating the habituation of my tinnitus, and putting them in and setting them each morning was quick and easy. So why was I forgetting? And then it dawned on me that the only possible reason I would be forgetting to put my devices in was that I was becoming less aware of my tinnitus and moreover that wearing them was becoming more of a hassle than my tinnitus. But wearing the devices was really no hassle at all! Which, if you think about it, is sort of a rudimentary definition of habituation of reaction and habituation of perception: I was reacting to my tinnitus less and consequently I was becoming less and less aware of it.
The end result? Instead of being a 15 on that 1 to 10 scale, today I do not even look at it in terms of numbers. For sure my tinnitus today is every bit as loud as it was when I started TRT - like a 24/7 cross between a screaming teakettle and a roaring jet turbine. For sure my tinnitus today can interrupt my thoughts and distract me from time to time, which is why I would make a terrible diamond cutter, tightrope walker, or brain surgeon. But today I am largely unaware of my tinnitus as I go through my day, and when I do happen to suddenly become aware of my tinnitus, while it can totally and unpredictably distract me, it causes me little in the way of distress. Today I no longer view the world through the prism of my 24/7 loud screaming teakettle roaring jet turbine tinnitus; today I view the world through the prism of life. And that is what TRT did for me.
Dr. Stephen Nagler
Atlanta Tinnitus Consultants, LLC Category: Success Stories