Before Tinnitus Retraining Therapy (TRT)

Hi. My name is TinnGuy - a guy with tinnitus as well as hyperacusis. I have started a treatment program called tinnitus retraining therapy (TRT) to hopefully obtain relief from these disorders. Let me give you some background information about myself so that you may understand what may or may not have contributed to the hyperacusis and tinnitus. Then I'll discuss the onset of these disorders, what I discovered about them, and the methods I used to cope with them before starting TRT.
BACKGROUND

I was born in 1934 with no congenital, genetic, or metabolic disorders.

I had the usual childhood illnesses (measles, mumps, and chicken pox). About 30 years ago I had an episode of hepatitis which was considered to be "infectious" hepatitis. This would probably be characterized as hepatitis A today. Since then I have had no significant illnesses until the abrupt onset of tinnitus in 1997 (more on that later). So I don't think there is anything in my medical history which could have contributed to my tinnitus. Other than ibuprofen for headaches or musculoskeletal discomfort, I have not taken any other ototoxic medications. By ototoxic I mean that there is a probable causal relationship between the use of ibuprofen in large doses and the development of tinnitus. The magnitude of this relationship is somewhere in the order of 1% to 3%. See http://www.rxlist.com/ for further details.

It is possible that noise trauma may have contributed to the tinnitus; however, the history of noise trauma is not dramatic. I grew up in southeastern South Dakota where pheasant hunting is a popular activity. I hunted pheasants with my father from age 12 to 20. I was exposed to the noise of 12 gauge shotguns during that time. In the military I was around large bore field artillery guns as well as automatic weapons, rifles, and handguns on a firing range; but, I wore noise protection at all times on those occasions. I have always worn noise protectors when using chain saws, diesel powered equipment, and loud power tools. As far as "social noise" is concerned: I have never been to a rock concert; I have never been in a disco; and, I have never been in a sports bar.

So noise doesn't seem to be important in the development of my tinnitus.

For a dramatic demonstration of what noise trauma can do to the outer hair cells (OHCs) of the cochlea, see the scanning electron microscopic views of normal and damaged OHCs at http://www.stud.uni-hannover.de/user/77370/sem2.html and http://www.stud.uni-hannover.de/user/77370/sem3.html, respectively.


ONSET

The onset is something I'll never forget. It was on October 1, 1997. Unknown to me, as there were no symptoms, I had otitis media in my right ear. On that date I was descending into an airport when I began to experience pain in my right ear. I wasn't able to relieve the pain with the usual maneuvers even after the plane was on the ground. About two hours after deplaning, my right eardrum ruptured and out came blood-streaked, gray-green material! The barotrauma combined with the otitis media was the cause of the eventual development of the hyperacusis and tinnitus.

For a good discussion of barotrauma, see http://www.bcm.tmc.edu/oto/grand/32395.html.

Over the next 24 to 48 hours, I developed moderate vertigo, became essentially deaf in the right ear, and began to experience hyperacusis and tinnitus. After antibiotics were started, the otolaryngologist put a tube in my right eardrum so the tear could heal and the right middle ear could drain. After three weeks of antibiotics, the otolaryngologist felt the infection was sufficiently well treated that I could handle being treated with steroids. He thought a course of steroids at a high dose would mitigate the damage to the cochlea. I was told about many of the complications of steroid treatment and, sure enough, I was a "complicated" case. Three days after the steroids were started, I perforated my descending colon which produced E. coli peritonitis. A segmental colectomy and a temporary colostomy were performed on October 22, 1997. On December 2, 1997 the temporary colostomy was closed and the colon was repaired. Eventually on January 5, 1998 I returned to work.

The time period from October 1, 1997 to the time I started tinnitus retraining therapy (TRT) was a period of discovery for me as my otolaryngologist had told me there was nothing to do about the hyperacusis and tinnitus. Not being willing to accept that opinion prompted me to seek information from the Internet. During this discovery period I came to know that I didn't have to just live with my fate.


DISCOVERY and COPING
  • October, 1997
  • I guess the month of October really got off to a slow start in terms of discovery and coping. What I discovered was that I was transported into an unreal world of misery. For instance, my newest friend turned out to be the toilet. Several days were spent crawling around on the floor to get to the toilet fast enough to vomit without messing up the carpet! After a few days of Antivert, which eventually controlled the vertigo and vomiting, I was able to devote more attention to my unwanted symptoms of hyperacusis and tinnitus.

    These new symptoms were strange and disturbing and my otolaryngologist didn't have comments about their cause and prognosis that were very comforting. He attributed the hyperacusis to the brain's reaction to my hearing loss as a way to compensate for the lack of sound stimuli from the right ear. The tinnitus he said was due to the bacterial damage to the cochlea. And, of course, the hearing loss was attributed the the cochlear damage as well. His prognosis for these problems was: (1) no change to be expected for the hearing loss; (2) perhaps some small improvement in the tinnitus; and, (3) hopefully some resolution of the hyperacusis with time.

    Before I really had a chance to grasp the significance and impact of these new features of my life, the month of October was abruptly interrupted by the colon perforation and the subsequent surgery.

  • November, 1997
  • After the surgery in October and finding a relative degree of comfort recovering in my own home as compared to the hospital, I began to probe the Internet with an intensity and curiosity never before known to me. My list of bookmarks expanded rapidly. I felt like I was becoming an expert on the topics of hyperacusis and tinnitus. But my new found knowledge didn't provide much physical or emotional comfort.

    During November I discovered almost all the usual sounds of my home environment were highly disturbing. My home is designed in such a manner that almost all activities of daily living are conducted in the country kitchen area of the house. That's where the TV, fireplace, and eating area are located, and all cooking activities are conducted. It didn't take long to categorize the sounds around me according to their ability to send my tinnitus into a screaming, raging torment.

    Sounds absolutely intolerable

  • Clanking of dishes against one another
  • Slamming cupboard doors
  • Water sounds - faucet, dishwasher, shower, toilet flushing (yes, I learned to run out of the bathroom as soon as the toilet was flushed)
  • Rapping of spoons against the side of a pan during cooking
  • Handling of paper or plastic bags and sacks
  • Tearing aluminum foil on the edge of a dispenser box
  • Opening a bag of potato chips, closing the bag, and eating them (too much crunch sound)
  • Clinking of ice cubes being put into a glass
  • My wife's hair blow dryer
  • Vacuum cleaners
  • Soprano gospel singers
  • Children's choir voices - actually any children's voices
  • People whistling (including myself)
  • Special effects movies - you know the kind I mean - those with 98% senseless noise, 1.5% drama, and 0.5% plot.
  • Sounds almost intolerable but barely endurable

  • Advertisements on TV - actually wore out the mute button on the remote control blocking them out. I'd like to have a chat with all the TV producers sometime and tell them that jacking up the decibel level of advertisements is actually counterproductive. Many of my "normal" friends comment that the stupid custom of making the ads loud is annoying and they keep a finger on their mute buttons, too.
  • Brushing my teeth
  • Shaving with an electric razor
  • December, 1997
  • Is each new month going to be worse than the one before? Sure seemed like it. December 2 was the return date for more abdominal surgery. Thank heaven for general anesthesia. At least I had a short interval of silence. After surgery I was placed in a room next to the nurse's station. I guess that was so the nursing staff could monitor me closely. This turned out to be a miserable experience as all kinds of noise is generated at the nursing station - talking, laughter, telephones ringing, and banging noises of all kinds. It did stimulate me to get mobile in a hurry. I was getting out of bed to shut the door about every hour. It was very difficult to "train" the different shifts of nursing staff personnel to shut the damn door when they left my room. Eventually I got to return to the relative quiet of my own home.

    Once back home, my discovery efforts on the Internet intensified. One significant result of my searching was the discovery of a book entitled "TINNITUS - Treatment and Relief" by Jack A. Vernon, Ph.D. I'm glad I got the book as it substantially confirmed my evolving attitude that I didn't just have to live with hyperacusis and tinnitus.

    During the month of December I joined the American Tinnitus Association and the Hyperacusis Network and began to receive informational mailings and journals from them. This was a real emotional boost for me as I was feeling particularly alone with my problems. The realization that so many others had the same problems was comforting.

    My new comfort level was soon shattered when I experienced the Christmas occasion at the home of my grandchildren. I was able to tolerate their exuberance for about four hours before feeling like my head was going to explode. Needless to say I was very depressed about the experience and began to wonder if my future life was going to have much quality subjectively. This concern was to be enhanced in just a few more days.

  • January, 1998
  • I returned to work on January 5 much to the dismay and disapproval of my surgeon. She had in mind a return-to-work date of March 1! I had used up all my paid sick leave and, if I hadn't returned to work on January 5, I would have started a period of unpaid sick leave. After 20 days of unpaid sick leave, my employment would have been terminated. So there was no choice but to return to work.

    The first day back to work was a huge shock. The noises of the usual office environment were totally overwhelming. Telephones, photocopiers, modems dialing, multiple simultaneous conversations, overhead music and public address announcements from the ceiling speakers, and heating ventilation noises were pounding away on my poor ears. By the end of the day I really just wanted to die. As a matter of fact I spent almost all of the following weekend staring off into space wondering about the wisdom and consequences of suicide. It was a terrible weekend only to be followed by having to return to work again.

    During the second week at work, I came to realize I needed to get support from some source. I called Dr. Jack Vernon and talked with him for almost an hour. I can find no words to accurately describe to you the warmth and reassurance of his advice and comments. I can only just tell you that for most of my conversation with him I was unable to speak because of my tears and chocked-up voice. By the time we had finished talking, I felt as if a whole new world had been opened up to me. He described to me how to identify and deal with sound that was too loud. He told me about a CD containing pink sound available at the Oregon Hearing Research Center which I got. He encouraged me to pursue tinnitus treatment of some form and finally got me to believe that there was hope somewhere down the road.

    The very same day I spent another hour talking to Dan Malcore at The Hyperacusis Network who also gave me hope for a better life. He was able to see through my tears on the phone and tell me everything I was wanting to know and hear without my asking. I hope these two gracious and compassionate men somehow knew that they saved the life of a very desperate person that terrible day in January. With new found faith and energy I was able to pursue the topics of hyperacusis and tinnitus.

  • February, 1998
  • Almost every spare moment during February was spent utilizing search engines on the Internet and reading and gathering resource material at the local medical library. The medical librarian was very helpful and I quickly found what I considered to be credible references on the subject of treatment of hyperacusis and tinnitus. I came to the conclusion that there were only two avenues to follow. One avenue was to pursue TRT(1) and the other was to find a surgeon to cut my cochlear nerve(2). TRT was the obvious choice! But how and where was I going to get TRT?

    I approached my otolaryngologist about the topic of TRT and was told he didn't think it would work and would not refer me to an otologist in a neighboring state who had been trained in TRT methodology at the University of Maryland at Baltimore. It would certainly be an understatement to say I was not happy! At the next office visit I brought with me an article written by Dr. Jastreboff et al(1) and insisted this should constitute sufficient support for a referral for TRT. No luck. I concluded I would have to abandon my primary care physician and the otolaryngologist and seek TRT on my own.

    I began to think I was going to have to take much more personal responsibility for finding solutions to my problems and quit relying on the otolaryngologist who rarely gave me any substantive or scientific information to help me deal with my symptoms. As an example, I observed that driving my car at city traffic speeds did not impact the intensity of my tinnitus. But driving at highway speeds made the tinnitus unbearable. I wore ear muff noise protection devices to avoid the impact on my tinnitus. I also made the observation that the road surface texture made a big difference on the overall effect driving had on the tinnitus. Newly constructed concrete highway surfaces were the very worst because of the wavy longitudinal striations put in the surface. I guess this is done to help prevent hydroplaning. The best road surface texture was newly laid blacktop. Then I discovered that a small amount of under inflation of tire pressure made the road noise worse because of the contact of that portion of the tire which essentially has no tread pattern with the road surface. Also a small amount of over inflation reduced the amount of road noise because only that portion of the tire with a distinct tread pattern makes contact with the road. Of course under inflation or over inflation produces abnormal tire wear and is not advisable. I discussed this with my friendly tire dealer and he told me that the tire manufacturer and the tread pattern are both very important and advised me to replace my tires with either Dunlop or Pirelli tires instead of the Goodyear tires I had. He didn't have any Pirelli tires in stock and they cost more than the Dunlop tires so I bought new Dunlop tires. What a difference that made. I no longer had to wear ear muffs anymore. I have since learned that Consumer Reports publishes a comparison test report of tires and the amount of road noise they make. I have not seen that report but assume one exists somewhere. As I got more and more analytical about the sources of sound about me, I was better able to protect myself from ending the day with raging tinnitus. But surely, I thought, there must be a more definitive method of dealing with hyperacusis and tinnitus.

    As another example of this period in my evolution in coping with the symptoms, I discovered there is a device known as an hyperacusis instrument manufactured by Micro-Tech. This little in-the-ear device can be programmed to limit the decibel level of all external auditory stimuli to a maximum tolerable level. I thought it was a great concept and considered it to be a suitable solution to my hyperacusis. I talked to an audiologist about it who said it would have to be worn for the rest of my life as it would do nothing for the tinnitus. I have no idea if this is true or not as I never got to anyone who could prescribe one for me.

    Well, I think you have gotten the picture of this period in my life. I had made several discoveries for myself which seemed to make a lot of sense and did so without much outside input or help. At least that made me feel good about myself and my own ability to make progress when professional help was ranging from little to none!

  • March, 1998
  • Now this was a very interesting month! For the first time I visited the alt.support.tinnitus (a.s.t) newsgroup on the Internet. I had avoided this newsgroup earlier thinking it was some kind of chat room thing and didn't think it would be anything of much help. I was astonished to see the wide variety of manifestations of hyperacusis and tinnitus. I was even more dismayed to see the wide array of recommendations and advice given to visitors of the newsgroup. After only a few days of monitoring a.s.t, I discovered there was a volatile and hostile environment surrounding the topic of TRT. It was right at this time that Dr. Nagler at the Southeastern Comprehensive Tinnitus Clinic made an offer of free TRT to someone selected by a.s.t in an effort to resolve a dispute about the outcome results reported for TRT in several sources. I was the person selected at random by the a.s.t group as the recipient for this offer and an appointment for the start of my TRT was made for July, 1998.

    During this month while observing the postings on a.s.t, I discovered that the use of Xanax was a commonly suggested treatment for tinnitus. This I found very puzzling as Xanax in the Physician's Desk Reference (PDR) is described as having tinnitus as a complication of its use - and at the magnitude of around 6% of users! Also the use of Xanax is an "off-label" use of the drug meaning it is not approved by the FDA for treatment of this disorder. I questioned my otolaryngologist about Xanax and how it might be efficacious in the treatment of tinnitus and he said it was simply an empiric observation and no one knows how it really works if, indeed, it does. He didn't consider it's use to be worth while. I prevailed upon him to give me a prescription for Xanax and he did. He prescribed 0.25 mg three times a day and gave me a prescription for ten days. He cautioned me that it was highly addictive. I made no comment to him but thought BFD - so what if it is addictive. If it works, who cares. Sort of like saying insulin is highly addictive for diabetics. In any event, a dose of 0.25 mg three times a day did absolutely nothing at all for my tinnitus. At the next office visit I told him the Xanax was ineffective and that perhaps the dose ought to be somewhere in the PDR recommended range for other disorders of around 1.0 mg four times a day. He condescendingly gave me a prescription for that amount. That dosage level did nothing more than make me fall asleep a little earlier in the evening news programs than usual! So after about two weeks I quit taking it and concluded it "works" - whatever it is supposed to do - only as a placebo based on the power of suggestion.

  • April through June, 1998
  • During this time period I elected to quit my job and retire and try to enjoy life away from office and city noises. I live about 35 miles from any city concentration. This respite from the everyday hustle and bustle of commuting and dealing with city/office sounds was wonderful. I began to think maybe I didn't need TRT as I could reliably prevent the onset of raging tinnitus by avoiding offensive sounds. And, if by chance the tinnitus got out of control, a simple nap or a good night's sleep would put me back to a tolerable base line state.

    Also during this time period I did a lot of outside work on my property which involved use of chain saws, diesel-powered equipment, and other loud tools. I wore noise protectors which had a noise reduction rating (NRR) of 29 decibels during a regular 10-hour working day and experienced no increase in the intensity of my tinnitus until stepping into the shower at the end of the day! Water noises, including a simple shower, are really intolerable.

    July would bring a most pleasant surprise.

  • July, 1998
  • Off to see the wizard - well, you know who I mean. Dr. Nagler, of course!

    Begin The Adventure

    TINNITUS RETRAINING THERAPY

    REFERENCES
    (1) Jastreboff, PJ, Gray, WC, Gold, SL. Neurophysiological Approach to Tinnitus Patients. The American Journal of Otology 1996; 17:236-240.
    Abstract: The principal postulate of the neurophysiological model of tinnitus is that all levels of the auditory pathways and several nonauditory systems play essential roles in each case of tinnitus, stressing the dominance of nonauditory systems in determining the level of tinnitus annoyance. Thus it has been proposed to treat tinnitus by inducing and facilitating habituation to the tinnitus signal. The goal is to reach the stage at which, although patients may perceive tinnitus as unchanged when they focus on it, they are otherwise not aware of tinnitus. Furthermore, even when perceived, tinnitus does not evoke annoyance. Habituation is achieved by directive counseling combined with low-level, broad-band noise generated by wearable generators, and environmental sounds, according to a specific protocol. For habituation to occur, it is imperative to avoid masking tinnitus by these sounds. Since 1991, more than 500 tinnitus patients have been seen in our center. About 40% exhibited hyperacusis to a varying degree. A survey of more than 100 patients revealed >80% of significant improvement in groups of patients treated with the full protocol involving counseling and the use of noise generators. Notably, in patients who received counseling only, the success rate was less than 20%. The improvement in hyperacusis was observed in ~90% of treated patients.

    (2) Pulec, JL. Cochlear Nerve Section for Intractable Tinnitus. Ear, Nose, & Throat Journal. 1995; 74(7):468-476.
    Abstract: Tinnitus is a common and very disturbing symptom. The majority of patients can now be successfully treated either by conservative medical treatment or by specific surgery. Intractable subjective tinnitus originating within the cochlea or cochlear nerve can frequently be successfully treated by cochlear nerve section. The cochlear nerve must be severed medial to the spiral ganglion to obtain optimum results. One hundred fifty-one cases are reported. Complete relief of tinnitus was achieved in 101 patients, worthwhile improvement was obtained in 43 patients and 7 patients obtained no improvement. The indications for this surgery will be given. Careful examination, accurate diagnosis, and proper selection of patients with intractable tinnitus for cochlear nerve section offer a good chance for success.