Interview with Carol Lee Brook Author of 'TORTURED BY SOUND - Beyond Human Endurance'
AO/Beck: Hi Carol, please tell me why you wrote the book TORTURED BY SOUND -Beyond Human Endurance ?
Brook: I originally started writing Tortured By Sound as a form of therapy, to get my mind off pain from afflictions worse than anyone could imagine. A first, I wanted to vent my feelings and describe how no one would help or even believe me. Then, I realized how little was known about my condition and how many people are tormented by something that has existed for thousands of years. I gradually began to recover and I realized I had to tell the world no one has to suffer from tinnitus any longer. I became a messenger.
AO/Beck:Please tell me your definitions for tinnitus and hyperacusis.
Brook: I think of tinnitus as ringing in the ears. Tinnitus is only a small malfunction of the auditory system and in and of itself it is nothing physically dangerous. But the torture and havoc that this condition presents, can and does destroy lives! Tinnitus sufferers are told, Go home and learn to live with it! Some commit suicide. Who would believe that ears can torture and kill?
My past tinnitus condition started with one high-pitched tone eeeeee, like my deceased father's electric saw. I heard loud booming noises followed by a drum roll. During the following weeks, the condition progressed with new sounds. I heard church bells, high frequency beating tones, lower frequency harp tones, hissing and swishing noises. My tinnitus progressed to a cacophony of l2 sounds. These sounds bounced up and down to the exact beat of my tinnitus and they were magnified by my hyperacusis. Hyperacusis is a gain in the auditory system and/or sound intolerance. It is the flip side of the coin with tinnitus. About 30% of the people suffering from tinnitus have hyperacusis. Some have hyperacusis by itself, but many suffer from both conditions at the same time. Hyperacusis can be a pre-tinnitus condition, and if recognized, a warning signal. It could have been for me had I understood my symptoms. Hyperacusis was a surreal experience. I was hearing every sound in the world magnified a thousandfold, i.e., a cat meowing was like a lion roaring, my own footsteps sounded like those of a dinosaur, the water from the faucet resembled Niagara Falls. A quiet room resounded like an amusement park! I couldn't tolerate the sound of a pin dropping. No one believed my pain, and the doctors were not able to help me. I wanted to die to end my unbearable tortures.
AO/Beck: The book reads like a novel, and I think that makes it easier to read than the textbook approach, can you tell me why you approached it that way?
Brook: I was told before I started formatting the book that a publishing company would only be interested in a book written based on facts, describing my doctor's discovery, treatment, and my recovery. I was asked to soften and downplay all the uncaring actions and feelings from doctors, past friends, and even how I portrayed my husband. I refused to be swayed by anyone. I thought my story should be written exactly like the awful drama it was. I wanted people to understand the horror and how I had to fight to live from day to day, against what seemed to be unbeatable odds. It seemed I had to fight an equal battle to write and produce my story the way I wanted. Five long years after the start, Tortured By Sound was exactly as I wanted it, along with my husband's complete support.
I refused to embellish the story. I needed to be true to myself. I had one incredible man's words replaying over and over in my mind to justify my decision to write exactly what I had experienced: Dr. Pawel Jastreboff said, Just tell the truth. I did and I have absolutely no regrets. But I also still have no publishing company approaching me! Some companies liked the book, but they haven't made an investment in the topic. It's hard to get anyone excited about ears, let alone malfunctioning ears!
AO/Beck: Carol, in the book you talk about many dramatic moments.....Can you describe the most important moments, the turning points, the moments that have the most meaning for you?
Brook: My most important moments would have to be not succeeding with my thoughts of suicide. I describe in detail the suicide of a successful internist, Dr. Elliot Rosenberg--from his intolerable level of hyperacusis. He remains in my heart. I was devastated by his act, and his death was confirmation that his fate would undoubtedly be my own. I hit rock bottom emotionally.
Also, among my most important moments would be each and every word from Dr. Jastreboff, by phone and fax. His words motivated me to stay alive just a little bit longer each time until his treatment could take effect. He gave me back my life.
AO/Beck: Can you review some of the therapies you tried for tinnitus?
Brook: I started visiting my internist when my condition broke loose, followed by visits to perhaps a dozen well-known ENT's in my area. When no one could offer help, I was forced to take matters into my own hands. I intuitively knew that my life was not going to be long lived without a solution. I hopped onto a plane and went to a poison center in Dallas where agent orange victims were being treated. I subjected myself to scalding sauna treatments and a series of intravenous injections treatments. I even learned how to inject myself with serums I was told could make me well. After months of additional torture from useless remedies for my condition, I came home dejected. I started buying every book and journal I could find which listed tinnitus treatment help, and tried them all: homeopathic, acupuncture, chiropractors, an orthomolecular MD with a psychiatry degree who had me pour lidocaine and DMSO down my nose and throat and swallow over thirty huge capsules a day. He finally overdosed me with niacin and produced a high liver reading which ultimately resulted in a ten day mental ward stay. A nurse in the psychiatric ward referred me to a TMJ doctor. I escaped from the hospital only to let a dentist specialist shift my whole jaw around, claiming he could rid me of tinnitus. I even allowed this doctor to inject numbing solutions into my jaw joints, not thinking I could be scarred for life on my face. There was nothing too dangerous for me to plead for and try. I was desperate to get my life back.
AO/Beck: After quite a long time, you found a tinnitus therapy that helped dramatically. Which therapy was that, and what can you tell us about it?
Brooks: Dr. Pawel Jastreboff's discovery and treatment protocol, called TRT (Tinnitus Retraining Therapy) ultimately saved my life. The way I found Dr. Jastreboff suits my novelistic format -- as it was by accident. Dr. Jastreboff stayed with me practically all day by phone and fax, giving me instructions and encouragement. He was my incentive to endure the torture. After some time I was instructed to place an outside sound into my auditory system, which is described in detail in the book. Of course, keep in mind that I couldn't tolerate a pin dropping, so the additional sound generator was as loud as an outboard motor! I had to listen to the sound generator in addition to l2 tinnitus tones. Who wouldn't think of suicide under those conditions? It was more torture than could be imagined. It was Beyond Human Endurance. I believe I am proof that TRT works. It brought me full recovery and it can do the same for anyone, provided it's done properly. The treatment is non-invasive and non-chemical. It consists of counseling and instrumentation. For the average person with hyperacusis, the instrument generates a low tone which the brain habituates to (ignore) along with, eventually, the tinnitus. That is the desired result of TRT.
With TRT, the brain is trained to refocus off of the tinnitus, making it an unimportant sound. Through time, with the sound generators and the correct counseling protocol, tinnitus gets filtered out along with other normal sounds a person hears each and every day which the brain determines are unimportant. As a result, the tinnitus drops so low that you have to strain to hear it, even in a quiet room. TRT was for me, also the total cure for hyperacusis. Even though tinnitus is still in my auditory system and it cannot be removed, my tinnitus is now so low in volume that I barely remember I have it. As far as I'm concerned, this is as close to a cure as you can get.
AO/Beck: Is there something you do every day or two to maintain your successful tinnitus management?
Brook: I don't need to do anything every day or even every two days to maintain my successful tinnitus management - I'm done! Permanently finished! I haven't worn the sound generators for 5 years and I know I never will again. I try to enjoy life to the fullest doing everything I love to do. I square dance regularly, and I go to lots of movies. I love all kinds of live stage performances. I swim and bike ride regularly. My suffering is a thing of the past, but I'll never forget. And I'll never stop trying to help as many as I can.
AO/Beck: Carol, do you have recommendations for other people trying to find a solution for their tinnitus?
Brook: I'd like everyone to know .... I was dying. I had perfectly normal hearing. Dr. Jastreboff really and truly did save my life and brought me to a complete recovery through TRT. I want everyone to know there is help, and Tinnitus Retraining Therapy is Dr. Jastreboff's gift to mankind. I hope people will want to read my true story in Tortured By Sound: Beyond Human Endurance; and that they'll be inspired to remember my wonderful doctor and to get relief through TRT.
AO/Beck: Carol, for more information, what is your website address please?
AO/Beck: Thanks for sharing your story Carol. I wish you all the best!
Brook: Thank you too, Dr. Beck. Thanks for letting me help spread the word about hope and success!