This is Adam's Story
Hey everyone! After 10 and a half months of suffering from Hyperacusis, I can gladly say I made a full recovery through TRT, CBT, emotional support from my loved ones, and a positive mindset. I created this video to share my experience with hyperacusis on how I personally recovered. I wish you all the best of luck and I want to let you know that hyperacusis is NOT always a chronic condition. Click on this youtube link to hear my story:
This is Rob's Story
I'd like to tell you about my experience with hyperacusis. When I try to characterize how it was for me, a number of words come to mind: ordeal, excruciating, painful, sorrowful, frightening, harrowing, frustrating, indelible, inimitable and depressing are a few. When I first got it, my hyperacusis was moderate, at best, and I also had pain in my left ear that scared the crap out of me when it didn't go away.
It took my seeing five doctors, each of them experienced and intelligent, before I was diagnosed with hyperacusis. Prior to my diagnosis, one of the doctors, a highly regarded and thorough neurotologist I had seen several years earlier, examined me, administered several tests, and insisted that I get an MRI before he would treat me further because he believed there was a considerable possibility that I might have an acoustic neuroma. I am a very motivated person, and at the time also a very scared one, and so the next day I got an MRI.
The experience was excruciatingly painful, but I felt compelled to withstand over 45 minutes of dangerously loud sound because 1.) when a well-respected doctor tells you there is a substantial chance you have an acoustic neuroma, it scares you sideways; 2.) I was already scared sideways due to my decreased tolerance of sound and continuing ear pain; and 3.) I badly wanted and needed professional help, and the only way the doctor would continue to treat me was if I had an MRI. So, I withstood the MRI, without wearing hearing protection as the well-respected, intelligent, and thorough doctor failed to tell me that it was essential for me to wear properly-inserted earplugs with a high noise reduction rating. (A few days later, he told me over the phone that there was no way an MRI could further decrease my sensitivity to sound. He was quite wrong about this, of course, and I fired him.)
Because this clinician was ignorant of such a basic thing, my life changed. Every symptom I had was wildly exacerbated because I was exposed to dangerously loud sound. Moderate-at-best hyperacusis with ear pain is difficult enough, but very severe hyperacusis along with very severe, excruciating ear pain that could last for days, weeks or months following exposure to certain aural settings, put me in a world of harrowing physical pain that was so frightening that, for a long time, I lived as if I was in mourning for myself. I was, and am, a musician and was in the middle of a project in a recording studio when I developed hyperacusis, and I couldn't imagine ever being able to tolerate setting foot in a recording studio again, much less listening to and enjoying music at home. The sound of some people's speaking voices, male and female, was intolerably painful. Many normal, everyday sounds we all once took for granted felt immediately painful or uncomfortable upon hearing them, and exposure to some sounds and aural settings caused ear pain that lasted for days, weeks, and months at a time.
The only reason I was able to successfully gain back most of my sound tolerance and no longer experience lasting ear pain is because I am as motivated as the day is long and I wouldn't take "no" for an answer. No matter how frustrated and terrified I felt when I had repeated setbacks that sometimes left me feeling I was back at square one, no matter how long it took, and how many times I needed to make an adjustment in treatment or in my own thinking, I would not let myself give up. There is a lot we don't know about hyperacusis. I could have focused on that, as some do, but I chose to focus on what could be done, on what I could do. It is easier to throw in the towel, and understandable, and I was having none of it.
I took my time educating myself about hyperacusis, tinnitus (which I developed later), Phonophobia, misophonia, ear anatomy and physiology, possible causes and treatment for ear pain, cognitive behavioral therapy, mindfulness-based cognitive therapy, the neuroscience of tinnitus, and any book or paper I could get my hands on that could teach me about my challenges and my options for putting them in the rear view mirror. To this day, I remember when electrocochleography is administered and the ratio of the summating potential to the action potential of the cochlear nerve is greater than one third, endolymphatic hydrops is indicated – another challenge in my auditory/vestibular grab bag.
I learned about my options from my reading and from the doctor who diagnosed me with hyperacusis. He told me about TRT, and I learned much more about it by reading and re-reading Dr. Jastreboff and Mr. Hazell's book. I learned about the application of pink noise to treat hyperacusis by reading about it in a book written by Dr. Vernon and Barbara Sanders, and from a number of posts by several people on this site. In Europe, several clinicians treated patients with decreased sound tolerance with cognitive therapy, and so I read about that too.
I considered TRT, but first I learned the specifications of the wearable generators used to emit broadband noise that are used in TRT and I worked with a couple colleagues to replicate the presentation in a recording studio. I was unable to tolerate it even when played very softly, without experiencing immediate ear pain and the sensation of having something deep inside the ear that doesn't belong there. As a result, I chose not to do TRT.
I got hold of a copy of the pink noise Dr. Vernon used with decent success to treat hyperacusic patients. I played it for about ten seconds and felt profoundly dizzy. In fact, I could barely stand up. When a mastering engineer and I examined the pink noise with some specialized studio equipment, we discovered 1.) the pink noise was very poorly made and 2.) it had a much, much higher high-end than the specifications noted by Dr. Vernon in his book. We created a pink noise CD that matched the specifications described in Dr. Vernon's book. I was unable to tolerate that too. It hurt to hear. I felt like I had reached a dead end.
I knew I needed help with hyperacusis. But it seemed the best options available to me wouldn't work for me. I kept reading and listening. One experienced clinician graciously took over an hour of his time to talk to me about hyperacusis, at no charge. I learned a lot from that conversation.
I was at a crossroads. I could either throw in the towel, now that I had looked into my options, done my due diligence on each one, going so far as to replicate the broadband noise presentations I would have used, and concluded that I was unable to physically tolerate any of them. Or I could get creative. One year had gone by at this point, and my sound tolerance had not improved by itself. I decided my best chance of recovery was to create a pink noise presentation I could tolerate, and that's what I did. I started with something that caused no pain or discomfort, and worked my way up to using it for eight hours a day. I followed some of the tenets of TRT, and came up with a few of my own. Every month, I slightly increased the volume of the broadband noise presentation I worked with. Every three months, I slightly increased the high-end of the presentation and started again at the lower volume. It took a very long time, but eventually I was able to use the same presentation used in TRT, which we also re-created in a recording studio – and later on, I was able to surpass it.
I also put myself out in the world from day one and did the best I could, despite the setbacks and the daily exposure to so many sounds that were too loud for me and caused pain or discomfort. As best I could, I avoided settings that were too much for me.
Over time, I realized I had developed certain inevitable feelings about sound exposure that were having an enormous and counterproductive impact on me. Before I developed hyperacusis, I was something of a "gym rat" and loved to lift weights and challenge myself. I applied some of the tenets of progressive weight training to come up with a protocol that involved listening to music to treat the emotional response to sound that accompanied my hyperacusis. My protocol was about giving myself a measure of control over sound and slowly proving to myself that I could let go of the feelings and beliefs I had developed about the dangers of sound. (A couple years later, I consulted Dr. Jastreboff on another challenge I was having, read a copy of his misophonia protocol that he had in the office, and nearly fell off my chair because in some respects it was very similar to my own protocol for re-calibrating one's emotional response to sound.)
I hired a very experienced, compassionate and supportive audiologist who not only worked with Dr. Jastreboff, but also had his own private practice. I bounced ideas off him and, most important, had him administer my LDLs from time to time so I could check my progress and use the results to fine-tune my treatment. I learned from him that had I done TRT, I would have been regarded as a Category 4 patient. When I started therapy, my LDLs were in the mid 30's and mid 40's.
I remained fiercely focused on the goal – to eventually be able to do the things that I once took for granted, and to live a normal, full life. Nothing and no one kept me from moving forward, as best I could, for as long as it took – not even myself. I went about it by being methodical, patient, consistent, and unstoppable. As my treatment progressed and I became sure of myself and felt certain I was on the right path, not even the well-intended advice of very knowledgeable clinicians with long experience in treating other hyperacusics kept me from moving forward one step at a time. When their advice wasn't right for me, I considered it carefully and put it aside, opting instead to do things by my own lights. Over time, my approach worked. The last time I had my LDLs checked, they were all in the 90s and 100s.
I had many reasons to give up, some of them pretty good ones. But I never did, not even when things were at their most terrible and I spent my days in a kind of mourning for myself.
Each of us has an inner narrative. For instance, a tinnitus sufferer may tell himself the reason he is unable to habituate tinnitus is because his tinnitus is much louder than practically anyone else's. It is a logical explanation, in its way, and an understandable conclusion to reach, and his narrative serves to explain to the sufferer why he can't find relief. But the strong likelihood is that his tinnitus is no louder than anyone else's.
"No" was never part of my narrative. I had a complex case, with all sorts of auditory and vestibular issues, some which preceded hyperacusis and some which inevitably accompanied it. Even so, the only one who could stop me - was me. Not my challenges, which were extensive, or my LDLs, which were very low, not the cluelessness or insensitivity of certain doctors (who could have done everyone a favor by making a mid-career switch to becoming greengrocers and leaving medicine to the adults), not someone on a health support board with a different viewpoint, and not even the ear pain that I lived with 24/7 for six or seven months after one particular setback that was so emotionally debilitating it shook my confidence and caused me to wonder many times whether I should consign myself to living in pain for the rest of my life. Fortunately, giving up on myself wasn't part of my narrative either. Eventually, I figured out why I was experiencing the ear pain and what to do about it. I haven't had any ear pain in several years.
I like to say that treatment isn't hard, but all the other stuff it can take to recover may require a lot of work. By the other stuff, I mean taking the time to learn about the condition, learning about the different options to treat it, making the (sometimes very difficult) choice to get into therapy, choosing the right clinician and doing whatever it takes to work with that person, and sticking with it. Perhaps the hardest thing of all, the thing that requires the biggest emotional investment, is to never give up no matter how many setbacks we have, no matter how long they last, or how bad they feel, no matter how defeated we can feel at times, and no matter how tempting it is to throw in the towel and consign ourselves to a constricted life and pinched beliefs. It is so important to try to keep an open mind, not only about our options, but about ourselves.
This is Andrew's Story
I used to peruse this board fairly frequently a couple years ago. I have returned only to share my story for those who are in the same place I was during those dreadful days.
I have been a musician my whole life. I started playing piano when I was 3, moved on to clarinet at age 8, and pursued my passion all the way through college. After graduating, I began writing and producing music all the time. I felt like I had finally found what I was really meant to do.
I started at a university to get a degree in audio engineering. I was happy to be seriously pursuing something I loved. About 3 months after starting this new career path, I went to Disneyworld with my family for Thanksgiving. When we were in line for one of the rides, I started to notice the PA speakers were uncomfortable to listen to. My right ear felt cloudy and almost numb. It wasn't particularly painful, but it was odd. I shrugged it off and continued to enjoy the vacation.
When I returned home a few days later, the hyperacusis hit me full bore. All the sounds around me became painful--dishing clanking, the radio in my car, the studio speakers in my room, even the tv if it was a little too loud. I tried to ignore it or hope it would go away, but it did not. As I wrapped up my first semester at this new school studying to become an audio engineer, I could not even stand to listen to music. I was in a dreadful place.
I continued to sleep-walk through life for the ensuing months. School was like rubbing salt on the wounds, given that I could barely participate in the studio work we were doing. After doing some research online it quickly became obvious to me that I had hyperacusis. I saw an ENT, who admitted honestly to me that he did not know much about H, so he referred me to a neuro-otologist. The neuro-otologist was a very knowledgeable fellow, and he explained to me the mechanism of tinnitus and hyperacusis. He was not aware of Tinnitus Retraining Therapy, but encouraged me to pursue sound enrichment as much as I could.
Eventually, I reached the breaking point in my life. Either I was destined to suffer for all eternity, or to give everything I had to beating this thing. So in March of 2012, I made a life-changing decision: I would subscribe totally to the philosophy of TRT for 18 months. I would give everything I could to follow this therapeutic approach, and when it was all said and done, I would accept and live with the results.
From that point on, I had my ipod earbuds in my ears, playing low-level pink noise, every second of every day of every week of every month that I possibly could. I did not go out and socialize, I did not date, I did not go to concerts, I rarely left my bedroom other than to attend class. In many ways, I became a shell of a human being, but one that was operating under the strictest conviction that his actions were necessary.
For the first 6 months, there was no improvement. I was despondent and utterly apathetic. I became ugly inside, cold towards the world, and hateful in a way that I will never forget. All these people who could live their normal lives without the specter of a disease bearing down on them at a moment's notice. I cursed them for their ingratitude. I would be lying if I did not think on one occasion of the knife in the kitchen.
However, I made a promise to myself to see it through. I had read that improvement is very slow at first, and, if nothing else, why stop after already investing 6 months into it? So I continued on, with my two white earbuds--indeed the only friends I had left in my life--to finish what I had started.
It was after the 6-month mark that things changed. The television was not quite as abrasive as it had been. The dishes clanking was no longer to be the dread of my evening. Though far from benevolent, these things were increasingly tolerable.
Around the 9-month mark, improvement was swift. I could once again go out in public and enjoy myself. I was always very cautious, but there were brief moments of freedom that I had not felt in a very long time. I remember going to see a movie with my parents, and not needing earplugs. It might seem like a minor thing, but it was a palpable moment for me. The kind of break-through that can temporarily erase months and months of disciplined agony.
The ensuing months were a continual blessing of small improvements along these lines. I continued to live with my earbuds, but I could increase the volume of the pink noise a little more than before. Eventually I found the perfect equilibrium, where the pink noise was just about equivalent with the ambient noise around me. Neither was masking the other--they lived alongside one another.
After about 15 months of the Tinnitus Retraining Therapy, I had a talk with my parents about life. They could obviously tell I was depressed, that I avoided social situations, that I was living in my bedroom, and that I was generally unhappy. This was an extremely emotional conversation for me. I broke down crying. This was the first time since I was struck with hyperacusis that I cried. I had never felt like a victim because I am too prideful for that. But this was coming from a different place. I was crying because I knew I was putting my life on the back-burner. It's an odd thing, when you work so hard at treating a disease. When you are at the threshold of conquering it, you are hesitant to lay the fatal blow. I had grown accustomed to being the earbud-clad recluse. It was all I knew to be after 15 months.
We came to the decision that I needed to move out of the house, drop out from school, move back to my original home in Houston, live on my own, get a job, and become a functioning adult. The decision was easy and obvious, and I knew it was the right thing to do. Just a few weeks later, I was living on my own, with a job to support myself.
As far as the TRT is concerned, I quit cold-turkey when I moved to Houston. After 15 months of strenuous dedication, I knew that those earbuds were only holding me back. Though I will never forget what they meant to me, what they did for me--I no longer needed them.
From where my hyperacusis was at its worst, I would consider myself 85-90% better. It will never go away completely. I am still careful around sounds that I know are too loud. Some sources are still intractably uncomfortable--car stereos and heavy sub-bass being among them. But I can tell you with a smile on my face, that I have not worn earplugs in months. I go to concerts, bars, sporting events, and a host of other loud activities and I barely break a sweat. To be where I am today, is the true definition of a blessing. I can work on music to my heart's content--provided the levels are reasonable.
I leave with you a few words of advice. If you are suffering from hyperacusis, do TRT for at least 12 months. Just do it. Don't try and rationalize why you should not do it. Don't think there is a magic bullet in the haystack. Most important, don't allow yourself to buy into the victim mentality. You are not a victim. You are the protagonist in a play. The more crap that is thrown at you, the greater your success at the conclusion. Be cognizant that it takes a tremendous level of dedication to listen to pink noise for 15 months without a break. Do not enter it lightly. Do not start it without finishing it. You will get nothing for 6 months. Do not let this fact break you. You will get your life back, and it will be like you were born again. You will burst forth from your cocoon a more beautiful, soaring butterfly than you could ever imagine. You will not know true happiness until you experience that first divine moment of freedom from your disease. But the onus and effort is on you. Rise above this and you will stand above all others, for you have earned your life, your freedom, your right to listen to all the world wants to tell you.
This is Minor's Story
It is time. After a few years of *running* from the fact that someday I would need to go into detail, the painful and ugly details – and the unbelievable happy ending -- of my story, I realize that ignoring it doesn't make it any less a part of who I am. And I realized that it borders on flat-out obligation to tell your story when you know it could make a difference to others who are suffering, especially in an area where success stories are rare to find. Rest assured, you have found yourself a success story, although this puts it rather mildly. For myself and all who know me, my story is nothing short of miraculous. Don't believe me? At my lowest point my ears were so sensitive, I lived - sequestered - in the basement of my parents house, not even able to open the heavy shutters on the windows because it would let in too much sound, and the only people who could communicate with me were my parents, in whispers. After recovery? I "guest conducted" a full-sized symphony orchestra (that's right, me, surrounded by 80-some musicians playing live instruments!! All at the same time!) Or what about when I was able to attend the movie premiere of the first film I ever scored (yes, I'm a musician) in the theatre, without ear plugs? (this from someone who could not even ENTER movie theatres for over a decade). I think you get the idea. This story is proof positive that no matter what situation you find yourself in, YOU ARE NOT STUCK THERE, and IT CAN CHANGE. Even the situations that have "hopeless" written all over them, don't buy it, not even for one second. For this was one of the critical mistakes I made; resigning myself too early and too easily to a diagnosis that ended up being much worse than the illness itself.
Let's go back to a day in June of 1993. The day of my university graduation to be exact. However, I could not attend the ceremony. Instead, I was holed up in my parent's dark basement, shutters drawn, having my first conversation with someone who had an inkling of the bizarre circumstances in which I found myself. It was a phone conversation, all in whispers. At the other end of the line, I heard a very soft, soothing male voice. This voice was telling me that I was not alone, that he understood the hell I was living, and that there were ways of dealing with this new albatross. Not that he could change my situation, but that he had learned to live with it, and I could too. Who did this soothing voice belong to? To none other than Dan Malcore. What a relief it was to connect with someone who was suffering the way I was, after months of every one looking at me like I was crazy.
Background: Five months earlier, the first day of my last semester at college, was when my world fell apart. It all started with going out with a few friends to celebrate the first day of the semester. We went to see a band. When I entered the brick-walled small club, it was so loud that it immediately caused pain in my ears. But, being young and naïve, with a self-destructive streak, I made the decision to stay in this club, ears hurting, and try to "party" like any self-respecting college student would. Of course I could not have known that this single decision would alter the course of my entire life, in a way so devastating, words cannot capture.
I stayed in the club for two hours. When I went home and went to bed, things felt weird in my head and my ears. I slept with a pillow over my head, trying to escape this odd feeling, yet it just amplified the fact that my ears were buzzing, ringing. When I woke up the next morning, I went to turn on the faucet in the bathroom sink and - I will never forget this moment – the sound of the running water in my tiny bathroom sink HURT to hear. It was like an assault on my senses, and I needed it OFF! Thus began weeks/months of wondering what the heck was going on with my ears. Months of cringing in class when the door would slam, or when the teacher would speak too loudly, or when a car would drive by as I was walking on the street. Ironically, this being my last semester, I had a few extra credits to use up. I used them for the classes that mattered to me the most; music classes. After a few weeks from that initial trauma, my ears did start to feel more normal again. I even felt that the ringing was starting to subside. I ran into one of the friends I was with at the club that first night, and I asked him if he had had any subsequent ear problems following our evening there. He said no, he was fine (comforting!). Then he proceeded to tell me that he was already deaf in one ear anyway, from his days in the army (NOT comforting!).
But very unfortunately, in one of my music classes, aptly called Appreciation of Music, where all you do is listen to music, the teacher jacked up the volume (I sat in my chair, hands to my ears, plugging them whenever he would put a piece on). Inevitably, I was giving my arms a rest (it's really hard on the elbows to plug all the time. Over the course of years, I actually got tendonitis running up both arms from plugging all the time), and on came the music, blasting through the speakers, jolting the living heck out of me. And there we were again, ears buzzing, hurting. Me, assaulted, yet again, and realizing that I was no longer living in the world of the normal. This is when it was time to enlist medical professionals, much to my detriment. We saw various Ear Nose Throat specialists in my home town, and all they could do was tell me how tinnitus is "what nerve damage sounds like", and that once you have tinnitus there is nothing you can do about it, your ears are permanently damaged. The advice that was the most helpful was "just avoid sound"… (please tell me you can detect sarcasm). For those of you not in the know, avoiding sound is about as easy as it is to avoid light, meaning it is IMPOSSIBLE! You cannot see sound, but if you could, it is as pervasive as light energy, and harder to avoid because it is invisible, and it comes at you when you don't expect it. When you are up against something, pray that it is something visible, at least.
Visits to specialists continued, and I was scared to death about my situation. By the way, my hearing was testing fine all this time, which I was of course so very grateful for, but it was betraying my daily experience of things not being fine in my ears, because ALL SOUND WAS HURTING THEM. And when I say this, I am NOT talking about being annoyed or bothered by sounds. I am talking very seriously about EVERY SOUND YOU HEAR CAUSING UNBEARABLE PHYSICAL PAIN IN YOUR EARS. Was I unclear?
So this was my predicament. Needless to say I basically had to drop out of my music classes, and barely got all the credits I needed to graduate. And so here I was, on a day reserved for forward-looking, hope-filled celebrations, and I had just received the equivalent of my death sentence. I had finally figured out what I had, no thanks to any doctors. After picking up a pamphlet at the audiologist's office, I had found the name of my torturer, and it was Hyperacusis. This pamphlet described my daily experience, and so my mother contacted The Hyperacusis Network, and here I was whispering to Dan Malcore. And so it was confirmed, my life had been changed forever. I now belonged to a very small group of people whom no one understood, and who never left their homes. Whose days were spent figuring out how to function in the most quiet way possible. This means eating, cooking, showering; all of the things most of us take for granted everyday. EVERYTHING was at risk of disappearing from my life if it did not fall within my tolerance level (and remember, the decibel level I could tolerate was my parents whispering to me).
Doing what normal people in their twenties do was obviously out of the question; job searching, looking for that all-important entry into the work force, stepping out on your own by moving out for good. None of these prospects were mine anymore. I wanted out. I decided that no one could live this way, that this wasn't a life, and that it was obvious that it was "lights out" for me. After all, living sequestered in a dark basement with ear muffs at the ready, cordoned off from all activities, friends and life, was analogous to living in a coffin, just a slightly larger one. This feeling culminated one evening in me taking a large kitchen knife, and holding it to my chest, mere millimeters away from ending this joke of an existence. (Luckily my mom came downstairs at that moment, and stepped in). Feeling cornered by life, I went outside (it was a summer night). I bent down on the lawn, hugging my legs, and I sobbed. Sobbed like there was no tomorrow, because there wasn't. I sobbed my future away, I sobbed my life away, while my parents stood by and watched, helpless to help me.
Over the next several years, we spanned the country and even the world for specialists, treatments, and anything that would make a difference. I had a few perceived victories here and there, only to realize that they were merely band-aids, short-term fixes that didn't really address the problem. I tried to move on with life the best I could. I tried to find jobs where the noise level was decent (no, libraries are NOT quiet, no place was quiet like I needed it to be). I worked at a credit union for a few months, my ears eventually causing me to leave as the various stampers and printers in the branch became intolerable for me. I actually moved to France (only after ensuring I would have a quiet place to live, and the quietest of cars to drive), because this was where my fiance lived (and yes, the trip in the airplane was as impossible and bad as you can let your brain imagine). I took a few correspondence courses, and even managed a few on site classes at the university (but only after meeting with all the professors before hand to explain the situation). I was wandering, looking for how I could possibly find a place in this noisy world. The prospects didn't look good. Merely getting through each day proved to be an impossible exercise in pain and suffering. Add to that a great deal of tension.
So, my life had been sucked away from me as if in a vacuum, and this doesn't even include the most devastating aspect of all of this. Since the age of three, I had pretty much lived through my ears. I played the piano by ear, composing, picking out songs heard elsewhere, delighting my parents. I grew up listening to and loving music, especially music in the minor key. For those who don't know, the minor key is known as the "sad" key. Music in the minor key has a melancholy, yet beautiful feel to it. This key always resonated deep within me, and it strengthened me to hear music that sounded like what I felt inside. In fact this was one reason piano lessons never worked for me. I just could not bring myself to play the requisite happy little songs prescribed to all piano students. I had a certain kind of music inside of me that needed to come out, and it was radically stifled when I had to play cheerful little ditties. Now you know why my musician's name HAS to be Minor. Minor probably isn't the greatest name from a marketing standpoint, but I don't care. I really can't imagine calling myself anything else, because it is who I am, and who I have been my whole life. That said, I am not a "dire" person by any means, and the music I create, while in the minor key, also has a hopeful, even uplifting element to it. It is an expression not only of sadness, but of hope, and the dichotomy these two emotions represent for us in life, continuously.
Anyway, music had always been my best friend, my fuel, my way of getting through life, my whole life long. Composing and improvising on the piano had always been my solace. And so to have it ripped away from me now, right when I was starting to seriously move towards it, was an incomprehensibly malicious fate, and I resigned myself to the fact that life is cruel, that dreams die, and that God was an idiot.
With each year that passed, I became more and more resigned to this fate. I met an angel (disguised as a human) and we married. He told me that he was going to solve this problem. Yet days and months passed, and turned into years. Life was passing me by, indeed. I couldn't work, couldn't meet people socially, was isolated in my solitary world of a life denied. I needed an outlet, but one with a volume control. So my husband (the angel), came up with the idea to get an electric piano for me, one where I could turn the volume WAY down. It was during my first weeks of having this keyboard that I composed The Dolphin Song, back in 2001. I think that it was this song, when my husband heard it, that convinced him to look into seeing Dr. Jastreboff in Atlanta, and give this thing one more shot. We had previously worked with colleagues of Dr. Jastreboff, but never the man himself. Uplifted by the The Dolphin Song myself, and the possibility it spoke of through its dancing chords (balanced of course with its soothing sadness), I let myself begin to at least think about the prospect of seeing the Dr. (Come to think of it I also started to compose The Rousing during this time, not knowing that it would become "The Rousing", the theme song of my recovery).
And so we made the appointment and the trip down to Atlanta. It was what Dr. Pawel Jastreboff and Dr. Margaret Jastreboff diagnosed and concluded that blew me and every else away. They did their specialized tests that looked at the "health" of the inner ear, and after reviewing the results of those tests, the Dr.s no longer would use the term Hyperacusis to talk about my condition. They replaced it with Phonophobia and/or Misophonia. And when we sat down with the Dr. to get the results, no one could have foreseen the astonishing diagnosis he was going to give me. My hearing tested out normal as usual. This was not a surprise to me, since it always had. But Dr. Jastreboff went even further to say that "master musicians would kill for your hearing", saying explicitly that not only did I NOT have damage to my hearing, but that my ears were in better shape than the majority of people. The conversation became about him telling me that 'there is nothing wrong with your ears, so why do you choose to live the way you do?" This became the theme. It took both of the Dr.s to sit with my husband and I, and talk through this ground-breaking information. Of course I had many questions; about the actual physical pain I felt in my ears, about the ringing, about all of these things that had plagued me for a decade of my life. They gave me some listening exercises to do, and they fitted me with the ear devices that emit white noise in order to start to calm down my highly-sensitized nervous system and physiology.
I cannot tell you the feeling I had leaving there that day. It was literally the first time I had felt even an inkling of hope for so long. However, as you can imagine, I really couldn't believe what Dr. Jasterboff was saying. And so when we got back to real life and I didn't really apply the new information that we had learned, my husband got mad. He got angry. Here I was with a clean bill of hearing health and what did I do? I still lived like I had Hyperacusis. Because, in my mind's reality, and in my brain's neural pathways (by this time), I DID. I did my therapies, which really did start to improve my tolerance, yet I still was living in the world of disbelief. I didn't REALLY believe what the world's foremost expert in this field was telling me.
All it took to plunge me all the way back down – and ultimately up -- was 'an episode', you all know them well. It is when something happens that is out of your control and you are exposed to noise that you are SURE is loud enough to cause real damage (not to other peoples' ears, but to yours, because yours are "different"). And this episode was too much for me to handle. My brain found its familiar way of thinking, and off it went. "No, this time is for sure, this time I KNOW I damaged my ears. I can feel it. There is no way they aren't damaged after that!" (I had gone on a boat ride and the motor was very loud.) And it was at this point that my husband threw his hands up in the air and said to me "I can't help you with this anymore. You have all the information you need, and still, you go back to your old ways of thinking." (He actually escorted me back to Atlanta to see Dr. Jastreboff for an "emergency" appointment, and Dr. Jastreboff ran his tests, etc and assured me that my ears were *still* fine). Of course I was EXTREMELY defensive at this time, yet I had never seen this angel of a man (my husband) so frustrated, and quite honestly it was the fact that this laid-back, gentle individual was seething at me that made me even consider to start to REALLY take a look at myself, and how I might be contributing to my hearing issues. It really takes a lot to look beyond your standard defenses. They come up without you even realizing it. But I was a highly motivated person at this point because the man who had saved my life was about to abandon me. It was only when I was ready to question a few of my "assumptions" that I started to see how *invested* I had become in having this problem.
At this point I had to really start to examine myself, defenses down, and what was making me continue to live in a world of isolation that I no longer had to. It is amazing what you will find out about yourself if you can just let yourself examine things without needing to defend your ways. I found I had become majorly invested in being the victim. And having Hyperacusis actually became very convenient, because it saved me from having to do a lot of the things that normal people have to do. All of the messiness of living life is avoided if you don't participate in it at all. Let's face it. Life is difficult to navigate all around, and it sure is convenient when you don't have to navigate it because you "can't". When you don't participate in life, you have a good excuse for a laundry list of offenses. You don't have to take responsibility for anything because after all, you have this ear problem that dictates any decision-making process. So first I had to have the humility to look at myself and see how it was serving me to hold on to this problem when I have just been told by the world's foremost expert that there is no measurable physical manifestation of it. Certainly it must be serving a purpose if I am so reluctant to let go of it. When you live with Hyperacusis, there are a ton of things you can't do. There are also a ton of things you don't have to do.
But let me clarify, you cannot just "decide" to stop having Hyperacusis. It is a physical condition that reinforces itself in a negative way, and in a physical way, and it worsens unless and until someone steps in somehow to break the cycle. I found in my case, it started for one reason, and worsened for the usual reasons, but then I found that there were also other, unconscious, underlying reasons for me not being able to get better. Dr. Jastreboff was finally able to give me what I had been desperately searching for for years; the tools, and the permission, to get better, and here I was, unable to do it.
Dr. Jastreboff spoke about my thought processes as the thing to address rather than anything further with my ears (except it was still paramount that I do the retraining ear devices and exercises). He suggested to my husband that there might be another process at work here, a process that involved focusing on something, to the point of becoming obsessed with it. Sound damaging your ears, for example. And did you know that when you are constantly thinking about something, it becomes your reality? This is not new age psycho-babble, it is how humans operate at a very basic level.
And so once my physical self was cleared of any pathology, there was only one place to turn to; my brain. I will try to summarize as best as I possibly can the confusing intermingling of physical and mental, an intertwining so seamless between the two that they were impossible to separate, resulting in over a decade of my life being lost to isolation, pain, and fear of sound. I know that this whole saga started with something real, tangible, and physical in my ears, due to an assault to the ears, an acoustic shock injury. The usual pattern of Hyperacusis no doubt had been set in motion. And then I believe that, because of fear, my mind took over where my body left off, meaning whatever physical process had been taking place, that once I had the fear of damaging my hearing implanted in my brain, that it was this fear that took over and ran both the mental and physical processes that led to my physiology becoming even more sensitive than it had originally started out in the beginning. Because if you avoid all sound, you do become hypersensitive to it, just as if you were to avoid light for days and then all of a sudden you walked into a sunlit room. Try avoiding sound for years and then immerse yourself in it and see how it feels. Totally overwhelming. In fact, while I was living at home with my parents for the first few years of this, because we had to keep the house so quiet, and my parents lovingly obliged, their sound tolerance went down as well, and their perception of what was "loud" totally changed. Their ears became more sensitive. Almost as if they got Hyperacusis by proxy or something. This not only shows the power of suggestion, but also the impact that your environment has on your thoughts and behavior.
To be clear, I am NOT (!) saying that this is all in your head, by any stretch of the imagination. I know the problem is real, the symptoms are certainly real. What I am saying is that just because your ears feel more sensitive than they used to or than the average person's, this does not necessarily mean they are more susceptible to damage. This is where a lot of us get really tripped up, and we fail to make the distinction, because we are so scared of causing "more" damage. One thing I AM saying is that how your mind is perceiving a situation actually will determine its outcome. It's like a physical process was started, nerves and neurons responded, grooves were laid down in the brain. Being a musician, my biggest fear would be for something to happen to my hearing. Ever heard the saying "you create what you fear"? I would say that this is a disturbingly perfect example of this.
The real diagnosis that came out of me seeing Dr. Jastreboff was a new awareness that thoughts that get stuck in repetitive grooves can start to dominate your experience. I then went to Dr Eda Gorbis in LA who treats precisely this problem of thoughts that get "stuck" in your head. Another way to describe this kind of thought process is a term you have probably heard; OCD -- obsessive-compulsive disorder. It was a combination of treating years of negatively reacting physically to sound, with treating the OCD that led to my recovery. It was a two-pronged approach. Am I saying that anybody with collapsed tolerance to sound has OCD? NO! I am merely saying not to be too quick to dismiss the role that one's thought's, fears, and temperament play in how far this condition (or any condition) will go. One reason Hyperacusis went far with me was because of my disposition, I do believe.
Just to prove to you how far I have come; you know by now that I am a musician, (now) actively pursuing my career in the music world. This is something I could NEVER have imagined I would be doing back in the throws of my Hyperacusis days. You also know a few of the highlights of my recovery thus far (there are actually even more!) Here are some other examples of things I have done in the past few years, in addition to just being able to get through a day without major suffering, since my recovery. I have been around screaming babies for hours at a time, working as a nanny (it's a good day job for us creative people). I've taken a course in Audio Production where it is all about LOTS of listening through speakers and even headphones. I've been in lots of recording studios around Seattle where music is playing very loudly, been around live music as I immerse myself in the world of musicians, been front row at a large concert. Of course I am careful to protect my hearing with earplugs when needed, as a normal person would. I myself cannot believe I am able to do these things. Honestly. But things didn't just turn around on their own. It was that I had the fortitude, and yes, it takes fortitude, to look inside my own mind and dig, I mean REALLY dig to analyze my own thought processes, in addition to doing the exercises set forth by Dr. Jastreboff. It is not an easy thing to do, but the rewards of IMPARTIAL self-introspection are immense, in any situation.
Again, because this situation is so intertwined, between body and brain, I will try to make a list of the key concepts that were crucial for my recovery:
DISCLAIMER: I am NOT saying that these issues are necessarily part of your Hyperacusis/hearing situation, just that they were part of my situation, and it was only when I addressed these that recovery came to me.
1. I had to realize that I had become INVESTED in my identity as a victim (of circumstances, sound), and that living in the victim-identity was actually serving a purpose for me. (For me the purpose was that it meant I didn't have to take responsibility for my own life, because I "couldn't". It also meant I didn't have to take risks. It was a safe way to live. A very painful way to live, but there was a security to it.
2. I had to realize the peculiarities of my brain and how it works. That it grabs hold of an idea and won't let it go, and that there are consequences for this kind of solitary, OBSESSIVE thinking. That when you think about something for an extended period of time, it becomes part of your reality. (No, this isn't The Secret Revisited, it is a sobering example of how the spiritual and physical worlds interact, even when you don't recognize it).
3. I had to realize that the saying "YOU CREATE WHAT YOU FEAR" is not just hokus pokus. It really is true, and I believe my situation is an alarming example of this, and the devastating real world consequences overly "fearing something" can have.
4. That you don't have to wait for everything to be perfect to start pursuing what matters to you and living the life you want. For example, I still have tinnitus. Is it louder/more disruptive than the average person's? I have no idea. Sometimes it starts to get to me, but to be honest, I can't even remember how it compares to before the whole ear thing, meaning I could have very well had it "before" and just didn't notice because no one was telling me how terrible it was. It depends on how much I focus on it. If I perceive it as a THREAT, like I used to, then it becomes much bigger than it actually is. When I went to Dr. Jastreboff, they asked me which bothered me more, the sound sensitivity or the tinnitus, and for me it wasn't even a question, it was the sound sensitivity that had made my life a living hell. The problem comes when every time you hear the ringing in your ears, you tell yourself that your hearing is damaged, and that your ears are damaged, and that any sound will make it worse. Your PERCEPTION of tinnitus will render it either an innocuous "sound of life" (because total silence doesn't even exist in life, ever) OR make it your worst enemy, and every minute you hear it, unbearable.
5. I had to accept that I will never have all the answers I want and need, relating to everything, and that you have to LEARN TO LIVE WITH UNCERTAINTY and circumstances that aren't neatly packaged and wrapped up. Life is messy. Just accept it and start living it. An example of how this applies is how with this condition, we develop a need to control the environment. Yes, this is a real need for our physical comfort. And yes, it can also turn into a way to exert control over the "messiness" of life.
These concepts are what made recovery possible for me. Here is the kicker: had I not addressed these intangible issues, and had only done the physically desensitizing ear retraining, I would NOT have recovered. I had to realize that I had become invested in this, and that it was protecting me in a weird way from having to do things I was too scared to do, for example, pursuing a music career, which is quite a scary proposition, ear problem or not!
If I had to state the number one lesson I learned from my whole experience down to the depths of hell and then back up, it would be this:
Your perception of a situation will dictate its outcome. You might want to read that again to make sure it sinks in, for that insight did not come cheaply.
When I first was having pain in my ears after the loud concert, someone who was very well meaning showed me an article "Two Hours Can Damage Your Hearing Forever". I remember that just in reading that title, I felt viscerally a fear clamp down on me that I, in fact, had ruined my hearing forever (because I had stayed in that club for two hours). It almost was as if just the title of that article sealed the deal for me. And then Dr.s told me I just had to avoid sound, and that if you have tinnitus it means your ears are damaged. Add to all this the fact that this is what has the highest stakes for me, the thing I would be the most scared of losing, my healthy ears because of the importance of music in my life, and you pretty much had a Molotov cocktail mixed and served, ready to blow. My perception quickly became that my life was over, I would never be able to live normally again nor do what was most important to me, and that I had to avoid all sound to preserve anything I still could of my ears... and this is exactly what my situation became.
I feel that with me, there were mental tendencies, or ways of thinking, that were already in place when I first traumatized my ears, making me more vulnerable to a downward spiral type of outcome rather than an outcome of, yes, I was in a place that was too loud and it hurt my ears, but my hearing is totally intact and over time, they will recover if given a chance, and maybe with a little help.
Again, because each situation is so different, I dare not say that these same issues are at work beneath other people's Hyperacusis. What I would recommend though, is that you at least ask yourself if any of these concepts MAY apply to you, even in the slightest way (like say 1% of your total Hyperacusis equation). For me they played a LARGE percentage in my equation. This said, after years of thinking/living/reacting in this way to sound, my physiology adapted to it (like physiologies always will), and my sympathetic nervous system became highly sensitized to sound, out of necessity. Because if I have convinced my brain that sound is a threat to me, my brain will ensure my body reacts to sound in a way that protects itself; i.e. tensing up, using drastic measures to avoid sound. Add to this the neural pathways that are laid down, the grooves that become deeper and deeper in the brain with each passing day of phonophobic behavior, and of course, after ten years of this, it also took the ear retraining devices prescribed by Dr. Jasterboff to address the physiology that had developed and deepened. This is partly why my recovery took time. It actually took place over a couple years, because as you can imagine, it is hard to undo patterns that are so deeply embedded in your psyche as well as your physiology. After all, my whole adult life had been spent living this way. And now, it is like I am living as a normal adult for the first time in so many ways. I am functioning better on every level than I ever have. I am finally making the music that God put inside of me. This first album was such a long time coming, and I went through SO MUCH to get to the point of making it. Now you understand a lot better why it is so fitting my debut album is entitled "The Rousing", and for those who search out the meaning behind this album, they will better appreciate how I paid in tears, sweat and blood to create this music. Maybe they will even regard it as proof of the miraculous (which it certainly is for me), or at the very least, a potent token of hope. (The music label I created is called Hopespell Music, accordingly).
It is my wish that me writing out this story will be of help to someone, somewhere, who thinks -- no, who is sure -- that their life is over. DON'T LOSE HOPE! Whether your situation resembles mine, or not at all, the bottom line is that the brain has a lot more "play" than you realize. It is hard because it is totally unconscious. I myself can't believe this story, and it was me who lived it. Yes, there is "black and white" in life, but your brain has play on EVERYTHING, even the things in the black and white categories. So go ahead and "play" with them. I bet you'll be amazed at what you'll find. For I was once drowning in the water, and now I have made it to the lifeboat. I am here to pull you on, too. I have extended my hand to you, it is now you who must grasp hold.
This is Dan's Story
The University of Wisconsin/Green Bay was holding their boys basketball games in our local arena. The P.A. (public address) system for the entire arena was being broadcast through two Bose speakers. One of those speakers, to my left, was only 50 feet from our seats. My wife and I felt it was way too loud. I brought it to the attention of the arena but to no avail. I actually felt my left ear was experiencing some hearing loss. I remember mentioning to my wife that I should get a hearing test. This was strike one.
While growing up, my parents never traveled. A goal my wife and I had as young parents was to give our children the gift of travel and teach them to feel comfortable in different lands, different cultures, different people. October of 1991 we were in Toronto, Canada (a lovely city). We always enjoyed looking for unique, reasonably priced family restaurants. My children never experienced a sing-a-long restaurant. Toronto had one and we decided to give it a try. We were seated next to some tower speakers and the music coming from the organ was so loud we felt it would be impossible to carry on a conversation so we requested different seating. The waitress obliged. After an intermission from the music, the organist started the next song and little did I realize but the entire chime board for the organ was mounted directly above our table. When the chimes starting going off I excused myself from the table and walked outside. This was strike number two.
We flew back to Green Bay and went out with a couple to a movie later that week. The previews for upcoming movies seemed loud but suddenly something happened to my ears. I suddenly noticed that the sound was extraordinarily loud in my left ear. In fact, I put my finger in my left ear, then in my right ear, and it was clear that the sound coming in my left ear was at least three times louder than the sound coming in my right ear. After the movie we went with the couple to a sports bar. Ironically our local college basketball team was playing a game that was broadcast on TV. Every time our team scored the fans around the bar would clap and cheer. I felt like jumping out of my skin. I had no idea what was going on. This was strike three.
I went to my doctor and he suggested my problems were temporary and suggested the probable cause was the change in pressure from the flight back home. My condition continued to deteriorate. Even my voice was too difficult for me to handle. I first became hoarse and then I seemed to develop a case of severe laryngitis. In retrospect I was trying to alter to tone of my voice so my ears could tolerate it causing me to ultimately loose my voice almost completely. Two months later I traveled 6 hours (by car) to Mayo Clinic in Rochester, Minnesota wearing earmuffs because I could not tolerate the sound of road noise. I remember telling my wife that if they had to make my deaf, it would be better than not being able to be near my family and enduring the normal sounds of raising 5 children and running my own business. I was so sound sensitive at Mayo Clinic that I could not tolerate the PA system. I asked the nurses if they could put me in a room until my name was called. They would not allow this. I remember before I went to Mayo they asked me if I had any disabilities they could accommodate upon my arrival and now, here I am, begging for a quiet room till my name was called off on the PA system and they would not oblige. I was a mess. I was now subjected to an MRI and brainstem evoke test, both at high decibels – this was strike four. No one ever tested my Loudness Discomfort Levels before these tests were given to me. Near the end of my session at Mayo Clinic a nurse sat me down in a chair and took out a pocket watch. She said "I am going to step back and slowly move this watch away from your ear. When you can no longer hear the ticking of this watch – tell me." She took one (giant) step back and said, "Surely you can no longer hear this watch." She slowly proceeded, one step at a time, until she was at the end of the room. I told her I could still hear it. She was in disbelief. It is for that reason that I believe when your ears are first burned by hyperacusis they are much like your skin that has been severely burned. This is what I mean. When you sustain a significant burn, your skin can barely stand the feeling of wind across your skin. Your skin is hyper-sensitive until it starts to heal. I think that when your ears come down with sudden severe hyperacusis, some may develop hyper-sensitive hearing and be able to produce an audiogram at minus decibel levels. I proved it by producing such an audiogram with my local audiologist. I think this ability is short lived but it is a phenomenon that is rarely ever talked about. My exit from Mayo was with this prescription by the doctor: "I am going to prescribe Ativan to calm down your ears and I do not want you to wear any ear protection on your trip back to Green Bay." My ride back to Green Bay was in the middle of a snowstorm. It took me 7 hours to get home. Without ear protection I arrived home in a heap. When I walked in the kitchen at midnight the refrigerator sounded like a loud bathroom exhaust fan. I went to bed and my legs could not stop vibrating. It was like my whole body was wired from sound exposure. In fact, even the sound of taking my clothes off or turning my head on my pillow at night was too loud. At this point I could no longer see how I could hold a job or be near my family. I saw no future for my life and prayed with all my might to God. During times of pain in my life I have always felt closest to God. This is what works for me.
My wife Mary would not accept the futility of this. I remember her saying, "If they can help people who are hard of hearing, why can't they help people who hear everything too loud? Why don't you write to anyone you can find who has a problem like this?" Over the following three months I contacted the American Tinnitus Association and they gave me the names and addresses of 75 people who had a condition called hyperacusis. To this day I will be forever grateful to the ATA for giving me this information. I wrote to every one of them. This was the birth of The Hyperacusis Network.
I did not wear earplugs on a daily basis. I felt in my heart that there was no way that my auditory system could withstand this any longer. At this point I would have welcomed deafness. At the end of my work day my ears felt like raw acid was being poured down them. When I got home I went right to my bedroom and collapsed in exhaustion. I could not stand the sound of my children's voices. I could not listen to TV because now I heard an extremely high frequency pitch which I never heard before. I could not talk on the telephone and it felt like someone was pushing their finger on my eardrum creating such a feeling of pressure I thought they would explode. Those were difficult days and I am not ashamed to admit that privately I shed many tears.
One night on the TV show 20/20 they had a segment about autistic children and Auditory Integration Therapy. I went to Cincinnati for this therapy because AIT improved their tolerance to sound. When I was there they gave me a hearing test to identify my most troublesome frequencies (which was almost everything). Then you listen to two 30 minute sessions of music with those troublesome frequencies removed. The problem is the music coming through the headphones often exceeds 85 decibels. Although I didn't think my ears could get worse, they did. Now I thought I would loose everything. Shortly after that I received a call from Montel Williams asking me to fly to New York and appear on his show. He offered to pay all of my expenses but I told him I was in no condition to make the trip.
Months later I received a letter from Bill Altmann explaining a therapy that was being administered by the University of Baltimore under the direction of Dr. Pawel Jastreboff and Dr. Jonathan Hazell. I was in no condition to travel by this time but made an appointment with these doctors hoping my condition would recover enough so I could make the trip. A good network friend – Dan Segal went to Baltimore to learn about this therapy. When he got back he told me everything. I went to my local audiologist and told him to order these sound generators for me. He had no idea what I was doing but was respectful enough to acknowledge that he was working for me and would help me. I started this treatment on my own. Susan Gold from the University of Baltimore called me to tell me they had an opening and would like to see me. I told Susan that I was doing the treatment on my own and would prefer not to travel. She encouraged me to come and said Dr. Jastreboff and Dr. Hazell would like to meet me since I started the network. I reluctantly agreed. I found all three to be very nice and professional. Dr. Hazell seemed to feel that individuals who have hyperacusis have a pre-existing condition of anxiety. I told him that anxiety doesn't produce hyperacusis, but hyperacusis produces anxiety. I suspect the same is true with people who have other rare diseases that have no cure. Dr. Jastreboff and Susan Gold were excellent. They were very kind and compassionate and explained their theories on hyperacusis. The believed in their retraining therapy and I was able to hear their directives in person. The tested they did on my ears was done at tolerable levels. The said the testing is important so they can have objective data to track my progress. Their counseling was done compassionately and I felt I was in the best hands I have ever been in up to this point.
When I got home I tried to fulfill the protocol at that time of wearing the sound generators for at least 2 hours a day and try to build up to at least 6 hours a day. During those early days of retraining I had some mild setbacks. I remember Susan telling me that ours ears should remain active and that unexpected everyday surprise sounds that come with normal living should not be viewed as a negative. I believe that is good advice. The retraining therapy is performed so conservatively that it is designed not to exacerbate our hyperacusis or tinnitus. While it is ever so slowly building tolerance, our ears are also able to handle surprise sounds. These surprise sounds are certainly distressing to us and worrisome but they help us and increasingly make our ears stronger. However it is clear to me that anyone doing retraining should use ear protection when they are going to a loud event or dealing with large family gatherings.
After six months I felt I was going nowhere. I thought seriously about giving up this so called retraining therapy. After all, what kind of rehab shows no results after six months? I never called Susan Gold back for follow-up counseling but in retrospect I think that is crucial because so many people bail out of retraining. I kept telling myself that I made a commitment to see this thing through and besides, nothing else up to this point has worked. I have always been a self-motivated person and refused to quit even though everything in my gut told me to bail out.
At the six and a half month mark I noticed something ever so subtle. I have this darn Pepsi vending machine at my business and the motor emits a high frequency that is so unpleasant that I can't wait to get past it. For the first time I realized that the Pepsi machine was less bothersome. It was such a subtle thing but it was big to me because I felt I was finally seeing some progress. To me, that was a major turning point. I felt like I might be getting my life back.
To fast forward, I completed 18 months of retraining. Since that time I have worked at building my tolerance to sound in other ways. For example, if I am in a large gathering and I start to feel pressure (fullness) in my ears I do not put ear protection in place. After a period of time the feeling of fullness increases in my ears to the point were I eventually put a half of foam ear plug in my ear. As time has gone by I have built my tolerance to sound by doing this and it has worked. In fact, two years ago (2002) I was two feet away from an incinerator when an aerosol can exploded. It blew open the incinerator door and spewed flaming debris on everything in the room (including me). I worried about the sound and how my ears would handle this. It is amazing how retraining toughens up your ears. I had no setback. At this point in my life I do not carry around earplugs in my pockets unless I am going to an event which I know will be loud (like a movie theater). In emergency situations I have five different size earplugs – called fingers which I can quickly stick in my ears.
I think the retraining is the best thing we have right now. It is a therapy that is safe and effective. Because it is so conservative, it takes a long time to come back. In some rare cases, retraining brings a patient back nearly 100%. The network found that 91% of patients who completed retraining the average improvement was from 15-75%. For that reason alone I would never say retraining provides a complete recovery for everyone. However, it gave me my life back and I am grateful for that. I hope this is a story of hope for those who are going through the struggle of hyperacusis. When you get hyperacusis you have to be pro-active and not let this thing beat you, because it can if you let it. I believe it is pointless to put your faith in all kinds of other things like gingko biloba, chiropractic, and homeopathic treatments when we have something here that clearly will give you your life back. I think anything else at this point is a waste of valuable time and money. This therapy is so kind and gentle on the ears and deals with the problem head on. I believe there are two dimensions to hyperacusis. One, I think there is something that is physically wrong with our ears. Two, I think the way our brain processes sound has also been affected. The second part can be re-processed and our brain can be retrained to build our tolerance to sound. In time, I believe we will find the secret to the entire problem but this is the best we have for now. Go for it and get on with your life!
This is Lynn's Story
Late April 2002 I came down with a ring in my left ear that eventually went to both ears. That progressed to chimes, machine like sounds, shrills, and steam. I saw an ENT who said come back in 6 months if you are not better.
My medical provider said Eustachian Tubes were the problem so she gave me medicine and inhalents and an ear cleaning solution that made my ears pop loud like a blow light bulb going off a few hours after being home.
The medicine and inhalents did not work and made my ears scream like crickets. I stopped using them and the crickets calmed down. I started taking Trazadone so I could sleep at night while I waited this thing out.
I started using wax earplugs because of my daughter's daily yelling. She is severely autistic and I was around her a lot back then. I was afraid my tinnitus would get worse. I got the most terrible pain and infection feeling in my ears late that summer so I took a Cephalexin antibiotic and was using a window fan which made me sick.
My ears started there thudding out loud. It did not cure my ear symptoms so I took a different antibiotic. I had an MRI, (a hearing test) that said I heard well but my stapedial reflux had no response. By January of 2003 I was starting to get hearing sensitivity and could no longer take my daughters off the bus.
I phoned the American Tinnitus Association because I believed I had the worst tinnitus ever. I did not know what to do. They mentioned The Hyperacusis Network and suggested I their pink noise tape from the Oregon Hearing Research Center.
I did not know what hyperacusis was but scheduled lots of ENT, hearing tests, and had an ear plug mold made. I also saw an acupuncturist who used acupressure to get help. That month was just too much and too loud for me and I collapsed into the worst hyperacusis ever. I sought relief by going to my quiet bedroom. I still had two young children to take care of at that time and had to depend on my husband whenever I could.
I got my pink noise tape in the mail around that time. I had the echoing, vibration, rumbling, tensor spasm, distortion, burning ear, fluid, and feeling of fullness. Voices had to be held down to a whisper I could not even handle my own voice. Dish's, silverware, metal clicks, flushing, water running, fan's, the sound of paper moving or turning, voices, everything bothered me and hurt to hear.
My tinnitus and hyperacusis was reacting to the sounds of water and playing the sounds back to me including my fireplace blower and the pink noise tape. It was terrible.
Everything was too loud and caused me pain with strange reactions inside my ears. I found an acupuncturist and chiropractor close to where I lived. I went everywhere with wax earplugs and muffs and eventually bought a Bose noise cancellation headset. I finally connected to The Hyperacusis Network in July 1st 2003 and found myself busy reading all their information.
I had four hearing tests by then and was hearing in the -5 to -10 range. I learned things about hyperacusis that no one else, including my doctors had ever told me. I was using the pink noise tape everyday and with my alternative provider's help I was a little better. I was starting to take out the earplugs more to sound.
From the information from others I got on this board I started doing music therapy by turning on my favorite cable station. At the time I could not turn it on at all and was accusing others of messing with the volume as the volume kept changing and getting louder. It was my brain doing the adjusting but I didn't know it.
But I worked on this the summer of 2003 and by September I could sing out loud again and talk out loud again. I did this even after I was better but I also started using a sound machine around that time by the side of my bed. It helped de-sensitize me to the sounds in the morning.
By November 2003 I phoned Dr. Jack Vernon. I asked him about whether I should try going to my folks for Christmas. My tinnitus was bad and I wasn't doing good. He said I should go. He suggested I don't wear earplugs in the car or at my folks. If it get's too loud leave the room or use your fingers. I said I can't do it as I still use earplugs in the car. After talking with him a few times I did go. I came home with disco tinnitus but it cleared up the next day. I listened to people talking without using earplugs every day. The voices of my twin autistic girls was horrible as there voices were loud and assaulted my ears. It felt like I was being kicked in my eardrums but I stuck it out and the voices came down.
It took a couple of weeks of this practice exposure and the loudness started to drop. By Februayr of 2004 my ear spasms to sound were totally gone and voices sounded normal again. Dr Vernon was right.
Now I can take showers again and use the Jacuzzi with jets on. My hyperacusis and tinnitus would once react to those sounds but not anymore. Now I can even sit by the fireplace blower.
"My retraining" from came from using my molded earplugs (with no holes in them) was my way of improving my ears without plugging up my ears from sound. Now I can even water my front and back yard. I only push in my earplugs if I hear a loud airplane or other loud sounds.
They were my security blanket to help me retrain and not shut out all sound. I could keep them loosely in my ears so they were handy to have. This was hard to do but worked for me and now my loudness disorder I would say is probably gone as nothing sounds hyperacusis loud to me anymore.
My pink noise tape has been used in the kitchen, frontroom, yard, where ever I am in the house with the sounds of normal chores . I got used to the pink noise tape playing and incorporated it into my life as I did the sounds around me.
My symptoms are about all gone except the muscle thumping jumping problem I have mostly in my left ear. I would say I'm about 90 percent better and my only problem right now with sounds is some discomfort (not pain) felt with high frequencies at loud volume.
I know my tolerance and limitations at this time and they are pretty good. I do use muffs when using my vacuum cleaner which is loud.
But this is so much better than I was before. And I'm surprised I got better with how bad I was at one time. White noise contains frequenies between 20 to 20,000 Hz. Pink noise contains frequency's between 200 to 6,000 Hz.
The Hyperacusis Network Pink sound CD is pure pink noise. I ordered it in October 2003 but I was accustomed to using the Pink Noise tape from Oregon (Moses/Lang CD).
I gave up my Trazadone about a year or more ago and used Magnesium and Vitamin B alot with my exposures to sound on retraining myself to sound. Magnesium depletes from your ear with loud noise. Hope this helps.
This is Heidi's story
I was 15 years old. The august sun shone brightly through the large picture windows into the living room where I was playing the piano. Some of my brothers and sisters, about four of them, were noisily playing a game in there, also. My music just added to the noise and general confusion.
On of them wandered over and leaned against the piano while watching the others play, then suddenly shouted something to them-right in my ear! "Ow! Be quiet!" I said irritably, pulling away, and continued my sonata. The others kept playing, and, for a brief moment, all seemed okay.
The piano, in fact, the whole room, seemed as though someone had taken hold of the volume button and was steadily turning it up. I quit playing; the piano was too loud-hurting my ears. 'Strange…' I thought, furrowing my brow. 'Oh well.' I picked up my guitar-it would be quieter. A few strums and it hurt my ears, too! 'What's going on here?' The volume kept growing louder, and louder, and LOUDER! – I fled from the room. Up the stairs, through the hall and up to the attic I ran like someone was chasing me. Anywhere-just to get away from the ever-growing monster of noise. I ran around the chimney to the other side of the attic and to my desk, it was the one place in the house farthest from the noise.
I sank into my pink office chair, set my hands on the desk and gazed ahead through the octagon window. It faced west; I looked out at the fields. The corn had started to turn brown, getting ready for harvest next month. I looked up at the blue sky with the white, airy clouds floating slowly across it's face-silently.
I wondered. 'What is going on? This is so strange, what's happening?' I felt I was in a blur-like a very accelerated Ferris wheel. Even the silence hurt. My head was throbbing. I tried to whisper, but it was unearthly loud and my ears screeched with pain-so I stopped. I looked out the window again. 'Dear God, what's happening?'
I then talked with the only One who knew what was going on. I knew He loved me, He was in control, and that I could trust Him. He'd "never leave me nor forsake me". This assurance was one of the two key things that led to my recovery. I had been praying about my future, and I knew that somehow this was in God's plan-but I wished I knew what this was! I was scared by the pain, the strangeness, the not-knowing. But I was not overwhelmed with these scared feelings-I didn't feel like I was going crazy. There was a peace that I had not known before like this-an uncanny, different peace that could be there in the middle of confusion, like an oasis in the storm. Even though this-whatever it was-had happened to me, inside I felt the "peace that passes understanding" that Jesus promised those who believe in Him.
One of my brothers came up to the attic. "Mom wants you, Heidi," he said, and ran back downstairs as I tried to figure out what to say-without speaking! I faced a dilemma, I couldn't venture to the noisy downstairs to Mom, and I couldn't communicate to her why I couldn't go downstairs. She came up after me a little while later, displeased with my disobedience.
Imagine endeavoring to talk, but every word that you say piercing your own ears, to your Mother, who is not happy, and then trying to tell her, with respect, that you can't stand the sound of her voice. Not easy.
My mother finally realized something was wrong with me, and tried to understand, too, what had happened to me. It was hard for her to totally believe me, it seemed so unreal. She must have been slightly skeptical. After all, having an imagined sudden attack of earache could have been to my advantage. But I also was truthful, so , it was hard to know what to think.
I guess she and Dad decided to believe me, because everyone in the household was kept down to a whisper. One of them brought my supper up on a metal tray to me-still in the attic. As she walked across the dark green carpet, a piece of silverware clanged against the tray. I recoiled in pain.
I slept in the attic, ate in the attic, lived in the attic. And everyone else tried to be quiet, which was extremely hard for a family of eight. It was easy to forget since they were used to being loud.
The next day Mom took me to our general physician. She thought I had an ear infection and gave me a prescription. I steadily got better over the next two weeks, but the day after the prescription ran out, my ears became almost as sensitive as before. I got a refill, but it didn't help at all.
We went to a specialist, he said I had TMJ. We went to an orthodontist. The orthodontist said TMJ wouldn't affect me ears that way. We went back to the specialist, and his assistant fitted me with custom-made, $80 pink/white/purple earplugs. We contacted the Mayo clinic. The only suggestion they had was for me to do my schoolwork in a separate room, away from the rest of my home educated family.
That was a blow. To think that the experts' only advice was just to try to cope with the constant pain discouraged me. 'When am I going to get over this thing?' I thought. "Will it be for the rest of my life?' That would be almost unbearable. I just tried not to think about it.
It was hard, though. I was constantly improving in how much sound I could tolerate, and then I would have a relapse. I would start over, trying to coax my ears to accept more and more noise, till I would be exposed to a loud sound-and fall back again. It would happen every week, sometimes every day, in differing degrees. My mom said, "When Heidi would hear a loud sound, I could estimate it would send her back, say, two weeks until she would be able to tolerate what she could before. And it would be."
It was difficult for my family to be able to judge how much sound I could take; each day it was changed! Yesterday I would be able to stand the ting of a fork against a plate, today I covered my ears and cried. It was hard for them to believe I wasn't faking it. They still didn't understand what I was feeling. That was the hardest part of the whole ordeal.
There were only a couple things that helped soothe my ears. One was wearing my multi-colored earplugs almost all day. By doing that, I soon was able to do some of my schoolwork in the same room as the others.
The other thing that helped was doing outside. I felt more cheerful then, except when the crickets were too loud. Just taking a walk in the cool fresh air helped me "walk out" my frustration and enjoy the beauty of the nature God had created. I could softly talk, or some days only whisper, as I talked to Him. I was realizing more-and-more H was my best friend, especially when all my other friends stopped writing.
As the months went by, life was slowly getting easier-I was slowly increasing my tolerance. In January, I went with my family to a wedding in Nebraska. When my grandpa went to the hospital in Des Moines a couple weeks later, I could go and be with him, too. At home, I was actually eating with the rest of the family (Yea!), and they were learning to not hit forks against plates.
Then I relapsed. In April, an ear infection came with my cold, and it was back to square one. Oh, that was so hard to accept. I thought I was almost done! And now I had to start over? Eight months of struggling-almost well-and then it was like my goad was snatched away. And if I got back to where I was before, then what? Would this be the way the rest of my life? Struggle, plain, tears, then relapse. I was back to the attic.
Now as I look back, I see everything in a different light. I'm glad I didn't know the future back then; it was such a growing time for me.
A month after my relapse, through a dear friend, I found my condition was called hyperacusis and there were a whole lot of other people who had it, too. She found The Hyperacusis Network on the Internet, and we read all the information from it. Finally, my family started to realize what I was going through, instead of just having to take my word for it. They, especially Mom, helped me by finding a good hyperacusis doctor, staying quiet, padding the table, using paper and plastic plates, and just making the house more sound-absorbent.
I found there was hope for my recovery, too, though it sounded like a slim possibility to me. I tried the TRT with the little sound generators in my ears. After about a month I returned them to the doctor; having something in my ears, and the noise they made irritated me. We thought that the negative response they invoked counteracted the purpose. I've never enjoyed radio stateJ My mother called every specialist in the U.S. to find help. One, Jill Meltzer in Highland Park, Illinois, suggested listening to a sound spa, so Mom went shopping at Target and Walmart. She found one that I set by my bed and desk, and a tiny one I could put in my pocket. I would hook headphones to the small one and wear them around my neck so I could listen to the 'waterfall' all the time. It was a soothing sound that didn't make my ears upset, and since I had control of how loud it would be, I wasn't scared of it.
By listening to that white noise 24/7 on my sound spas, slowly over the months turning the volume up, and weaning myself off ear plugs, unless there was a very loud noise, I recovered. I made a couple of visits to a doctor trained in hyperacusis therapy, Dr. Diane Duddy at Washington University in St. Louis Missouri. I improved-so rapidly that she was amazed. It was a miracle.
It's four years since I got hyperacusis. I now am able to tolerate almost any noise. I can wash dishes, vacuum, play the piano to my heart's contest, and yell for my team. I don't drive the tractor yet, though. I can attend college, and I have a fairly quiet job as a graphic designer. I was able to go to Bible camp this year and be in the same dining hall with 75 little kids plus the other staff; I only had to go out when they banged on the tables, or during the singing.
I could hardly believe it when I found recovery was possible. But it came to be. I had it really bad for only 18 months, though it seemed like forever at the time. While going though it was not fun, I can truly say that I am very thankful for the experience. And I am very glad to be recovered. Praise God.
This is Ville's Story
I have spent the last three years of my life practically just trying to avoid noise all the time. I also had to keep my ears plugged all the time. I guess I didn't take them out for more than 1 minute in 3 years. My hyperacusis got so bad that I didn't seem to have anything else in my life, just anxiety, insomnia, phonophobia, tinnitus and everything hurt my ears. I was unable to study, to travel, to meet people. Even with the best plugs I could find and the best mufflers on them, I was scared to go out.
I guess I didn't talk in the phone for two years and just stayed home and got thin because of malnutrition. It was hard to get food with no money, and even when I had some I was so afraid of the sounds that I rather just stay home and only ate when I really really had to. I didn't wash my teeth because the sound hurt me. So I had no social contacts, no work, school, or anything for some two years, just staying home. Finally I went to see a specialist but he just told me that I'm the worst case he has ever known of, and just wished me good luck. Well, things went on, the hyperacusis just got worse and I was getting very nervous because my whole life was about acoustic accidents and trying to recover. And then it all changed.
I had a tooth ache and thought that "this is my end". When I was unable to brush my teeth for a long time, I knew there was no way my ears could cope with the noise of drilling. I knew I had nothing to lose. I had to do something, and do it fast.
I had tried pink noise therapy earlier but didn't get anywhere. This time I had a good motivation, and most importantly, I was able to throw away my fear because I knew that if my condition would not get better quickly, the dental operation would make it permanently much more worse.
I found studies about antioxidants protecting inner ear cells from damage. I started to take big doses of Vitamin C, E, A and Magnesium. I just went out and unplugged myself and started to listen to pink noise. I stayed outside many hours each day, walking in the forest and having the pink noise playing trough my headphones. I wanted to make fast progress so I had the volume always as high as I just was able to have, and I tried to take my thoughts away from sounds and just walked, run, and jumped in the forest for hours. I was counting days to my dental operation and just tried my best all the time.
Well, two weeks passed and I went to see my dentist. He told me that my teeth look great and there is no problem. I was stunned but happy and now that I knew how I was able to make rapid progress, I rented a house in the rural area and moved there and continued my therapy. I was stayed there for months, eating and sleeping well and exercising and walking all the time and listening to pink noise. I was much more confident now that I was taking those vitamins and believed in the protection they offer to my cells.
I found out more little tricks to speed the process and now, after six months, I can live in a big city without any protection. I even tried to go to a dentist and the drill noise didn't bother me, it feels great, I feel like a living creature once again
I hope that my experiences with this condition will help somebody to recover.
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