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.