HYPERACUSIS CENTRAL

William’s Hyperacusis Story

by | Oct 3, 2023 | Patient Stories | 4 comments

My first experience with tinnitus took place when I was ten years old. I was being bullied by some neighborhood kids who had me held down on the ground. One of them lit a firecracker, dropped it close to my right ear, and then let it explode, causing that ear to start ringing immediately. Thankfully, the tinnitus went away over the next day or so.  

My next experience came when I was a teenager. I started playing drums in middle school band class and quickly fell in love with the instrument. I then got my own kit early in my high school career. Somewhere in between, I developed chronic unilateral tinnitus in my right ear, which was mild and stable with a single tone. I easily habituated to it, hence why I don’t even remember exactly when its onset occurred. 

William with his wife and son, playing in the snow. 

A few years later, I bought a new kit and began taking drumming even more seriously. I would wear earbuds cranked to max volume, blasting songs with envious drum work. I wanted to play like them, so I listened to their melodies and played my set at the same time, trying to capture the same tone. I remember hitting my cymbals so hard that my friends had to cover their ears. Surprisingly, my tinnitus never seemed to change, regardless of how long or how loud I played. 

William and his brothers when they used to jam together as teenagers. 

Sadly, I had to stop playing the drums because I developed nerve pain issues. If I played, it would cause shock-like and vibrating sensations to shoot through my arms for hours afterwards. I still get shock-like sensations in my forearms and fingers to this day with activity. The only good thing is that it may have saved my ears somewhat, at least for a while. 

I experienced my first worsening of tinnitus on New Year’s Eve in 2010, while I was at my girlfriend’s house setting off firecrackers and fireworks. At first, I was lighting M60s and tossing them. I tossed one that didn’t explode, figured it was a dud. So I left it laying where it had landed. My girlfriend’s siblings had an RC car I wanted to light up — I was a little destructive, ha ha — so I propped it up on some bricks and put a fountain sparkler underneath it. When I lit the fountain sparkler, the car caught on fire immediately and started to melt. My girlfriend’s mother told me to move a cannon firework that was nearby so it wouldn’t be set off by the blaze. As I reached down to grab the cannon firework, the M60 I previously thought to be a dud caught fire, and ended up exploding about a foot from my right ear.  

At such close range, it sounded like a flash bang grenade going off. I had instant hearing loss and an immediate substantial increase in the volume of my tinnitus. While the loudness of the ringing did subside to a degree over time, my tinnitus remained louder overall and became more shrill. Fortunately, it stayed unilateral and remained a single tone. Eventually, I once again habituated. 

William holding his son with cotton stuffed in his ears.

In 2015, I went to a Breaking Benjamin concert. During the show, my ears started to feel strange. Then, I began getting electrical jolts in my brain from the loudness of the music. These jolts were disorienting and caused me to get dizzy. I didn’t have any ear protection, so I ended up stuffing my ears with cotton, which seemed to help a little. After the concert I was relieved, as this issue went away. 

For quite some time after the concert, I got regular ear infections and had bouts of ear pain. I would sometimes put medication on cotton balls and then leave them stuffed in my ears to try and help with the infections. During this period, I also had a lot of ear itching, though I couldn’t really tie it to anything. Eventually, these issues cleared up.

For several years, I didn’t have any further ear problems, but I began to experience some other health issues. I started having a lot of neck pain, migraines, and developed occipital neuralgia. The neck pain and headaches would later begin to act in tandem with both my tinnitus and soon to come hyperacusis. 

New ear problems began to crop up at the end of 2020. I got what I believe to be my first hint of hyperacusis when I started having mild sound sensitivity to my wife and son’s voices. My eardrum would retract and I would get a sensation of discomfort in my right ear when they spoke. In January of 2021, I suddenly began having episodes where I would experience vertigo attacks, fullness in both ears, and increased tinnitus. Once again, these new issues subsided with time. Unbeknownst to me, my luck was running out though.  

A few months later, I got a COVID vaccination and woke up the next morning with my tinnitus screaming louder than ever. Initially, the spike started to come down, but then two weeks later, I awakened in the middle of the night to my left ear ringing loudly also. This is when I began to panic, since my tinnitus had always been unilateral.  

This time, instead of improving, things kept worsening. My tinnitus started spiking like crazy for random intervals. I developed a new reactive tone in my left ear that sounded like knives being sharpened profusely. When compared to the other tone in that ear, it was entirely different. When I exposed to noise, it didn’t raise in volume. Instead, it became more and more shrill. My hearing began to fluctuate in a strange way. Some days, I had difficulty hearing sounds, but other times, I had loudness hyperacusis at the forefront, where sound was amplified. I also developed sound sensitivity to high frequency sounds, like dishes clanging together and my computer fan. When tired, my sound sensitivity would always worsen and any noise would cause a startle response, even mouth noises or my neck cracking. Though I mainly got discomfort from my sound sensitivity, I began having periodic pain sensations in my left ear, like stabbing, prickling, and burning that was possibly a delayed reaction to noise exposure. 

As mentioned previously, my other health problems began to influence my tinnitus and hyperacusis. My neck posture and pain level started having a big influence. If I slept in a bad position and woke up in pain, I’d have worse tinnitus and increased sound sensitivity.

William petting his dog Roy. 

My left ear tone became very somatic and would spike to neck movements throughout the day. Strangely, if I have a migraine, my tinnitus and hyperacusis would seemingly improve, even into the following day. With all this going on, I started searching for answers on support forums.  

I found recommendations for addressing general health-related stuff, so I started a healthy diet and began exercising. I lost twenty pounds and did see some overall improvement in my conditions. I was feeling encouraged and looked into other approaches. To my dismay, the other recommendations I found didn’t work out well for me. 

One of those recommendations was to start a sound therapy regimen for hyperacusis with an audiologist. Once I started the program, I noticed that my tinnitus would spike to the noise and my sound sensitivity would increase. When I asked my audiologist about this, I was told it was normal and to just continue the program, but to try reducing volume, testing different colors of noise and shortening the duration of exposure. Eventually, when it kept happening, she recommended that I try using low NRR earplugs to reduce the volume even more. Regardless of the volume level, the color of noise, or the duration, my ears continued to react negatively to the program. Ultimately, I decided to stop because it was only making me worse.  

Another ill-fated recommendation was to start seeing a chiropractor. After my adjustments, I began getting what I call “the buzzsaw” — my most intrusive tinnitus tone — and my sensitivity to sound would worsen. 

I progressively worsened throughout the duration of sound therapy and going to the chiropractor. Little by little, I became sensitive to more things and my reactive tinnitus began to react to those things. First, it was my laptop, then television, followed by ceiling fans, then the hum of my refrigerator, and finally the A/C in my house. Unfortunately, I was following yet another recommendation that turned out to be bad advice, applying the concept of mind over matter. I kept reading that my brain needed to be retrained, so I told myself the spikes and increased sensitivity weren’t harmful and I just powered through them at first. With my diet in place and my sense of optimism, I was coping well with the negatives, until I finally couldn’t anymore. Slowly, my sleep became more fractured and I developed distortions and reactivity in my right ear. 

William and his wife.

In retrospect, I wish I had rested my ears instead of continuing to pummel them with sound, and I wish I had steered clear of chiropractic care. Perhaps there would have been a better chance at healing. I now have to lead a quiet life and wear hearing protection in many circumstances. And even then, my symptoms continue to fluctuate wildly. At times, I feel like I’m riding some hellish rollercoaster. A few good days will slowly lift my spirits, only for them to come crashing down again when I hit another rough patch. The possibility that things could get worse is always looming in the background. I’m grateful now for the simple things I can still enjoy with friends and family. They help me make it through, as I try to keep hope alive that one day a treatment will come for these miserable ailments. 

4 Comments

  1. Kathy

    I can certainly relate. I have Loudness H, T with multiple sounds and worse yet reactive T to sound. The ear generators with CBT do not work for severe cases. I do believe those that have gotten better from it would have gotten better anyway. The hearing community needs to take theses hearing conditions more seriously. More research needs to be done. I honestly believe it may take a celebrity or doctor that acquires these debilitating conditions to get anything done. Take care and thank you for posting your story!

    Reply
  2. Rebecca Dand

    Thanks for sharing your story
    Hopefully it can help others. Pets are great therapy ! Take good care

    Reply
  3. Pat Pacer

    God bless you indeed. I have been going through all you mentioned for 45 long years. I feel like I am close to finding a break through because of a swollen left eye, left sinus, left cheek muscle, left jaw, which are all swollen & spasming out together. I also have full body CRPS and Trigeminal Neuroglia. What I am trying to say is to look at the Trigeminal Nerves V1 V2 V3 on the left side, and every other Trigeminal nerve on the right side and in between because there is a very, very strong correlation with the neck, shoulder, arms, hands, head and even the scalp head ear pain. At present I am trying to survive at the end of a 209 yard dead end street. Our Duryea borough white trash truck and others insist on backing up the 209 yards to my home. They know I have the stuff mentioned above and just laugh and three times a week assault me with their never-ending backup alarms plus. I am literally praying to the good Lord to take me home, and out of this man intensified made hell. I am to the point I am unable to travel now because the road noise and vibrations are more than this body can handle. Fingers crossed & saying a prayer that you can continue to travel and enjoy life with your family. Thank you for sharing your story, good god we are all in the same boat, and without life jackets.

    Reply
  4. george E lopez

    Hi , All day i skipped having a loud noise at work.. I drive VA vets to and from home and hospital… Came home ate with wifey… (told here many times be careful with dishes and knives) and bbbaaamm lets a heavy knife onto dish. Ear says oohh my what a jolt…. AAAALLLL dayyyy no worries… come home and yikes . So yes home is more dangerous than outside,,, III think !!

    Reply

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