Ep. 85 | Maximum Volume
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Hey, Prime members. You can listen to new episodes of Mr. Ballin's Medical Mysteries early and ad-free. Download the Amazon Music app today. On a February night in 2002, the guitarist for a Philadelphia rock band was getting ready for his show. He felt the usual pre-show buzz of nerves and excitement as he peeked out from backstage into the venue. The place was absolutely packed.

When the house lights dimmed, he took his place on stage alongside his bandmates and strapped on his guitar. Then he flipped on his amplifier and watched as the drummer counted off the first song. From the first roar of his electric guitar, the crowd danced and shouted. The music was heavy but poppy, with lots of thick guitars and crashing drums. Playing so intensely made the guitarist wildly excited. For their final song of the set, the guitarist stepped on his distortion FX pedal to make his guitar sound gritty and distorted.

As the song built to a climax, he leaned close to his amplifier to lose himself in the swirling wall of noise. But as he did this, he felt something deep inside of his ear twitch, followed by a stab of pain. He strummed through the rest of the song trying not to grimace, but as soon as it was over, he rushed offstage to the backstage green room. And there, it was empty and quiet. However, he could still barely hear the faint sound of the crowd applauding.

Every clap he could hear, even though it was faint, hit his eardrum like a nail being driven into his skull.

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From Ballin Studios and Wondery, I'm Mr. Ballin, and this is Mr. Ballin's Medical Mysteries, where every week we will explore a new baffling mystery originating from the one place we all can't escape, our own bodies. So if you liked today's story, please offer to take the follow button swimming in a beautiful picturesque lake, but don't tell them the water is actually infested with piranhas. This episode is called Maximum Volume.

In the summer of 2001, a suburban mom in her late 50s named Cindy Truman stood nursing a beer inside of a Philadelphia dive bar. The venue had a small stage in the corner where her 31-year-old nephew, Jackson Domenico, would soon be playing with his band. Cindy didn't know much about the kind of music her nephew made, but according to her son, it was very loud.

She noticed one of her nephew's friends, Matt Chambers, at a table against the wall. He waved her over and he warned Cindy to prepare herself. Jackson's performances could get pretty crazy. About 10 minutes later, the lights turned down and Jackson walked on stage carrying a guitar. And he was followed by a second guitarist and also a drummer.

The music started off soft and dreamy, but gradually, Jackson layered loops of noise into a chaotic cloud of sound. Cindy had never heard anything like it. There was no melody or chorus. It honestly just sounded like a thunderstorm. The music echoed all around the room, building into a roar. Cindy at first tried to enjoy it, but honestly, the noise was overwhelming. At some point, she set her beer down and just stuck her fingers in her ears.

Glancing around the room, she was surprised to see that pretty much everybody in there seemed to be enjoying this. In fact, there was a group of guys with long hair standing right in front of the stage swaying violently, headbanging to the music.

Then, at some point, the drummer started going into this frenzy and smashing all his cymbals while Jackson laid on his back and stuck his head right in front of the bass drum. He kept thrashing at his guitar until the drummer picked up one of his smaller drums and hurled it at a speaker. Then Jackson and the other guitarist began bashing their guitars against their amplifiers. Each hit made a clanging, deafening roar like steel beams clattering to the ground. But the crowd just chanted and cheered with everything they did.

After the set finally came to an end, Cindy found herself shaking her head like she had water stuck in her ears. Matt laughed and asked her how she liked it. Cindy admitted this was definitely not her taste, but she was happy to see her nephew pursuing something he loved. Matt told Cindy that he agreed with her and thought the music sounded like an airplane landing, but he agreed. It was great to see Jackson having so much fun.

A few minutes later, Jackson came out from backstage and joined Cindy and Matt at the table. He was smiling ear to ear and covered in sweat. Cindy gave him a big hug and said congratulations. Then she asked him when his next show was. But Jackson shouted that his ears were ringing too loud for him to hear anything. He told her this only lasted for a few hours after his show, and then it went away. A small price to pay for getting to do the thing that he loved most in the world.

The following year, in the spring of 2002, Jackson sat inside of a French airport terminal waiting to board a flight back home. He had just finished up a month-long tour of England and other European countries playing guitar for a different band than his usual group. Normally, he would have loved for the tour to last as long as possible, but this time he was actually pretty eager to get home to Philadelphia.

A few weeks ago, something had happened during one of their shows. Jackson had been on stage playing guitar, getting lost in the music like always, when he felt something inside of his ear spasm, or maybe even snap. At the time, he was so focused on just getting through the show that he hadn't thought much of it. Their performances were always very loud, so it was common for his ears to feel a bit battered afterwards.

But this time was different. The following morning, Jackson's ears were not ringing. They were throbbing. It was hard to describe. His ears hurt in ways that they never had before. Now, normally, after a particularly loud show, Jackson would notice that sounds were a bit muffled, like his hearing had been temporarily dulled by the excessive volume. But this now was the opposite. His ears felt intensely sensitive and full of pressure, similar to the way they felt on an airplane during takeoff or landing.

Although this feeling was much worse than that and much weirder. Jackson's hearing was now so sharp that even the smallest sound seemed so loud. Just walking down the block to the pharmacy to buy earplugs had been an ordeal because of ordinary sounds. Buses breaking, shop doorbells ringing, movers shouting as they unloaded a van. It felt like the everyday sounds of the city were attacking him.

When it was time to board the plane, Jackson switched with his bandmate and took the window seat to try to isolate himself as much as possible. His earplugs helped a little, but not enough. Jackson pulled his beanie down over his ears, closed his eyes, and slumped against the window. He hoped the cabin pressure wouldn't make his ears feel worse than they already did. Jackson promised himself that the second he got home, he would make an appointment to see a doctor and find out what was going on with his ears. He needed to get this fixed in time for his next show.

Another year later, on an autumn afternoon in 2003, Jackson lay on his back with his arms at his side, gritting his teeth in pain. He was inside a white cylindrical MRI machine that was so giant it looked like part of a space shuttle. For over half an hour, Jackson flinched as the machine droned, pulsed, and screeched. Anyone would find its harsh mechanical sounds abrasive, but for Jackson, they were torture. The session left him feeling totally ragged.

But Jackson didn't have a choice. Ever since returning to Philadelphia from his European tour last year, Jackson's hearing had only grown more sensitive. Now every sound, even extremely quiet ones, caused him stabbing physical pain. Making it through a regular day in the city with all its harsh noises was nearly unbearable.

However, despite a full year of medical appointments, Jackson's search for a cure so far had been fruitless. Jackson had visited every type of specialist: ear, nose, and throat doctors, neurologists, audiologists, psychiatrists, even dentists. Each of them had different theories about what might be causing Jackson's sonic sensitivity, but none of them knew for sure. But even more disappointing was that none of the doctors knew how to fix Jackson's condition or if it was even possible to fix.

One dentist that Jackson met with thought that his hearing sensitivity might be related to an unspecified issue with his jaw. And so he had Jackson wear a mouth guard for several months to see if it made a difference. But it didn't. Another doctor suggested that Jackson try sound therapy, a method that used gentle ambient background sound to recalibrate the ears. But Jackson couldn't take it. Even at the lowest volume, the soft sounds felt like steel wool scouring his brain.

Other doctors proposed more holistic remedies like acupuncture, while some just told Jackson his best bet was painkillers. And so Jackson tried a wide variety of medications and treatment, but he never got more than short-term relief. The pain always returned just as severe as before. Finally, all the sounds of the MRI machine sort of ebbed down to a hum, and then the machine went quiet.

The table that Jackson was lying on slid out from the tunnel of the machine. Once he was out of the MRI, Jackson sat up, his head in a fog. He felt battered and woozy from the long, noisy session. Jackson's doctor told him that he would assess the results of the MRI scan and be in touch soon. Jackson thanked him, but realistically, he didn't feel optimistic. So many of the doctors he had seen had told Jackson they just couldn't determine anything actually medically wrong with him.

Some of them even implied that the pain might be psychological, like Jackson was just imagining it. Jackson carefully inserted his custom earplugs and then stepped out of the clinic into the cold, windy parking lot. His mind wandered as he drove to his Aunt Cindy's house in the suburbs, where he was currently living in her basement.

It was not an ideal living situation, but it was at least a lot quieter than his apartment in the city. Plus, Cindy had loaned him her old car so he could drive to his office job at a cable company instead of taking the bus. Being able to roll up the windows and keep the noise of the world at a distance was life-saving right now.

As Jackson opened the door to his aunt's house, he heard the whole family in the kitchen eating dinner. He would have liked to join them, but the sound of metal utensils on plates was just too painful for him to be around. So he had actually begun eating meals alone because of it. Just as Jackson headed downstairs to his room in the basement, he overheard his name being mentioned at the table. It was his cousin's voice, scolding Cindy for babying Jackson. He told her Jackson's only real problem was that he was lazy and depressed.

It was not the first time he'd heard someone mock or deny his condition. But it still made Jackson's blood boil. To be in agonizing pain day and night, yet not be able to medically explain it, or even prove that it existed, just added another layer to his sense of being cursed. If he had, for example, lost a limb, something obvious, people would accept and understand that he was suffering. But with this, he was lost in his own private, misunderstood hell.

Downstairs in the basement, Jackson closed the door and crawled into bed. He looked over at the corner of his room where his guitars and his amplifiers were shoved in a pile and covered by a sheet. It was a reminder of everything he had lost and left behind. He hadn't been able to play guitar for the past year, ever since his hearing had become painful. And in losing music, Jackson felt like he'd lost part of himself and he was scared he might never be able to get it back.

He swallowed a few painkillers and then put a pillow over his head. All he could do was try to shut out the world and disappear.

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The next morning was like all the rest. Jackson woke to the sound of muffled footsteps upstairs, which to him sounded like a giant stomping around. Jackson crawled out of bed and dressed for work. Thankfully, his boss was understanding and flexible about all of Jackson's doctor visits. If anything, his boss actually seemed pleased that Jackson had stopped requesting extra time off for music tours.

After a stressful drive through morning rush hour traffic, Jackson clocked in and went to his cubicle. Even with his earplugs in, the click of keys on his computer felt like little tacks poking into his skull. Luckily, his work phone, which rang often, could be permanently muted, so there was just a little flashing light to indicate when a call was coming in.

At first, Jackson had tried to explain his condition to some of his coworkers, but they had so many follow-up questions. And frankly, conversation itself was just so painful for him that he wanted to avoid it. So now he basically avoided all of them. He ate lunch alone at his desk, using only paper or styrofoam dishes. Anything else was too loud.

Before this all started, Jackson had not minded his boring job because he was always daydreaming about new music to make or anticipating a music gig coming up. But without music or a social life to look forward to, his routine became increasingly joyless. Driving home, he couldn't even listen to the radio. He just sat silently inside of his metal box and tried to avoid getting honked at.

Back at his Aunt Cindy's house, he slipped quietly in the back door and went downstairs. Day after day felt just the same, like he was a ghost trapped outside of life looking in. Jackson turned on his computer and emailed a few music friends. He tried not to sound bitter, but it was hard when all of his old friends were still making records and playing shows and going to parties like nothing had changed. Just then, his Aunt Cindy cracked open the door holding a plate of dinner. She tiptoed inside and then handed Jackson the food and took a seat on his bed.

She whispered for him to not give up hope. She promised they would not stop looking for a doctor who could help him, but Jackson just nodded blankly. Then he went to the corner where his favorite Fender guitar lay beneath the sheet. He grabbed it and handed the guitar to Cindy and told her to give it to his cousin Megan, who had just started taking guitar lessons. Jackson had played this particular instrument in every single one of his performances since he was a teenager, but now he couldn't stand to be around it anymore. It was just too painful of a reminder.

Cindy looked troubled and just gave Jackson a long hug. And while Jackson knew she meant well, this actually made him feel like an invalid. Jackson was tired of being such a burden to his family. After Cindy left, Jackson began making a list of friends and family to give away the rest of his music stuff to. He wanted someone else to treasure these instruments and the equipment and the records that had brought him so much joy over the years. Whatever Jackson's future looked like, he knew it would have to be lived in silence.

Three years later, in the summer of 2006, Jackson stood among a pile of cardboard boxes in an empty apartment. Even though his hearing was just as painful as ever, he had done the unthinkable, moved out of his Aunt Cindy's basement and rented his own apartment in the Harlem neighborhood of New York City.

He felt intimidated, but also excited. And it all happened so fast. A couple of months earlier, Jackson's friend, Matt, had forwarded Jackson a listing for a job opening at the same big media company where he worked. Despite his reservations, Jackson had applied. And the very next week, he received an email that he had been hired. Holding the apartment keys and standing inside of his clean new place, Jackson allowed himself a small moment of happiness. Maybe there were better days ahead for him.

And Jackson had another reason to be hopeful. He had heard about a neurologist at Columbia University Medical Center, which was in New York, who was renowned for treating rare hearing conditions. It seemed like there was a chance he might be able to help. A week later, Jackson went to the Columbia Medical Center for an appointment with that neurologist. Crossing the city on foot with his condition was not easy, but he kept his earplugs wedged in tightly, with a thick winter hat pulled down low, and he avoided the busier streets.

Jackson spent the day at the medical center. The neurologist ran a battery of tests to assess Jackson's condition. He had Jackson put on headphones and listen to a series of very subtle sounds to chart his range of hearing. Other tests were more mental, like memory games and problem solving. The neurologist also studied Jackson's other senses, like his vision and sense of touch. And so Jackson left the clinic feeling sort of unsure about what had just happened, but he was cautiously optimistic.

A couple of days later, Jackson received a call at work. It was the neurologist and he got right to the point. After thoroughly studying all the test results, it was evident that Jackson's condition was permanent.

The neurologist was familiar with Jackson's condition, and unfortunately, there was nothing he or any other medical professional could do to reverse it. Jackson hung up the phone in a daze. Despite everything he had gone through the past few years, he had always held out a small sliver of hope that some doctor out there might know of an experimental surgery or an expensive hearing aid or something that could cure or at least alleviate most of his condition. But here, finally, was the diagnosis Jackson had been dreading.

It felt like his fate was officially sealed. Music had always been his reason for living, his passion, his escape, his one gift in this world. And now it had been officially ripped away from him forever. Jackson walked to his apartment like a man on death row. His head hung low as he trudged through the chaotic streets of New York. Gridlock taxis honking at each other, hot dog vendors shouting up and down the block, loud musicians playing on every corner. Jackson flinched at the sharp stab of every sound.

Back at his apartment, Jackson sat down on the floor and loaded a pipe with marijuana, and then he lit it. He held in the smoke as long as he could, then leaned back and closed his eyes. He felt like he had reached the end of the road. It had been simply too much pain for too long with no end in sight.

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A few months later, on Halloween night, Jackson's friend, Matt Chambers, turned up his collar against the cold city winds as he made his way towards Harlem. Jack-o'-lanterns glowed from store windows while packs of kids in costumes went door-to-door shouting for candy. But Matt's mind was somewhere else.

Three days earlier, Jackson had not shown up at work, which was highly unusual. Matt called him that night and left a message, but didn't hear back. Today had been Jackson's third day in a row as a no-show and still he had not heard from him. So after work, Matt decided to pay Jackson a visit in person. Once he reached Jackson's building, he pressed the buzzer for Jackson's apartment. He knew Jackson had muted the sound function, but he'd also rigged a light to blink whenever a guest rang.

When Jackson didn't answer, Matt assumed he just hadn't seen the light yet, or maybe he was out somewhere. So Matt decided to go down the block to grab a slice of pizza and wait before trying again. But halfway to the pizza shop, Matt noticed a sound getting louder and louder. Sirens echoing through the streets. Matt looked back towards Jackson's building just as an ambulance raced around the corner, its lights flashing. The vehicle sped down the street and then screeched to a stop as a pair of EMTs hopped out and ran inside the building.

Matt felt panicked as he sprinted towards the ambulance. He had a bad feeling he already knew which apartment these EMTs were running toward. Later that week, Matt stepped inside of Jackson's place for the first time in months. The place looked grim. Dirty dishes piled in the sink, ashtrays full of half-smoked joints scattered all around, unpacked boxes stacked in corners, and it smelled like the kitchen trash hadn't been emptied in a long time.

Matt had been right about where those paramedics were going. That day, as Matt was headed to visit Jackson, someone else had already found his friend's dead body inside of his apartment. Jackson had taken his own life. Afterwards, Jackson's aunt Cindy had asked Matt to help go through Jackson's possessions with her so she wouldn't have to survey the apartment by herself.

And so eventually, while they were looking around the apartment, Matt and Cindy went into Jackson's bedroom and flipped on his computer. Cindy was hoping to find a note of some kind, but the desktop was empty, except for a few audio files and a document of financial information. Everything else had apparently been deleted. Cindy knew that Jackson used to obsessively archive all his recordings, but she wondered if maybe in Jackson's final hours, he decided to just purge everything.

Rummaging through Jackson's drawers and closets, Cindy felt disturbed at how her nephew had been living. The place was cluttered, yet also empty somehow. Cindy knew Jackson had been struggling, but she hadn't realized how hopeless he had become.

Under Jackson's bed, Cindy found a plastic tub stuffed with several dozen manila envelopes. Each was labeled with the name of a doctor he had visited, and each one contained pamphlets of medical information and test results. In a sense, they were a physical record of Jackson's journey through this condition that ultimately killed him. Finally, in a bottom drawer beside the bed, Cindy found Jackson's suicide note. In it, Jackson explained why he had decided to end his life. Her hands shook as she read it.

But for the first time, she understood exactly what Jackson had been going through. The neurologist from Columbia University Medical Center had diagnosed Jackson with a rare disorder called hyperacusis. Also referred to as DST or decreased sound tolerance, its defining symptom is the exact opposite of most hearing afflictions. With hyperacusis, instead of sounds being muffled or faint, they are painfully loud. It's like an inverse form of deafness.

And once the hyperacusis is full-blown, all sounds, all, are transmitted at maximum volume. Quiet sounds are loud, loud sounds are loud. There's no variation, no escape, no cure.

Even worse, doctors have no idea what actually causes it. The only shared trait among most patients is a sustained exposure to noise. People with jobs that require them to be around loud sounds for longer than average are at the highest risk. For instance, construction workers, concert staff, and musicians. But most people who are exposed to lots of noise do not get hyperacusis. If anything, they lose hearing over time.

Not all cases of hyperacusis are equally painful. Some describe theirs as just uncomfortable and not debilitating. But in Jackson's suicide note, he wrote that his hyperacusis had turned his life into a torment. It had imprisoned him in his body and rendered him unable to enjoy anything. And ultimately, it broke him.

It's still unknown exactly how rare hyperacusis really is. The American Tinnitus Association estimates that around 50 million Americans, or 15% of the US population, have experienced tinnitus, which is some form of ringing in their ears. The Hyperacusis Network estimates that about 1 in 1,000 people with tinnitus will also develop hyperacusis. However, for most people who develop this, it is unpleasant but manageable.

But for a select unfortunate few, the pain is unbearable. Its rarity makes it harder for doctors to diagnose and harder for patients to understand or to explain to the people in their lives. Jackson's story still is not understood. Thousands of musicians perform much louder than he did for decades without medical consequences. So it's not just a matter of using earplugs. The fragile inner workings of the ear remain one of the body's great mysteries.

Sadly, Jackson's story serves as a reminder that despite how far modern medicine has come, there's still a long way to go.

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From Ballin Studios and Wondery, this is Mr. Ballin's Medical Mysteries, hosted by me, Mr. Ballin. A quick note about our stories. They're all inspired by true events, but we sometimes use pseudonyms to protect the people involved, and some details are fictionalized for dramatic purposes. And a reminder, the content in this episode is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

This episode was written by Britt Brown. Our editor is Heather Dundas. Sound design is by Ryan Patesta. Our senior managing producer is Callum Plews. And our coordinating producer is Sarah Mathis. Our senior producer is Alex Benidon. Our

Our associate producers and researchers are Sarah Vytak and Tasia Palaconda. Fact-checking was done by Sheila Patterson. For Ballin Studios, our head of production is Zach Levitt. Script editing by Scott Allen and Evan Allen. Our coordinating producer is Samantha Collins. Production support by Avery Siegel. Executive producers are myself, Mr. Ballin, and Nick Witters. For Wondery, our head of sound is Marcelino Villapando.

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