By Jerad J. D. Rider

It all started on July 24, 2021, a day that 33-year-old Samantha “Sami” Jones would rank as unforgettable in STL’s suburbia, the city nicknamed the Gateway to the West in Missouri—St. Louis. For Sami, it would soon become the Gateway to Hell because a friend was blasting music on a car stereo, and it was the type of loud where any person’s hand would reach to switch it off. Though it all happened too fast, Sami shouting, “Turn it off!,” and as the sounds unfolded in the Nissan’s hellish cabin, the driver’s mind had shifted into tonic immobility, where it took 30 seconds to engage the stereo’s switch and kill the music.

Right off the bat, Sami knew that something bad had come about, when to her right the passing bunch of flowering dogwood trees and American sycamores, the cloudless blue firmament, and yellow-green landscape, had taken on a quality that looked just like a whirlpool, and then the road ahead was in a spinning state, dancing and gyrating like the sight of a drunken trip. Sami felt unreality wash over her. Thought: What the sh-t is going on?!?! The culprit was the stereo, and then the more simplistic sounds: the tires hitting asphalt, the humming engine of the car, the blowing air conditioner. Except she couldn’t fathom that, as no one would when introduced to such a strange, unheard-of thing where now her ears were compromised and sounds were hazardous.

Two weeks later, she would understand, and know that this condition was an even rarer version of intolerance to sound than pain and loudness hyperacusis. It’s called vestibular hyperacusis, where sound exposures trigger all or some of the following symptoms: nausea, vertigo, mental confusion, body fatigue, headaches, seizures, and losing consciousness (Johnson, 2025).

Possible Causes

A theory suggests that vestibular hyperacusis can happen due to affected nerve cells in the balance system. Traumatic injuries to the head, or concussions, can be instigators, too (Sami had gotten several concussions in the course of her life, and perhaps that played in a role in her development of this condition), adverse reactions to medications, or even circulatory changes relating to heart disease or artery obstructions (Johnson, 2025).

Sami had taken benzodiazepines before, and exposed to noises moderately throughout her life, the stereo serving as the straw that broke the camel’s back. Perhaps multiple factors led to a perfect storm.

Symptoms

Patients with vestibular hyperacusis were observed in a clinical setting and the outcome showed that some of their symptoms responded to even 30-decibel sounds, affecting consciousness, where some fell out of it and others into seizures (Sami has these symptoms, too). Those affected had had head and/or neck injuries due to car accidents, causing issues with the brain stem and central nervous system. Substantial hearing loss was not a dominant trait among these patients (Johnson, 2025).

But Sami is unique, plagued by high-pitched hearing loss which happened from that stereo. And now she’s so disabled that she’s mostly under house arrest.

“It’s so bad I’m often close to fainting,” Sami wrote. “I’m constantly falling to the floor because of sound exposures. The dizziness also comes from lifting things. And then I get nonepileptic seizures with sound exposures, too. I convulse and sometimes black out. When things get bad my boyfriend has to pick me up and carry me to safety.”

At the onset of vestibular hyperacusis Sami lamented because she couldn’t drive anymore and walking became a challenge, and two weeks after crossing that obnoxious stereo, significant loudness hyperacusis and moderate reactive tinnitus accompanied her obstacle. Her symptoms were bilateral, everything sounding too intense and too loud, both ears ringing with the classic E that never went away (EEEEEE). And other tones as well: crickets and a musical type of melody. Those phantom sounds weren’t stable, though; their loudness and aggressiveness would change when hearing certain sounds (i.e., other people’s voices, her own when speaking loudly, and music and TV audio).

For the longest time her symptoms only worsened, and then September 2022 would bring another blow. Oh yes, another hit. It wasn’t over yet, not by a long shot, sad to say.

It was after 3 P.M. The sun offered some unexpected but dazzling crepuscular rays, so beams that looked like golden pillars shone through the clouds and hit the ground. It livened up the ashen day but it was not a sign that things would soon improve. The appointment hadn’t gone too well, she wasn’t getting feedback from the doctor that seemed hopeful, and now she had to leave and go back to her house. The goal had been to help herself and that was the ironic thing which soon would make the coming problem harder to accept, that she had had the courage to confront her ears and leave her house and see a doc for treatment but the valor of her actions would invite a new tormentor. Her boyfriend pulled into the lot and then she stepped outside. A thirty-second walk to get into the car. That was all it took.

Thirty was the devastating number, the reoccurring number, because despite the 30 seconds, a train track 30 feet away brought a screeching train that blew its horn. It was loud, really loud, and earplugs and earmuffs weren’t enough to shield Sami’s ears. Yes, she wore both, but a sound of that intensity can easily reach 110 decibels (Federal Railroad Administration, 2025). Her mind sank and feared the worst. Thought: Unbelievable! That’s gonna leave a mark. She was right—it did.

The following day her ears began to burn with stab sensations, too. It was noxacusis—in Sami’s case, delayed physical pain that went on for three days. Voices and music and TV audio, and even riding in the car, would multiply the pain. It went away in due time, but kept returning when she pushed her low-acoustic limits, when taking in too many sounds her ears had marked as troublesome. “Thank God it’s mostly vanished now,” Sami wrote of this affair, “’cause it was devastating. Now it’s only mild. It kept improving from avoiding all the noise triggers.”

Thank God, indeed.

“Yet things had gotten so severe with my loudness hyperacusis I was forced to wear earplugs every single moment. Yep, 24/7. And sometimes earmuffs, too. But I heard my eyes blinking and digestive noises. So wearing the protection didn’t help the internal sounds. They still brought me intense discomfort.”

“Eventually, my seizures improved a lot. They only come now if something is very loud. I wish I could say my loudness hyperacusis has improved over time. It hasn’t. It has actually worsened overall. It’s so severe now. Every sound sounds deafening. But my tinnitus has stayed the same, more or less, although it spikes a lot.”

Treatment Options

As many do with these conditions, early in her journey Sami had turned to the Internet to try diagnose herself.

“I found the hyperacusis and SCDS communities (Superior Semicircular Canal Dehiscence Syndrome), and learned about the different types of hyperacusis and how to handle them. I felt I might have SCDS, though, as people can have intolerance to sound because of that condition (and also, hearing your eyes blink, for example, is a telltale sign of having it, and I did hear mine), so I made it my mission to find out if I had SCDS, because if I did, a surgery was possible.

“I saw a couple neurotologists—advanced ear, nose, and throat doctors who specialize in neurological- and inner ear-related issues. The first one dismissed my symptoms and didn’t believe I had a serious issue going on. He ordered a CT scan in February of 2024, and that looked positive for dehiscence, a tiny hole in my left ear, which is a possible sign of SCDS. Then I had an inconclusive VEMP test that was loud and further injured my ears. Going into it, I knew it might be loud, but it’s a requirement for the SCDS diagnosis.”

“It was the second doctor who diagnosed me with bilateral vestibular hyperacusis and PPPD (persistent postural-perceptual dizziness) in January of 2025. It was the first I had heard of that condition, which is chronic and means I get dizzy or have major balance issues.”

PPPD can happen due to vertigo conditions, benign paroxysmal positional vertigo (BPPV), concussions or trauma to the head, Ménière’s disease, panic attacks, strokes, vestibular migraines, and vestibular neuritis (Cleveland Clinic, 2024).

“I don’t know what to think, though. I still think I could have SCDS, but it’s so hard to find a doctor and diagnose it. It takes a real pro. I’ve been looking for third opinions, but I’d have to travel out of state to see these doctors and that isn’t an option with my loudness hyperacusis being so severe. And I don’t want my mild noxacusis to worsen, either.”

Looking Towards the Future

“I think about the future quite a bit. The impact of these conditions on my quality of life has been absolutely devastating. Like, I can’t even see the doctors I need to see. Because these conditions are so horrible, you can’t! You’re so disabled you can’t even seek the help you need. I can’t make money. Can’t work a job or build my career. My career is gone. Before this I was a certified nursing assistant at a nursing home. I took care of the elderly, feeding them, washing them, taking them to different areas in the home, like the beauty salon and whatnot. I loved it a lot.

“A future of seclusion? Never leaving home is so hard to do. I only do for those occasional doctor appointments and knowing that is such a hard pill to swallow. Knowing my social life is gone. Knowing my freedom is dead. I miss talking to people. I miss my happiness.

“As it stands in 2025, there’s no path to recovery. I’m condemned to my house for decades. Can you imagine that? Because I’m allergic to sounds, this 33-year-old is trapped—forever! I just wish that the world would take these conditions seriously, because people like me have lost it all, and if they could live in our shoes, even for a single day, they would understand. They’d feel the physical torture we endure. We’re strong, strong people. And I have so much respect and empathy for anyone enduring this. We desperately need funding, research, and treatments for these auditory disabilities. I hope my story can help the world see that.”

*AI (Artificial Intelligence) WASN’T used to write or edit this story.

REFERENCES

[1]. Johnson, Marsha. Vestibular Hyperacusis. VeDa. 2025. https://vestibular.org/article/diagnosis-treatment/vision-hearing/vestibular-hyperacusis/#:~:text=In%20vestibular%20hyperacusis%2C%20we%20suspect,to%20avoid%20injury%20from%20falling.

[2]. Train Horns and Quiet Zones. Federal Railroad Administration. 2025. https://railroads.dot.gov/railroad-safety/divisions/crossing-safety-and-trespass-prevention/train-horn-rulequiet-zones#:~:text=Train%20horns%20must%20follow%20a,minimum%20volume%20of%2096%20decibels.

[3]. Persistent Postural-Perceptual Dizziness. Cleveland Clinic. 2024. https://my.clevelandclinic.org/health/diseases/persistent-postural-perceptual-dizziness.