HYPERACUSIS CENTRAL

The Choice I Wish I Never Made

by | Apr 19, 2024 | Patient Stories | 10 comments

Asséla Ogab, 2022.

Author: J. D. Rider

For hours every day, Asséla Ogab used to wear her headphones like a ritual, jamming music faithfully as time ate life with different tunes, her favorite songs like ornaments that gave her life a shiny edge before they would dismantle it, where now she never listens. She can’t take music anymore, not by any means. Not headphones nor a speaker box, as music causes pain. 

Singers shake her damaged ears like piercing, violent earthquakes. Drums are hellish cannon blasts. Guitars as angry instruments that bring her to her knees. A precious, sacred attribute of life had died so tragically–her love for songs and symphonies. And she was left with suffering that most can’t comprehend: the throes of noxacusis, a rare but fatal monster, causing ears to feel pain to almost any sound, the pain like knives and burning coals, the sounds like screams from dying souls that wish for resurrection; and plus her awful tinnitus, phantom sounds of many tones that worsen exponentially with noise stimulation; and thumps inside her fragile ears that rage like feral drumbeats–tensor tympani syndrome

“I still can’t believe this. Headphones ruined me. My life is prison now. They started a fire that won’t burn out. It keeps spreading more and more. All those years I was deconstructing my ears with abusive levels of sound. But I didn’t know, you know?”

Asséla, 26 now, wrote to us through flowing tears from her house in Algeria, “I never leave home anymore. I can’t because my ears.”

With youth and aspirations, she thought she had a destiny of greatness that awaited her. She even planned a nice career to be a nurse in hospice care. She loved to care for other folks, loved her weekend hobbies. She’d often go to theaters to see the newest movies. Though all of that is gone now.

But she is not alone. Others cry disaster. The choice I wish I never made: words that echo tragically through 4 participants, headphones like a charlatan who stole life’s precious value; ate their free humanity and gave them pain and misery and undiluted nightmares. The choice THEY wish they never made, but now they can’t reverse it.

Just ask Michael Erickson, a man who’s young at 28 and lives in Tampa, Florida. “I’ve been gigging for years now. I’m a musician. Was in bands in high school, too, and never had a problem. Yeah, I’d get temporary ringing after some events. It went away within hours, though. Always did. That’s pretty common with people. Not until I started using open-ear headphones did I get tinnitus that stuck around. Fairly quickly, too, a couple weeks of using them. I got the classic EEEEE. Then it turned reactive. Now I’m homebound. My tinnitus spikes to everything and keeps getting worse. This ruined my career. Headphones are dangerous things.”

The scary thing, however, is doctors won’t agree. On the contrary, ENTs and most tinnitus and hyperacusis specialists will advocate the use of headphones for masking or sound therapy. It’s SOP for them. Even if you ask them, or tell them headphones hurt your ears, they’ll say that it’s not possible, or that you’re being anxious. Probably both assessments. And that absurd development would happen to another man: Jonathan Thomas, 35, in Delaware, Ohio.

“I went to an ENT doctor because tinnitus started after wearing headphones for 6 days. I was listening to podcasts a lot during the COVID lockdown . . . normal volumes. I used headphones so I wouldn’t disturb my wife and young daughter. Well I freaked when a loud hum started in my left ear. A bassy, terrible thing. Very, very intrusive . . . even to this day. It hasn’t let up at all, not one da*n bit. And then mild H kicked in. [Loudness hyperacusis, he said, often considered a milder version of noxacusis. With loudness sound is deafening, but not quite as uncomfortable.] Well the doctor told me that headphones can’t do this sh*t!” he wrote with LOL, because, “It was insulting! A joke I even went there. I know they did it! He then referred me to their tinnitus doctor and she said the same thing! Said my problems were caused by anxiety or stress or some sh*t. No, it was damage! The headphones! An acoustic trauma, doc! And it’s gotten worse since. I have trouble being around my wife and daughter. They make too much noise. And I’m usually at home now. Can’t leave since T’s reactive. [tinnitus] I have to work from home.”

When Jonathan was asked if external speakers are equally dangerous he replied by saying, “No, I don’t think they are. I’ve used them forever and was okay.”

But what makes headphones more a threat than speakers on a wall? The theory or hypothesis–and yes, it’s only theory–is sounds at that proximity have nowhere else to go. They’re closed-in on the ears. So more or less, wearing headphones directly places noise in the ear canal with no way to disperse out. It traps it, basically. So users are hitting their acoustic organs head-on. 

Think of it like a cave. If you yell inside a cave, a boxed-in place or atmosphere, the acoustics throw it back, causing massive echoes there and noise that is louder. There’s nowhere else for sound to go. But if you go outside, the yell will be less powerful, more dull and less abrasive, less trauma to your ears. Perhaps the headphones are the cave. Sound hits you like a bull’s-eye, or bullet if you’re vulnerable. So sadly for some innocents, it proves to be disastrous. 

Headphones: the choice they wish they never made..

Muhammad Bénichou, living in Algeria and only 33, also faced the ugly side of headphones and their savagery. “I got ten out of ten tinnitus from headphones. Deafening tones, like a whistle and klaxon. I was listening to music on headphones at normal volumes. Not loud, to be honest. I also worked in a call center where I wore them. All that caused this tinnitus and moderate hyperacusis. Sounds like trucks, chainsaws, tractors, mowers torture me so badly. The tinnitus makes me homebound, makes it where I can’t work. It’s too reactive now. [to sounds] Worsens with exposures. And when I push exposures, it always worsens me. It doesn’t go back to baseline.” 

Four souls now on house arrest because their use of headphones, and many more across the globe. What a painful tragedy. Asséla said, “They started this! And now I can’t do normal things. Can’t bathe, cook, do anything. For the life of me I can’t sleep. I only get three hours now, and sometimes only two. Eating’s super hard. Everything makes noise. I can’t do laundry, either, the basic stuff in life, as sound is made by all of it. I can’t stand people’s voices, or even use my own voice. Sneezing is a no-no. It’s the most sadistic thing. These have to be some of the most inhumane conditions around.

I can’t take medications, as most are ototoxic, and worsen my conditions; even cefuroxime, a light antibiotic the doctor and the internet had claimed would be a safe one. Well it wasn’t. Heck, I can’t even go to my backyard with protection on. [earplugs or earmuffs] The ambient noise of nature and the world are just too much. Protection only offers a slight amount of help. It doesn’t block enough sound, even for a bath! Sounds cut through like butter knives.”

And though the headphones started this for poor Asséla Ogab, a turning point would come about that made things even worse. It was November 2023. During a sinus infection she yelled and hit her desk with a large baton. That was the final straw. Her hearing changed dramatically, her crippling pain to noise–that beast called noxacusis–the hell which now ruled over her with total tyranny. 

Present day is suffering . . . beyond her strength to battle this, her ears like death and torture traps. Like fists of brass. Black, blue. Bruises every day. Destruction to her life. The pull of persecution. Blood. Endless blood. Drops like rain that never ends. Drumbeats that reverberate and chant a harsh apocalypse. And also blaring tinnitus, the moans and screams of phantom sounds.

“The ringing’s beyond loud. I can’t focus on anything because it’s so intrusive. With hearing protection on, which I have to wear constantly because every sound is painful, the tinnitus is so loud I can’t hear my surroundings. As if that weren’t enough, it’s also so reactive. When I hear sounds, my ringing spikes louder. Even breathing and simple movements spike it. Bones cracking. Rustles of bedsheets. 

It’s all I ever hear, really, and it never goes down in volume. I just listen to this deafening wall of screeching all day and sit in my house, cut off from the world, as I keep getting worse if I go around sound at all. And what’s terrible is it’s permanent, if I go around it. The spikes become the new level of hell I have to live with. Imagine that: having to hide from all sounds because they torture you. It’s like living in a little room and having a violent predator waiting outside your door at all times. The door can never open. And the predator often bangs on the door, despite my carefulness, ’cause sound can’t be avoided. It’s everywhere in life.”

Like many with these ailments, Asséla saw a doctor, but it was always futile. The doctor boldly pointed out that treatments don’t exist. The doc did not, however, disclose she should protect her ears to stop the violent bleeding. 

Asséla before her worst injuries, 2022.

“Before things got severe, I just had mild tinnitus and a slight sensitivity to sound. The mild ringing had started in my left ear around three to four years before, barely audible. The mild hyperacusis had started in late 2022. The doctor said I’d need to get used to both, and never advised me that life changes were necessary to protect myself. So I continued living my life as normal. I kept using headphones and going places that, in hindsight, I realize were too loud. If only I had known, though.

Back then, even my search on the internet only led me to misophonia information. With the little information I had, it wasn’t enough to find noxacusis and hyperacusis, apparently. No one had my back. It led me to make decisions that caused these symptoms to become overwhelmingly ruinous.

So once things got worse after I yelled in Nov. of ’23–what I consider my deathblow trauma and also the straw that broke the camel’s back–I went back to the same doctor and she didn’t try steroids or anything, the stuff that’s proven to be effective for acoustic traumas, at least. She sent me on my way with nothing, a boat without a paddle. I wasn’t even diagnosed.

I searched the internet deeper and finally found the answers: that I had noxacusis or hyperacusis; I also learned about tinnitus more and reactive tinnitus, and other ear problems, too; and most importantly, I learned I’d need to isolate from sounds to stop the sinking. But tragically I was a day late and a dollar short. The damage had screwed me over. Again, if only the doctor had warned me properly from the get-go. It’s beyond tragic, really.

There’s so much confusion and misinformation about these conditions that people get deceived, the sufferers and the watchers; even the doctors. Through support groups I’ve met countless noxacusis sufferers. They tried to take in sound and had setbacks, or worsened more than ever. It seems to depend on the person. Each case is different. Let me tell you that I, as a sufferer, can testify MY obstacle. I needed to avoid sound. I’m worsening because I can’t completely. Now that I’ve gotten so bad I can’t. Every sound is venomous. When things get too severe, that’s what sadly happens.

The noxacusis is burning, stabbing, pricking sensations when I expose to sounds, like nails being hammered–my ears their destination–or hellish, flaming, vile coals. It’s otherworldly. I’m crippled by my ears.

Thankfully the burning sensations of pain went down within a few months, and also the stabbing knife sensations. They’re better than they were. But now my loudness hyperacusis is so much worse . . . so much; sounds are deafening, like winds from hurricanes. My tinnitus, too. I also have tensor tympani syndrome, a constant thumping feeling in my ears that’s like a rapid drumbeat. All this stuff together is torture. Even having one of these things at severe levels would be bad enough to deal with. But I have all of them. 

And now my eyes are getting sensitive to light and have visual snow, as well, like a grainy-looking texture to everything. Sometimes people with noxacusis get eye issues for some reason, as if the nerves affected are all connected. Maybe the trigeminal nerves. To some degree, they control the eyes and ears. So I’m fighting a world built on sound–it’s pretty much everywhere–and a world doused in light, too. Both are now my allergies. 

But my light sensitivity has gotten really bad lately. I’m gonna need to be blindfolded most of the time from now on, but no one in my family is willing to use my phone in my stead to keep contact with my friends and acquaintances. They won’t let me have friends over for quiet visits. 

I can’t get my family to understand this. No one does, not even doctors. And that’s like persecution. I also have Asperger’s and people have often been apathetic towards me because of that. It doesn’t help with this. They dismiss you, like my family. My family is loud. They keep making noises with blenders and artificial audio. Slamming doors and talking with voices that thunder. I wish they understood I do need protection, or I’ll just keep on worsening.

I can’t find a quiet place to rent. I might have to risk everything and go to a city in the desert–a 17 hour car ride–to stay with a friend, but I’m still not sure about how quiet his place is. I can’t believe this is my life. The struggle with rent is not just about finding a quiet place and not having money but also how landlords mostly refuse to let a woman rent by herself. Here in my country that’s the way it is. And I need a caretaker for at least a month, though hopefully I could manage by myself after that. I guess I either make the trip or my life is over.

I want people to read my story and understand all this. And hopefully if anyone else gets these problems they can find this story and stop the bleeding before it’s too late. I wish I had. I wish the world cared. I wish that there were treatments. Or big funds for the research side. The cruel reality is there isn’t. No help is coming for us, as far as I can tell. 

Everyday I’m shocked, angry that headphones took my life away. Had I just not ever touched them, I’m certain life would be okay. They don’t even have warning labels on them, or mine didn’t, anyway. It’s wild. Take care of your ears, readers. Baby them. Be wary of the headphones. It could save your life.”

Author: J. D. Rider

*Of the 4 participants, some names were changed for privacy requests.

10 Comments

  1. HighleyTall

    Earpod generation, a disaster in the making.

    Reply
    • jonas

      Hi, I believe you are Belgian right? So am I, would you like to get in touch with more Belgian sufferers?

      Reply
  2. Azad Yilmaz

    I can feel her. I got H, T and TTTS because of headphones too. If I had the authority, I would restrict all headphones.

    Reply
    • JD Rider

      I would, too. Thanks for reading.

      Reply
  3. Jon

    Why are these written like it’s a comic book. The creative writing goes to far. Almost makes it like a story instead of someone actually suffering.

    Reply
    • JD Rider

      Well these ARE stories. We often call them stories in the titles. As such, the intensities of each participant’s struggle are sometimes given “spotlight treatment,” (by me, at least) where often imagery is mixed in to capture the hells endured on a routine basis. Doing so, in part, allows the non-H reader to fully grasp the devastation H imposes on each participant’s life. We appreciate the feedback and would like to hear how you would approach a patient story. Since we’re critiquing, however, bear in mind that you should use “too” next time, not “to” as you did when saying “to far.” And especially when you’re on the subject of critiquing writing.

      Reply
      • Jon

        Well my spelling mistake is from being dyslexic. Something I can’t always help but your writing style is your choice. I’d approach less as creative writing if this is what you want todo I’d write a graphic novel. Not use real people’s stories to satisfy your creative need. A more factual style would come across more serious and sound less of a fantasy. This condition is horrendous enough without the need for the comic book style.

        Reply
        • JD Rider

          We appreciate your feedback. Writing and how it connects with the reader is a subjective opinion, of course. And your opinion matters just as much as anyone’s. Most people have given great feedback on here and on other platforms where I’ve written stuff. You’re the first to offer constructive criticism for one of my pieces. I see what you’re saying and you make good points. I’ve had countless people tell me I’ve put these conditions into words effectively. In ways that nail just how horrific they really are. So I think this ties into that subjective experience of how a reader digests what they’re reading and looking for. I think you find value in news pieces more. Like hard-lined journalism. Which I do understand. It comes off as credible with that approach. We’ll have more patient stories coming soon. Keep following our work and let us know what you think. Thanks.

          Reply
      • Lisa

        Sir – how do you do it. How? My T is lazer loud. Worsens with the wind. I am locked inside 2 weeks. How do you do it. How do you do it. How do you do it. The food I eat spikes me. I’m in trouble. Hard to last to the end of the day let alone a life time. You were in great shape as was I – help!! I have family with limited understanding. They push meds. Push me to go out when even the wind hurts. God o God. Do you feel anything from God. I feel like this is punishment.

        Reply
        • JD Rider

          It’s very difficult. I have a great family who understands better than most families do. I also have faith in Christ. I don’t think it’s punishment, no. We just got unlucky perhaps. I know the feeling. I’ve been housebound for over two years.

          Reply

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