Authors

Primary: John

Secondary: J.D. Rider

I hate that I’m writing this, but I must. My story has to be told, and I hope like hell it helps someone. My name is John, a 28-year-old living in Seattle, Washington, and since my situation is progressing so rapidly I’m facing a non-negotiable suicide. What the euthenasia advocates would call an exemplary example of a person needing death. I can no longer talk, eat, bathe, breathe (diaphragmatic type of breaths, and basic, fundamental tasks) without my symptoms worsening. Being in a catastrophic state for nearly a year at the hands of malicious ear conditions known as noxacusis and tinnitus has cornered me into giving up. (Despite being in silence all the time, I’ve worsened to extremes. There is no winning here.) They’ve unsparingly placed me in a deathtrap, where noise results in permanent destruction. But sounds are unavoidable. Noises are everywhere–they’re part of daily life–but I’m allergic to them, even the smallest decibels. A year ago it all happened so quickly it was like I blinked my eyes and then my life was over.

And with these ear conditions I’ve done damage to my body since I’m living inhumanely. To top it off I now have osteoarthritis nearly everywhere. (Being bedbound for a year while fighting noxacusis has it consequences.) I also have progressive visual snow syndrome {VSS), which has gotten worse for a year straight now. Everything is grainy and almost looks like I’m peering through a drunken state of slow-motion. Within a few years I will be functionally blind with how quick the trailing has progressed. But of all my conditions it’s the noxacusis that’s the worst one. It is surely the one which will force me six feet under. Can’t leave my house, do anything. I’m sadly incompatible with life in every way.

My current reality is living in a room with pain all over my body, being essentially deaf but also tortured by sound with pain that comes as stabbing and burning sensations, instant and delayed (noxacusis), and being blind, more or less, because my eyes are so bad. I am unable to get help. Since I worsen so easily, I can’t even leave my house! I know my story is grim but it is what it is. Hopefully it’ll be read by someone and they can avoid the tragic mistakes I made.

It all started in November of 2023. I had just developed progressive VSS and was a ball of stress from dealing with its debilitating physical repercussions. Needing something to help me cope seemed like a good idea at the time. I had read horror stories about progressive trailing and couldn’t cope that I had it.

My doctor put me on propranolol, an anxiety med, which spiked my previously mild tinnitus to double in volume. I could hear it over the TV and desperately looked for relief anywhere. Due to the lack of education on auditory damage and the lack of transparency on medication side effects there is a huge world of snake oil claiming to help tinnitus (and other chronic illnesses with little to no treatments) that I fell victim to. Scammers prey on desperation.

With that said, I found a legitimate medical source claiming a video worked to reduce tinnitus. It was an ultra-high frequency neuromodulation video. It did help at first, as it completely wiped out my tinnitus for just about a minute. However, I quickly found myself raising both the volume and the length of time exposing was required to get the same effect, which was when I took to an online platform and asked its users Was this normal?, to which they overwhelmingly responded with yeses, that it was. (I had learned of this video from that same platform, as it was popular on there.)

Well I also turned to drinking to calm myself that night, and doing so had had the opposite effect of how it used to be. My tinnitus, which had never responded to alcohol, became piercingly loud. So I got desperate and played the video on full volume on my phone speaker up to my ear, thinking it could help me. In hindsight, it was extremely stupid, but I figured the worst that would happen is some hearing loss, and since it worked on my tinnitus I banked on the notion that it wouldn’t harm me.

But after :15 seconds it suddenly got louder and louder for the next few seconds before I had to turn it off. I instantly had ear fullness, dysacusis (where sounds were distorted), and loudness hyperacusis in my right ear (where everything sounded insanely loud). I researched and discovered hyperacusis that night, and saw that multiple people claimed to develop hyperacusis or noxacusis from this EXACT video. At first by quieting my tinnitus it was doing damage to my auditory system. I later realized that pure tones are very dangerous.

I also saw that I needed IT steroid injections ASAP to try to alleviate the damage. (Many people with hyperacusis and noxacusis have claimed that the steroid in question could help if taken quickly, based on THIS specific study. Click if you want to read it.) So I texted my cousin who’s an ENT and he said I should just go to an urgent care, but that I’d probably be okay either way. (Oh how wrong he was.) I had never experienced fullness and thought by chance that I had ruptured my eardrum. So I went to the ER.

The doctor insisted on irrigating my ear with water to remove wax, which was EXTREMELY loud and painful, something I had never experienced in my life. I didn’t let them do my (at the time) healthy ear and was upset when they wouldn’t give me steroids despite muffled and distorted hearing. When I came home I noticed that my symptoms were amplified. I couldn’t tolerate my spouse’s voice at normal volume and I’d suffered from my first major setback.

A few days later I scheduled an ENT appointment in the city. I had gotten a little better but was still seeking steroids. They only had appointments three hours apart, so I sat in the waiting room between them. I had only brought an earplug for my affected ear, but after an hour and a half or so, I noticed my healthy ear started to be sensitive to noise, too. The door slamming occasionally was becoming louder and louder. Nonetheless, I had my appointment and was again denied steroid injections and told NOT to overprotect my ears. To take in normal noises, even if they hurt. Horrible advice. Deadly, to be honest.

By the time I got home, both ears could only tolerate around 60 decibels, so I was in a ball crying when I couldn’t handle my spouse’s voice at all. For the next month I was stable homebound. After getting off the propranolol, my tinnitus went down and settled around 40 decibels, which was higher than before I’d taken it, but still much less than recent times.

I had kept seeking treatments, as I was getting impatient, and online I discovered that many were advocating gradual exposures to sound and positive emotions. So on New Year’s Eve I decided to listen to my favorite song at just below my loudness threshold. I cried tears of joy (it was awesome to hear the music after weeks of aural horrors), but at the end of the song I felt a shock in my ear and jaw. My loudness hyperacusis was instantly worse with things all sounding louder, and I also found a new condition had joined the torture bullpen: pain hyperacusis (also known as noxacusis, where a person feels significant pain to normal, everyday sounds, like aching, burning, and stabbing in their ears, sometimes delayed, sometimes instantaneous, sometimes both).

I sat there in panic and couldn’t believe the savagery, and it progressively worsened from seemingly nothing as the days followed. I discovered the updated oval and round window surgery (which some people say has helped this ear condition) and quickly scheduled a consultation with a doctor. In the meantime I rushed to get a CT scan as requested from the doctor, but I worsened from going there. At this point it had been three or four days since noxacusis had started and I had 45 decibel loudness discomfort levels or less (LDLs), which meant that sounds above 45 caused immense pain, a significant amount of noises in life.

My doctor appointment with the surgeon (a phone call) was about a week later, and I couldn’t even speak at that point, nor could I handle any sort of digital audio. He didn’t understand how bad I was and forced me to speak to him. I was told I was not a candidate and to wait two months, then check back. From just hearing a minute or two of audio and softly speaking with him while wearing earplugs and earmuffs for protection, it permanently worsened me. I had lost about 15 to 20 decibels in my LDLs from going to get the scan done, and chatting on the phone. I wish they’d been transparent with me from the start, as apparently I was too new for surgery and they knew that, so had that been communicated with me, I could’ve avoided the permanent worsening.

Since that day in January, my LDLs have not gone up at all, and for nine months I’ve been lying in a bed with earplugs and earmuffs for a minimum of 16 hours a day while using my phone and doing nothing else. In addition, I have been unable to care for myself. I can’t open wrappers, make food, or flush a toilet, even with protection. I have no family within 2,500 miles of me, and my spouse did all that she could during this unending nightmare.

My body began to degrade. First to go were my hands, then my neck and back. I seemed stable for a bit until I hurt my elbows overextending for something in August. As a side/stomach sleeper this was an issue for me, and I’d resorted to sleeping on my shoulders instead of my arms. Within days I had shoulder issues as I overloaded my lower body by overcompensating. Within a month or two my hips, knees, toes, and ankles all were showing signs of arthritis. I had blood work done at home with all inflammatory markers being negative. Now, no ortho will provide any treatment without an initial in-person consult, which I cannot do, obviously. I tried sleeping on my back for the last three months and after hours I finally fall asleep (if I’m even able to sleep), but later I wake up directly on my arms. It’s a no-win. My entire body hurts, and it always worsens my ears when I try to get help (permanently, too).

After a while I finally caved and asked a PT to come to my house for my neck-related issues. Well he cracked my neck and the sound was super loud–even in earplugs–and yet again it permanently worsened my condition. I went from being able to tolerate eating and quick showers to not being able to survive without worsening.

During all of this I’ve desperately pursued TVP Botox (another treatment that can potentially help noxacusis . . . click to read this research data that mentions how one person noted 100 percent improvement from an injection into the tensor veli palatini muscle) (Jahn, Kashiwagura, and Yousuf), the updated oval and round window surgery, and even surgical deafening, hoping to improve to severe at least instead of catastrophic. To be at a level where I could take care of myself and not worsen. That’s all I wanted from the beginning–to be stable in my quiet home. But doctors wouldn’t help me with the aforementioned things. One did give me a benzo/anxiety medication. Regrettably, I have tried things, including that and propranolol, and every medication worsened me with tinnitus or other side effects.

Nowadays I’m petrified of noises, as they’re all too loud and most importantly they’re horrifically painful, even if I can’t hear them all while wearing plugs and earmuffs. I am terrified of eating due to the inevitable setback I get no matter how soft the food is, or how slow I eat it. All my teeth are infected and it’s very painful to eat because of that. I’ve had three dentists come over to my house and there’s nothing they can do that won’t destroy my ears. (I need root canals or extractions and they’re too loud; noxacusis really makes it impossible to do stuff.) I’ve damaged my joints by doing simple tasks the last few months, and I’m afraid to move at all now. Not to mention that my tinnitus will worsen more when doing basic things, gaining tones throughout the day, reacting to the noises, and it doesn’t go away until I sleep; and then sometimes it doesn’t go away at all if I push the envelope, and really there isn’t an envelope at this point–I have no wiggle room. Plus, as if all these hells weren’t enough, my vision degrades daily, something akin to an acid trip.

I’m beyond tortured, and I can’t take this for much longer. It’s inhumane and my life is sitting in a dark, gloomy room, alone and isolated, with no sound or visual stimuli, while staring at the ceiling that’s moving due to VSS and hearing a cacophony of 20 sounds that endlessly rage in my head, and feeling pain to every sound I can’t avoid, like bodily things and stuff outside the window (birds, wind, nature’s turf). I’ve silently cried all day every day and can’t even swallow my spit because it’s too loud. As of my last worsening (my house creaking while I was eating), I can no longer silently cry, even, as occlusion from the sounds of my muscles contracting in protection give me horrid pain. That’s no life to live, folks. And there is nothing at all in the works that could fix any of these problems. I was nearly 100 percent healthy in October 2023. I took great care of myself but more or less one mistake ruined my entire life.

I want to hammer home that having noxacusis is mental torture, not because it’s a mental condition, no, but because it’s a physical condition that causes endless pain to every little noise, and then, in return, strips me of everything important and sacred in life. I call my significant other my spouse, but technically I’m not married. Now I fear I never will be. And all the things I’ll never do are bountiful and tragic. I’ll never have my own bachelor party, see my friends get married or progress in life, go on vacations, enjoy my dogs, work, use my hands, or ever be loved again like a person should be loved, where warmth is an essential. No dignity or humanness remains in my conundrum. And now, even if the ear issues went away, I’ve destroyed my body naively thinking noxacusis would improve on its own in silence. For me it didn’t, sadly, though I know it does for some.

If anyone got this far, I’m sorry if it’s traumatizing. I had to get this out, and quite frankly this is the only place that could even fathom the horror I’m going through.

It’s cruel how if I’d been given the right advice from the get-go (that there is no treatment for tinnitus), I wouldn’t even be here. Instead I found a video on a website that claimed to help it and it ruthlessly destroyed me. In addition, If doctors had warned me of the risks of medications, to carefully protect my ears because of sound intolerance, and then supplied a saving grace–a life-saving treatment, like IT steroids–then maybe (almost certainly) I would’ve had a life of meaning still ahead of me. But instead they were clueless and chose to gaslight.

If the medical community hadn’t been so stubborn, maybe they would’ve helped instead of hurt me, saving my life with a surgery or Botox. I’d sent them papers/studies from medical professionals, showing they sometimes helped hyperacusis or noxacusis. Despite that, I was still CBT’d to death, where they made it sound all mental.

I pray that someday the world will understand, will learn and help where help is needed, and offer it to save lives, preventing people from facing a lifetime of suffering. Or worse, having to pull the plug.

REFERENCES

[1]. Wilson, William R., Byl, Frederick M., Laird, Nan. The Efficacy of Steroids in the Treatment of Idiopathic Sudden Hearing Loss:A Double-blind Clinical Study. American Medical Association. 1 December 1980. https://jamanetwork.com/journals/jamaotolaryngology/article-abstract/608834

[2]. Jahn, Kelly N., Kashiwagura, Sean Takamoto, Yousuf, Muhammad Saad. Clinical phenotype and management of sound-induced pain: Insights from adults with pain hyperacusis. The Journal of Pain. 20 June 2024. https://www.medrxiv.org/content/10.1101/2024.06.19.24309185v1.full

Disclaimer:

*While Hyperacusis Central does NOT condone suicide, we’re presenting the fact that many with this condition feel pushed to end their lives. It is the nature of the beast, and for educational purposes it is very necessary to communicate the devastating fallout that it does have for some. If you or anyone you know is in need of assistance due to suicidal thoughts, call or text 988 for the Suicide and Crisis Lifeline. You can also chat with 988lifeline.org. Or text MHA to 741741 for the Crisis Text Line. Or, for a comprehensive list pertaining to different countries, visit the following link: https://en.m.wikipedia.org/wiki/List_of_suicide_crisis_lines.