CBT (cognitive behavioral therapy) is one of the leading psychological treatments espoused by clinicians and audiologists for the hearing condition noxacusis. That being said, when crossing this condition at a catastrophic level, I found I was surprised and saddened to assess, as a seasoned counselor of CBT myself, that it is NOT effective for combating the destruction that this cruel condition physically puts upon my life.

By Charles Myers and J. D. Rider

My name is Charles Myers and I’m 27 years old, living in California with my parents because I’m so disabled I can’t live on my own. I need their help with sound-related tasks to sustain my life to some degree: things like cooking, drawing a bath, etc. Without their help I would be in big, big trouble and couldn’t survive. I have crippling noxacusis (pain hyperacusis), mild loudness hyperacusis, mild reactive tinnitus, and mild tonic tensor tympani syndrome (TTTS)–spasms in the middle ear that cause fullness.

The Symptoms I’ve Endured

At the moment my right ear’s noxacusis is the thing that keeps me homebound. Even though my left ear doesn’t hurt nowadays (I had some burning in it for a period of two months, back when all these hells collided with my former life in mid-December last year, 2024), I can’t expose myself to sounds because I still get pain in that ear. Even in double protection I do–earplugs and earmuffs. I’ve been whispering for the past four months because of that.

My pain is instant once exposed to sounds–pinches and stabs in my ear. It gets worse when I continue to expose because my tolerances dip, and my ear gets really achy. My noxacusis physically mimics nerve pain, or something running deep. It also runs to my right palate and deep within my nose. Those sensations feel like pinches as well. I’m mostly bedridden, and usually only get up for water, food, or bathroom visits.

If I use double protection I can exist in silence, more or less. I get ear pain even from distant cars passing by, brushing my teeth and flossing, walking around at speeds considered normal (I can only tiptoe now), or playing with my hair, scratching my head or face, or opening a door the normal way instead of slow, or lying down or getting up as moving bedsheets scream when I collide with them. Yes, they’re screams to me. Sounds are screams from Hell. Plus the neighbors mowing grass. That too. Everything. Nightmares I contend with in a neverending loop (even far away, those people cutting cause me pain that really, really hurts: low-frequency vibrations). All these things attack. I often bear the torture since they’re causing pain in double pro and there’s no place to hide. This cycle, inescapable, is too much to endure.

How This all Began and Progressed

My former job had ties into the origins of my ear problems. Back in 2023, mild noxacusis came. I was a social worker who had a company car for commuting to my clients’ homes. To pass the time I’d listen to music during these commutes for two to three hours every day, and blasted it pretty loudly. Well the problem was that this specific car had a speaker that was pointed toward my right ear, which I didn’t know was dangerous until it was too late. With time it induced my noxacusis. At first I didn’t think much of it because I only got mild pain when listening to loud music, so it wasn’t that intrusive. My loudness discomfort levels remained normal for the most part.

I stayed that way up until October 2024, when I noticed I’d have to keep my car music lower and lower and lower, like my tolerance was slipping more and more. During that time I also noticed that my earphones would create a very itchy feeling in my right ear. Slight irritation. That continued until I went to a loud restaurant for a work event. Big mistake. Leaving that place I noticed everything sounded so loud; my ears were so sensitive. I had crossed the line. Big time.

By December the crash and burn started. My loudness hyperacusis was extreme. I took time off work and saw an audiologist who told me not to protect from sounds in everyday environments. I did as instructed but unfortunately it ended up making my noxacusis multiply to crippling. I became homebound on the first week of 2025. What a way to start the year. At the time of the appointment, my pain hyperacusis was mild and the focus was on loudness hyperacusis. Perhaps if it had been the other way around, the audiologist would have advised differently. Maybe. Maybe not. It’s hard to know for sure, because usually knowledge about these conditions is sparse or missing altogether.

It’s a shame that there is little known about these conditions in the medical field, making it difficult to find treatments and the best advice. I think it’s important to highlight how there’s barely any information out there about noxacusis, especially. I also think it’s important to find a specialist with knowledge in this field, if you can, which I know can be difficult based on online reports from other individuals with the same condition. It seems like the consensus reached is that there’s no standardized treatments in place, and that a good portion of doctors do not know how to treat this condition.

Improvements I’ve Made

I’ve gotten slightly better since the onset of these nightmares, but still I’m so severe. As I mentioned before, my left ear did improve. My TTTS was frequent before but that has died down, and now only happens when I yawn. Putting earplugs in my right ear used to cause a lot of pain (that halted last month, and only causes minor irritation at this present time, thankfully). My loudness hyperacusis was severe initially, with every little decibel an amplified experience–discomfort to the max. That has reduced to a mild or moderate level in my left ear (my good ear). I don’t know how bad my loudness hyperacusis is in my right ear, as I have a lot of pain in that ear and can’t expose it to any sounds. I’m usually in double protection all day, except when I sleep (I only use earplugs). My tinnitus has started to reduce but it fluctuates throughout the day depending on my movement and sound exposure. It’s mild compared to what it was when it started in December–moderate. I’m thankful for these improvements but they’re still not enough to grant me an adequate quality of life.

Protection has been the sole reason for any slight improvements I’ve seen. Every time I do noise exposure my tolerance starts to drop and my tinnitus increases, so I know that TRT or sound therapy isn’t a fit for me. Pushing exposures further, in hopes that such courage will lend itself to that “no pain, no gain” type of promise many folks espouse, has thus far only yielded deep regrets, because I’ve found it permanently worsened me.

At my worst, which was from January to March 2025, I also got chest pains on my right side. They ran all the way down to my right hand. My eardrum also felt like it was getting poked or punctured by tons of small needles. I had burning pain every day, as if my ear had an open wound in it. Almost like my eardrum didn’t exist at all, and was instead the macabre result of cut-open flesh from an injury. Thankfully these symptoms improved.

What I’ve Lost to These Conditions

Everything. These nightmares have affected every aspect of my life, starting with my great career. I used to work with children in the foster care system before becoming a counselor. When these ear disasters hit I was two weeks away from completing my masters in Marriage Family Child Counseling. I still got my degree but had to leave my job as a drug and alcohol counselor for adults due to my pain severity. It’s a shame because I was so close to transferring to a new position as a counselor for foster care children. Before I lost my life I even had dreams of becoming a part-time professor at a local community college. Those dreams are gone now, and all I can hope for is to stay alive at this point. I wouldn’t even be able to have a work-from-home job, because moving too much causes pain and irritation. I just don’t see how this is livable long term. I try to tell myself it is, but feel like I’m lying. Or just in self-denial. No one wants to accept the worst, you know? It’s human nature to fight, even in the face of almost certain defeat.

In regards to my hobbies, I had to drop them all. I used to play tennis, go on bike rides, jogs, and spend weekends traveling to different parts of California. It’s so hard to adjust to this. Going from being very active to bedridden is beyond soul crushing. I mean, I can’t even spend time in my front yard anymore! (I used to go out there at night for 10 to 30 minutes. I no longer do because a setback could occur, which happened in the yard before.) I can’t talk normal. Can’t spend time with friends, who are so supportive and yet it’s unfortunate I can’t be around them. They’ve visited before, although I’ve found it’s far too risky due to all the pain that comes with it. They do their best to be silent but I think even they–as loving and supportive as they are–fail to grasp that my pain is set off by the smallest of sounds.

My parents do their best to accommodate me. I think they also recognize how serious this is, because I’d never willingly quit my job, hobbies, and social life to lie in bed all day.

Why Coping Hasn’t Worked for Me

Well, losing everything ties into that as well. Although I have an extensive background in cognitive behavioral therapy and other coping strategies, and was a seasoned counselor, all those mechanisms I had learned went down the drain with this, because having noxacusis at such a disabling level is akin to being locked up, stripped of everything, and warring with a constant onslaught of physical and mental torture. You’re a prisoner to sound and have to fight a war on sound’s battlefield, and it greatly (impossibly) outnumbers you. You’re taking hits/mortars/strikes all the time, forever and ever and ever, and all you can do is hide. You certainly can’t live. Hiding isn’t living.

My coping resources are definitely not enough. This condition is too intrusive for simple coping skills to work. I think If I were mild, I’d be able to manage it much better with coping skills. The only thing that keeps me going, coping-wise, is the potential for surgery to help (maybe the oval and round window surgery, or a TTTS surgery, removing the muscle, or getting better naturally–that’s a possibility). I’m very open with my mental health and my friends and family know that this way of living is not enough for me. I loved my life and don’t want to die, but definitely do not see myself doing this long term. This condition is just too crippling when severe.

It’s also hard to cope because what makes noxacusis so uniquely terrible is the person who has it can’t escape from sound no matter where they’re at. Sound is everywhere, so it’s impossible to rest their ears no matter how persistent their efforts are to do so. With the most severe cases, even when wearing protection the sounds penetrate. Unlike my leg injury that was remedied by stopping physical activity for six months, my ears are always on the go. I can’t turn them off, making it impossible to rest oftentimes, and try for a recovery. Unlike my leg injury, where I had total control over how much I would use it, I can’t do that with my ears and sounds. I have no control over who makes noise. This condition worsens with sounds above the tolerable threshold so quickly. It’s scary to think where the bottom lies, and it seems it can always sink lower, as if there isn’t a bottom at all.

I’ve been injured many times before (in my lower back, the aforementioned leg injury–a popped out knee, torn patella), but this injury isn’t like the rest of them. The concept that you can’t just muscle through it fails to resonate with people. That’s partly why they can’t understand, and again why coping doesn’t work so well. People think that medically everything is solvable–the things that don’t kill you. That isn’t always true. And more or less severe noxacusis does kill you, makes you nonexistent, makes you sit in limbo, a place where death is lurking; you’re on its morbid doorstep. You’re really not alive.

Looking Towards the Future

I briefly alluded to my surgical hopes for noxacusis and TTTS. I’m looking into the oval and round window surgery and/or even removing the tensor tympani muscle. My ear aches or pains feel like a muscle injury. I’m hoping one of those surgeries can help, or at least reduce the strain on my middle ear to allow some recovery. It’s a shot in the dark, of course, as most things are with these conditions. I haven’t tried any treatments. I’m worried taking meds would increase my tinnitus. That happens to a lot of folks. I wouldn’t be able to handle loud tinnitus, since I’m in double protection most of the day.

There’s a specialist out in Los Angeles who does the oval and round window surgery, and I want to travel there for a consultation. Unfortunately I can’t make the journey in my current condition. I’m going to try to go in the next three months. It’s a four hour drive and I’m going to break it down into multiple weeks to limit the almost-guaranteed setback I’ll get. That’s the thing with this: when you’re this severe, you can’t seek treatment, even–you’re too disabled to do so. Well I am, anyway. And many others are.

I want to leave a legacy of documentation behind. My goal in sharing my story is multifaceted. Yes, part of me wants others to learn about these rare ear conditions. I think it makes it easier for our community to educate friends and family members by having them read these stories. Another part of me also wants to help support the community by putting myself out there and pursuing surgeries and other available treatment options. It doesn’t seem like a lot of people have pursued surgery for noxacusis, so I want to help with that. And lastly, a part of me wants to leave something behind. I want to continue living so bad, but just can’t imagine doing this long term. I refuse to do this long term. I cry every day and refuse to live out 40 or 50 years in a room with double ear protection, wasting away and getting pummeled by sounds. With my story out there, I can perhaps leave a reminder that I once existed, once was tortured, didn’t lose my life in vain, and maybe–just maybe–someone will read what I wrote and get something from it which prevents their journey from worsening. That’s the scary truth: this stuff is unforgiving. And if my words can even help a single person save their life I’ve done my job, I feel. Everyone deserves a chance, a hopeful, happy future, but sadly with conflicting info whirling on the Net, from health providers, too, pertaining to these underfunded, hard-to-fathom, rare conditions getting little research, folks are often misled, sent down dangerous pathways, which spells disaster for the patients seeking resolutions. Look at yours truly–it happened in my life, and I can only hope I’ll get a second chance.

*AI (Artificial Intelligence) wasn’t used to write or edit this story.

DISCLAIMER

In the midst of extreme hyperacusis, that urge to want to give up is common. Very common. If you’re feeling such despair, enduring an upheaval from this physical condition, you’re not alone and we do understand. 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: click HERE. Help, if sought upon, is there for your consolement.

*The subject of this story requested his name be changed for privacy.