Susan Caswell used to bathe a couple times a day; used to brush her perfect teeth to keep them white and beautiful. But now she can’t do either task. The tiles, tub, and water flow are just too loud and torturous. The hard and glossy surfaces that creak and clack and echo, too. The shower door and bottle caps that click and snap abruptly. The water crashing on the floor and drain with all its gurgling. And just the act of lathering her hair and all her body parts! The bristles of a toothbrush — polishing with gentle moves — are still like thunder to her ears!

“Even touching my head is deafening! And earplugs and earmuffs don’t help. So I can’t wash and have this disgusting crud and flaking now. Six years of it! Can you imagine not bathing for six years? It’s hell! I can’t clean the junk off, as it worsens my ears and creates further torture that’s permanent. Rashes, dirt, things unspeakable. Smells that can’t be neutralized. Skin that’s like a desert, cracking with its dryness. I’m rotting like a corpse! Hell, even people in hospice can bathe in some way! I can’t! Can’t even do a simple bath; barely a wipe down. Can’t brush teeth or anything. And eating’s near impossible — can only do the soft stuff. Everything makes noise. It’s so inhumane.”

Susan — a 67-year-old in Stockton-on-Tees, England — went to many doctors, but none could ever help her. She got her diagnosis, the first time she had ever heard of such an ear anomaly. “Hyper-what?” she asked the doc. “Acusis,” he responded. This seismic sound intolerance, a rare and evil nightmare, which also comes with tinnitus for many of its sufferers — a phantom ringing in the ears — is often caused by sound abuse or toxic medications.

“I think ototoxic reactions are to blame, in my case. I took medications for blood pressure and thyroid for 25 years. And then I had cancer 45 years ago. Ovarian cancer where a nine pound tumor had burst with hair, teeth, and nails. I did brutal chemo and three meds. And then a doctor put me on zopiclone recently, a sleeping med, and that made things even more unbearable. My ear ringing has tripled in loudness. Yet I can’t sleep without the drug. My symptoms are too awful. So it seems like meds caused all of this. Sound-wise, I was just as careful with my ears as anyone. I didn’t abuse noise.”

Although a doctor worsened her with sleeping medication, she later saw another one that offered something else — the only treatment that exists for this disturbing illness: sound exposure therapy, which tries to build one’s tolerance through slow and measured noises, like pink or broadband static sounds that cover many frequencies. And yet it also worsened her! It caused what little tolerance she had to melt away! And never did it stabilize or come back to the old one; it was permanent. Click here to read a study which concludes the true effectiveness of sound therapy is unproven. (Kalsoom, Fackrell, El Nsouli, & Carter) And this study, too, where 18 percent of people with loudness hyperacusis worsened from sound therapy, and 28 percent of those with noxacusis, or pain hyperacusis, also worsened more. And plus they found that tinnitus had worsened for a lot of them. (Williams, Suzman, & Woynaroski)

Susan’s life was beautiful before her ears went belly-up. She always put her health first, getting lots of exercise and fresh air to rejuvenate. She added dancing to the mix and loved it as a hobby. For her career she helped the blind by boarding several guide dogs. She watched TV and sampled foods at many diverse restaurants, and called herself a “foodie.” She craved deep conversations. But sadly she lost all of this — something inconceivable to most who have a healthy life.

“So after years of worsenings which have no limitations, my daily routine consists of nothing more than lying in a bed and listening to tinnitus — piercing, vile, deafening! And then I feel major discomfort with every sound I hear. Birds outside my window. Rain and even wind. Traffic in the distance. These sounds are like a concert. Exposures spike my tinnitus and raise it up to louder planes. It doesn’t take much, shockingly. And when I push the envelope and worsen this condition, never does it dissipate, or bounce back to its baseline. It only worsens things. [Her ringing and sound tolerance will both decline in such events.]

I think it’s the hyperacusis that makes my tinnitus demonic and reactive to noises, meaning that its loudness and aggressiveness will raise with sound exposures, as I said before, and permanently, too. I don’t know if it’s the aural nerves or what, but something’s fried — the thing that allows a person to tolerate noise safely.

My tinnitus tones are awful: one that’s like a jet plane; one that’s violent hammering; a drill and high-pitched hissing sound; a deep and throbbing mower, too. They’re louder than a fire truck at all times of the day. It’s hell, I tell you . . . hell! I could’ve stood anything but this! Anything! I’d give all I own to have a liveable level of these conditions. I’ve long surpassed what I’d call a ‘reasonable level of torture.’ I haven’t been able to leave home for six years! It worsens me to do so. Can’t go outside at all.

I thought I had met my quota of suffering in life. I’ve been through so much, you know? A big back operation. A breast reduction I was over the moon with. And like I said, I had ovarian cancer 45 years ago. It robbed me of ever having children. That was pretty painful, but yes, I beat it, all right. Was never ill like nowadays.

Cancer was easy compared to this, not just the treatment but also the quality-of-life. I could still see people, bathe and live some sort of life. With this I can’t do anything. I’ve lost all that and then some. Can barely see my lifelong partner, for Pete’s sake! He and I have been together for 44 years, but I can’t talk to people or use my voice now!

This you cannot beat. You win or die with cancer. With this you only die. No, you don’t die mortally, but you die every other way — something even worse. You’re stuck inside your room or house, hiding from these wretched sounds, and still you’re struck with torture, too, from tinnitus and noises since they can’t be avoided; they’re always loud and everywhere!

Stop and think of everything you do in daily life, even tiny, simple things, and soon you’ll quickly realize that sound’s a part of all of them. Subtract those things and where’s your life? The answer? You don’t have one. And then you get no sympathy. With cancer I was powerful. Treated like a hero. With this I’m labeled bloody mad, ignored or told that other things like cancer are the worst, even though they really aren’t — they weren’t for me, at least. I’m speaking from experience.

When people cannot understand they mock or just invalidate. It’s human nature, sadly. We fear what we can’t understand, and notions that a demon thing can swallow you unmercifully are seen as all but probable. You’re crazy, lying, misinformed. But sick? Disabled? Not at all. It’s cruel as cruel can really be.

This is why we need a cure. Or treatments, at the very least. For those like me, lost terribly, neglected and forgotten.”

Author: J. D. Rider

References

Kalsoom, N.; Fackrell, K.; El Nsouli, D.; Carter, H. Current Recommendations for the Use of Sound Therapy in Adults with Hyperacusis: A Scoping Review. Brain Sci. 2024, 14, 797. https://doi.org/10.3390/brainsci14080797

Williams, Z. J., Suzman, E., Woynaroski, T. G. A Phenotypic Comparison of Loudness and Pain Hyperacusis: Symptoms, Comorbidity, and Associated Features in a Multinational Patient Registry. American Journal of Audiology. 2021. www.researchgate.net/publication/349107176_A_Phenotypic_Comparison_of_Loudness_and_Pain_Hyperacusis_Symptoms_Comorbidity_and_Associated_Features_in_a_Multinational_Patient_Registry