Morbid condition, hyperacusis, prohibits woman from bathing for 6 years and counting

by | Mar 28, 2024 | Awareness, Patient Stories | 0 comments

By J. D. Rider

Susan Caswell used to bathe a couple times a day. Showers were for waking up and baths were for the evenings. But now she hasn’t done the deed for 6 years of her life. The tiles, tub, and water flow, the hard and glossy surfaces, the clicking door and bottle caps, and squeezing soap, conditioner, and shampoo through the bottles, are just too loud for her. The water crashing on the floor, the echoes and acoustics, and just the act of using hands to lather hair and body parts, bring torture to her ears.

“So now I have crud and disgusting flaking that I can’t deal with. Can’t clean it off since it worsens my ears and creates further torture that’s permanent. Rashes, dirt, things unspeakable. Smells that can’t be neutralized. I’m rotting like a corpse. Heck, even people in hospice can bathe in some way!”

Susan, now a 67-year-old in Stockton-on-Tees, England, was always putting health first, getting lots of exercise and fresh air in her life. She even took up dancing. For her career she helped the blind by boarding several guide dogs. She loved TV and eating out at different restaurants. She loved deep conversations, and hanging out with people. Especially her husband. But sadly she lost all of this.

“I think ototoxic reactions are to blame. I took medications for blood pressure and thyroid for 25 years. For a long time they never caused a problem, or so I thought. But then I had cancer 45 years ago, too. Ovarian cancer where a 9 pound tumor had burst with hair, teeth, and nails. And I did brutal chemo and 3 meds at the time. And then a doctor put me on zopiclone recently, a sleeping med, and that made things even more unbearable. My tinnitus has tripled. But I can’t sleep without it. My symptoms are too torturous. So it seems like meds caused all of this. Sound-wise, I was just as careful with my ears as anyone in life. Not a lot of loud sound.

But now I just lie in bed and listen to deafening tinnitus, and feel pain with every sound, like knives into the eardrums, or lava burning them. Birds outside my window. Rain and even wind. Traffic in the distance. These sounds are like a jet plane. And then my hellish tinnitus gets louder than before, reacting to the sounds, but never does it dissipate when too much sound is taken in. It worsens things for good, my ringing and sound tolerance. My tinnitus tones are awful: one that’s like a jet, one with hammering, a drill, and high-pitched hissing; a deep and throbbing mower. They’re louder than a firetruck at all times of the day. It’s hell, I tell you – hell! To be honest, I could’ve stood anything but this! Anything!

I thought I had met my quota of suffering. Like I said, I had ovarian cancer 45 years ago. It robbed me of ever having children. It was pretty painful, but yes, I beat it, all right. I 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, live a life. With this I can’t do anything. I’ve lost all that and more. 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. You don’t die mortally. You just die every other way, something even worse. You’re stuck inside your room or house, hiding from all sounds, and then you’re struck with torture, too, from tinnitus and sounds, since sounds can’t be avoided, really; they’re everywhere in life. And plus you get no sympathy. With cancer I was powerful. Treated like a hero. With this I’m just ignored, even though it’s far worse. No one understands.

But everything’s affected. Stop and think of everything you do in daily life, even tiny stuff, and soon you’ll quickly realize that sound’s a part of all of it. Subtract those things and where’s your life? The answer? You don’t have one. That’s the scary truth. And that’s where I am at.”

When symptoms started happening she saw so many doctors, but none could ever help her. As she said above, one worsened her condition with sleeping medication. And with another doctor, she tried the one thing offered: sound exposure therapy, which tries to build sound tolerance. 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.

“This is such a ruthless condition. It’s the most inhumane thing I’ve ever heard of. This is why we need treatments or a cure. Something for people like me. We’re lost, neglected, forgotten.”


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