People think that cancer is the worst thing that can happen to their health. Everyone has heard of cancer. Everyone fears cancer. They think it’s an awful, scary, painful disease — which it is. Sometimes it’s a death sentence.
But the damaged ear symptoms I struggle with are far worse than cancer. To me, noise is painful. Scratch that — ordinary sound, even if it isn’t especially loud, is painful.
There is no escape. Sound is everywhere.
A friend said to me, “Brother, you beat cancer. Hyperacusis should be a walk in the park.” The complete opposite is true. In comparison with Hyperacusis, cancer was a walk in the park.
I had lymphoma for just under a year, and it was gone after chemotherapy and radiation. The doctor said that the treatment had a good success rate. It worked for me, thank goodness.
But partway through the treatment, I developed tinnitus, and a few months after that I developed hyperacusis. This may be because of chemotherapy — many anticancer drugs are known for being ototoxic.
I had a great deal of noise exposure prior to lymphoma. I was in the music and restaurant business for nearly 20 years. At work there were constant yelling voices, clanking dishes and loud footsteps like large animals running around. It didn’t seem overly loud at the time, but I know that exposure for so many years contributed. In the music business I was always in close range of pounding speakers and music blasting in headphones.
My hyperacusis feels like my ears are filled with hot lava and dripping with burning acid. Every sound feels louder than it actually is, and almost any sound causes a very sharp pain in my ears and head. My tinnitus sounds like Christmas bells going off 24/7. I also get zaps in my left ear, and the sound of a staticky broken radio.
Nearly four years ago, when my ears started going bad, I could not figure out what was wrong. No doctor could, either.
I was moving from one residence to another, looking for enough quiet, and there was always something wrong — loud neighbors, loud roommates, loud construction. In five years, I moved 10 times, no joke.
In July of 2018 I attempted suicide. I drank a big bottle of alcohol in one go, swam out into the middle of Lake Ontario, and tried to drown myself. I lived in Toronto and could not get the quiet I needed, which is why I tried to take my life. Obviously, I failed, which is why you are reading this story today. Toronto was way too busy, with traffic and an ambulance with sirens driving by every few minutes.
I am still on the hunt for a sufficiently quiet residence, and it is the hardest task to accomplish on a disability budget. In Ontario, Canada, the government doesn’t provide enough financial help for people with disabilities to live comfortably. Living with hyperacusis is expensive, as the patient needs quiet, which usually means assorted kinds of soundproofing.
With cancer, suicide never crossed my mind. I was not isolated from society. I could go to restaurants with family and friends, grab a coffee whenever I wanted, perform music in clubs, play sports and do everything that healthy people do.
Now, because I cannot handle sound, I barely leave my home. I go for walks only at night when it’s quiet out, and I rush into the local shops quickly. I use ear protection when I must go out. I double up and wear ear plugs and over-the-head earmuffs, and still some noises cause me pain.
I needed new hobbies to replace my life after being diagnosed with hyperacusis. So I have taken up poetry and photography. They give me a sense of peace and tranquility.
I am grateful to be alive, but I am not grateful that I must live a tough life with hyperacusis and tinnitus. I talk online with others who have the condition, and I try to raise awareness to keep my mind in check and to keep busy throughout my days.
You are a hero!
Thanks to everyone for reading, much love. If you all would like to check out some of my own personal written material / awareness. The following link will take you to my blog – with articles on Hyperacusis, Tinnitus & Chronic Pain. Thank you!. https://davidishealing.blogspot.com
My God I know how difficult it can be to live with neighbors. “Peace and quiet” are the best things we need. I’m happy that you found a friend to share your hyperacusis 😉 Take care
I came across your article through a search on sound sensitivity. I can attest to how awful this us. I have been dealing with this for six months. In addition to the sound sensitivity, I have tinnitus, ear pressure, hearing loss, and episodes of vertigo. Diagnostic workup has not determined anything and my ENT indicated it could be Meneres, the cause if which is not fully understood and treatment options are limited. Like you, it has limited ne significantly. I avoid social situations and noisy settings. My connection with friends is.mostly textng.I also used to work out a couple hours a day and now my activity is limited to walks and light yoga and stretching. If I watch TV or listen to music, it is at a low volume but often I can’t tolerate it. I found myself drinking more, which i knew wasn’t good but it at least allowed me to feel good for a couple of hours. Fortunately my wife is supportive and my employer allows me to work from home. I started painting and some other artistic pursuits, which helps to settle things or at least divert my focus. While I don’t think of suicide, I completely understand not wanting to live. Fortunately, you dud not succeed in taking your.lige. I hope you continue to improve and find support in dealing with your condition. Thank you for sharing your experience. It was helpful to me.
bonjour david, j ai lu votre commentaire et l enfer de cette pathologie qui reduit nos vies et nos envies, .. suis atteint aussi tout a changé aussi pour moi en 2011 , je fais avec maintenant , enfin je limite beaucoup de choses et meme definitivement. je vous souhaite une bonnée 2023. ,bruno.
Thank you so much for putting this in writing for others to read. I’m i’m very glad your finding peace right now in your life.
I was just recently diagnosed with both hyperacusis and tinnitus, and have been dealing with it since November 2022. I was just getting used to the intermittent/chronic pain of IBS that was triggered from a really bad reaction to a broad spectrum antibiotics three years ago. So this hit me pretty hard.
I like peace and quiet anyways, and now I seek it out where ever can. But I don’t want to alienate myself since I deal with depression also. It’s helps knowing others are going through the same thing, as it gives me hope for finding someone who gets it in my life.
Funny thing is that I just started a second job last July to help with finances, and sure enough, it’s a cooking job in a restaurant. SO I get the clanging dishes that feel like someone smashing symbols next to my ears. Even normal conversations force me to put my plugs right back in. And the headaches are often right after that.
For now I’m wearing ear plugs and will be using over the ear protection as well, until I can find a new second job to help save money.
I came across your article through a search on sound sensitivity. I can attest to how awful this us. I have been dealing with this for six months. In addition to the sound sensitivity, I have tinnitus, ear pressure, hearing loss, and episodes of vertigo. Diagnostic workup has not determined anything and my ENT indicated it could be Meneres, the cause if which is not fully understood and treatment options are limited. Like you, it has limited ne significantly. I avoid social situations and noisy settings. My connection with friends is.mostly textng.I also used to work out a couple hours a day and now my activity is limited to walks and light yoga and stretching. If I watch TV or listen to music, it is at a low volume but often I can’t tolerate it. I found myself drinking more, which i knew wasn’t good but it at least allowed me to feel good for a couple of hours. Fortunately my wife is supportive and my employer allows me to work from home. I started painting and some other artistic pursuits, which helps to settle things or at least divert my focus. While I don’t think of suicide, I completely understand not wanting to live. Fortunately, you dud not succeed in taking your.lige. I hope you continue to improve and find support in dealing with your condition. Thank you for sharing your experience. It was helpful to me.
I didnt know there are others like me…
After 3 cancer surgeries, rounds of chemotherapy and radiation over 27 months suffer many side effects.
Loss of hearing, tinnitus, painful blocked ears, and hypersensitivity to sounds among them.