Full Mental Adjustment: Making Friends With My Tinnitus

By Steve DiCesare

I’ve had tinnitus my entire life. I’m in my early 50s now. I started noticing my hearing loss around age 10, and by age 20, I was diagnosed with a severe to profound hearing loss.

I had been a recording and touring musician. Somehow I was able to write, record, and perform despite the hearing loss and constant tinnitus. I never used hearing aids as I had enough hearing in my good, left ear to make do.

The tinnitus was a high-pitched hissing sound in both ears at a volume of about 3 out of 10—meaning that in any given sound situation, 30 percent of what I was hearing was high-pitched hissing. As my hearing gradually declined, the tinnitus remained and seemed louder because I wasn’t hearing other sounds.

Illustration by Ian Miller.

Tinnitus became a part of me—my friend, always there when I looked for it, a reminder that life is indeed a challenge. Sometimes I would wonder if the tinnitus was still there, and then once I wondered, it would torment me—a reminder that yes, it definitely was! Tinnitus became a consistent, persistent, and dependable presence.

Along with a hearing loss, I have a noise sensitivity problem, hyperacusis. Most loud noises throw me for a little brain zap. It feels physical, like someone is poking me in the inner ear. Sharp noises such as dishes clanging, electric tools, kids banging on stuff, babies screaming, motorcycles—they all feel like an electric shocker to the head.

My friends and family and I had long relied on a combination of signing, speaking, yelling, writing, and acting things out. Call it “total communication.”

Still, as my hearing declined—to the point where my wife Tracey and I couldn’t converse while sitting next to each other on the couch in a quiet house—I decided to begin the steps necessary to finally get a cochlear implant in my worse, right ear. I was 43.

Severe hearing loss plus tinnitus is not a good combination. The less hearing you have means the less distraction from the tinnitus. All that you hear are the cracks, hissing, creaks, waves, and trains—all day and night long.

The Flood

Part of why the tinnitus became so unbearable was that it started presenting differently.

The flood of new sounds introduced itself to me one night by way of a group of angels. I awoke to a choir of what sounded like harmonizing angel voices—spacy, sustained, synthesized. Sometimes I heard individual voices, muddied sounds like the parents in Charlie Brown cartoons. I started calling them the Radio Broadcast. I discovered this is a diagnosed condition called nonpsychotic auditory hallucinations. Nonpsychotic!

The second part of the tinnitus flood is what I call Wind Through the Cave in a Storm. It’s like a howling sound or a washout wave rolling in and out of my head. This one is a little scary because it can get pretty fierce, like a tsunami taking out a city block or stormy waves crashing against the lighthouse—and like I should sit down right this second or hold onto the wall.

Illustrations depicting the distress of tinnitus by Ian Miller.

The third I call Trains Come-a-Roaring. This is either a clicking or rhythmic tone that sounds like an engine, fast and repetitive rotations that my musical mind labels a 16th note. The sound of a train running over a rickety section of tracks kind of nails it. I believe this to be some sort of “hearing” of bodily functions, such as the blood running through the veins in my ear.

The last of the tinnitus flood is what I call Coach’s Whistle. This is a positional noise that happens when I tilt my head to the right. It’s the most distinct as well as the clearest and loudest of the whole flood. But unlike the others, it has an on/off switch. The whistle blows steady and clear, but stops when I stop tilting my head.

My lifelong tinnitus jacked up to about a 5 out of 10. Some days these sounds were on the right side of my head, one or two of them on the left side, sometimes both sides, all of them changing levels and coming and going.

A Lot of Doctors

I saw 25 different doctors and practitioners of alternative medicine over the course of a year in efforts to understand and hopefully reverse this new tinnitus flood. I hadn’t seen a doctor in about 15 years before that, other than my primary care physician.

Now, I know there are people out there who are really suffering. I realize how lucky I am. But I forget that so quickly on days when the tinnitus flood is raging. That year, I was alternating between hiding in my basement and coming upstairs and yelling at everyone, angry and irritated and just trudging through the day.

Each professional I saw has a different opinion and solution.

“Antidepressants,” the M.D. says.

“Herbal drops,” the naturopath says.

“Misaligned hips, possibly causing tension in your spine and neck area,” the chiropractor says.

“Twisted neck muscles,” the physical therapist says.

“A kidney yin deficiency, probably with some nerve miscommunication, and we could also work on inflammation and overall health,” the acupuncturist says.

“No, not everybody’s neck and shoulders feel sore all the time, or are this tight,” the massage therapist says.

“A misaligned jaw with temporomandibular joint dysfunction,” the neuromuscular dental professional says.

“A pollen allergy, but I don’t think these allergies are causing your tinnitus symptoms,” the allergist says.

“You should tell Tracey that more bedroom time is the only thing that helps your symptoms,” my buddy Mark says.

Jokes aside, I spent a year in despair, researching and trying all the various healing techniques recommended by these specialists. I kept logs of the different things I ate or drank, any changes in physical activity, and how weather fluctuations affected my tinnitus. All in attempts to try to “heal” the tinnitus.

Telling myself, Hey, that was a rough run, but you had to find out. You needed to do the work and see for yourself.

None of my efforts or actions to diminish my tinnitus seemed to make any sense or improve my symptoms. Nothing helped until I finally fully accepted the situation.

Acceptance allowed me to let go and surrender. Total acceptance allowed me to open my mind to new ideas and thoughts about the tinnitus: This is it. This is how it’s going to be. Deal with it. You are tougher than you think. You can figure something out.

Pink Noise

I remembered something the audiologist said to me once. She said if we give the brain something to focus on, something else to hear, the tinnitus could start to fade into the background. And I knew my tinnitus became louder as my hearing worsened.

One night I was doing some work on my laptop in the living room while my wife was in the kitchen doing the dishes. My hyperacusis makes the clanging and clacking of cleaning up feel excruciatingly loud.

Pot banging sounds would trigger fight or flight responses and elevate my blood pressure and anxiety, which in turn would elevate the tinnitus noise, which in turn would elevate my anxiety and blood pressure, and on and on. In the living room, flinching at loud noises from the kitchen, I searched YouTube for sound maskers. I learned about the many masking noise colors, each with a different frequency mix. I discovered that “pink noise” has been found to give relief as a masker for people with hyperacusis. Listening and watching the accompanying video of swirling pink cotton candy, I found that I suddenly stopped noticing the noise from the dishes clanging in the sink. I could focus on the pink noise and the kitchen noises faded to the background. I started experimenting with pink noise in every situation that made me uncomfortable. Just jogging on gravel would give me anxiety, so I had started jogging on grass or running circles around a field. I downloaded the pink noise loop onto my iPhone and wore it on my shoulder before running on the gravel trail. It worked!

In Search of Stimuli

I could see that I needed to better hear actual sounds to help distract my brain from the tinnitus noises. I had surgery for the cochlear implant. After activation, it took my never-amplified brain some time to adjust. At first, it was hard to go to work and do other crazy things, like talk to people.

I was told to try to block out the noise and focus on what the real sounds are, and the brain would put it together. There are programs to work through, training the brain to the new sounds, which I worked on very diligently.

Patterns started to form. There were a bunch of good days and a bunch of bad days. Good days were approaching the point where I wasn’t thinking about the new sounds and being stimulated and distracted by them every second of the whole day. On bad days the sound stimuli I received through the implant would change from a comfortable level to a more severe intensity, triggering my hyperacusis.

Eventually the good days outnumbered the bad, as my brain adjusted to hearing and processing sounds.

Hearing through my implant gives my brain something consistent to focus on rather than the shrieking, buzzing, and ringing tinnitus, or the hyperacusis, the perceived shocks of random sounds that pop up through the day.

And the pink noise loop on my phone has become my go-to strategy for coping with both conditions. It’s like a nice big fluffy pink cloud blanket, mellowing out the sounds.

Changing the way Steve looks at tinnitus has been a full mental adjustment. Illustration by Ian Miller.

Glass Half Full

That’s not all. I have also been changing the way I look at the tinnitus. It’s a full mental adjustment.

I began to isolate the tinnitus flood sounds and started to work on mentally blocking them out. I create “rooms” in my head and put each noise in a room and close the door. Of course, at night, when I’m sleeping, the noises sneak out to cause havoc in my dreams. They run rampant and have a keg party. I find that early every morning, I need to massage my head and neck and work on breathing and blood flow. I realize this is a form of meditation, and I think this is something you need to come to on your own.

When Tracey asks what tinnitus noises I have today, I sometimes find myself wondering which. I can go to that room, knock on the door, and visit with the noise. It would actually seem to get louder! Then I’d leave the room, close a publication of hearing health foundation spring 2021 13 living with tinnitus the door again, block it out to some degree, and focus on what I can hear or see or feel as a distraction. It’s working.

I could see that I needed to turn the negative connotations associated with my symptoms into something more positive. It has fundamentally changed how I deal with and react to them. Radio Broadcast is now called Communication From My Ancestors. Trains Come-a-Roaring is now referred to as Funky Bass Line. Wind Through the Cave in a Storm is now labeled Healing Spring Rain.

And the Coach’s Whistle is now a reminder of how lucky I am and how great life is. I call that one the Game Show Winning Buzzer. I go into the Game Show room, move my neck to the right and—buzz! I’m reminded that I’m winning! Buzz! I’m lucky! Buzz! I will get through this! Buzz! I can do this!

I know that I can, and hope you can, too

This story, which originally appeared in the Spring 2021 edition of Hearing Health magazine, is adapted from “Dear Steve, You’re Going Deaf,” by Steve DiCesare. A Colorado resident, he teaches special education, ASL, and metalsmithing/jewelry. For more, see youregoingdeaf.com. Ian Miller is a cartoonist, illustrator, and musician in Florida. For more, see ianjmiller.com.

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