Living With Tinnitus Full Mental Adjustment. Steve DiCesare. Tinnitus and Hyperacusis Overview

Full Mental Adjustment

Making friends with my tinnitus. By Steve DiCesare, with illustrations by Ian Miller I’ve had tinnitus my entire life. I’m in my early 50s now. I I discovered this is a diagnosed condition called started noticing my hearing loss around age 10, and by age nonpsychotic auditory hallucinations. Nonpsychotic! 20, I was diagnosed with a severe to profound hearing loss. The second part of the tinnitus flood is what I call Wind I had been a recording and touring musician. Somehow Through the Cave in a Storm. It’s like a howling sound or I was able to write, record, and perform despite the hearing a washout wave rolling in and out of my head. This one is loss and constant tinnitus. I never used hearing aids as I a little scary because it can get pretty fierce, like a tsunami had enough hearing in my good, left ear to make do. taking out a city block or stormy waves crashing against

The tinnitus was a high-pitched hissing sound in the lighthouse—and like I should sit down right this second both ears at a volume of about 3 out of 10—meaning that or hold onto the wall. in any given sound situation, 30 percent of what I was The third I call Trains Come-a-Roaring. This is either a hearing was high-pitched hissing. As my hearing gradually clicking or rhythmic tone that sounds like an engine, fast declined, the tinnitus remained and seemed louder and repetitive rotations that my musical mind labels a 16th because I wasn’t hearing other sounds. note. The sound of a train running over a rickety section

Tinnitus became a part of me—my friend, always of tracks kind of nails it. I believe this to be some sort of there when I looked for it, a reminder that life is indeed a “hearing” of bodily functions, such as the blood running challenge. Sometimes I would wonder if the tinnitus was through the veins in my ear. still there, and then once I wondered, it would torment The last of the tinnitus flood is what I call Coach’s me—a reminder that yes, it definitely was! Whistle. This is a positional noise that happens when I

Tinnitus became a consistent, persistent, and tilt my head to the right. It’s the most distinct as well as dependable presence. the clearest and loudest of the whole flood. But unlike the

Along with a hearing loss, I have a noise sensitivity others, it has an on/off switch. The whistle blows steady problem, hyperacusis. Most loud noises throw me and clear, but stops when I stop tilting my head. for a little brain zap. It feels physical, like someone is My lifelong tinnitus jacked up to about a 5 out of 10. poking me in the inner ear. Sharp noises such as dishes Some days these sounds were on the right side of my head, clanging, electric tools, kids banging on stuff, babies one or two of them on the left side, sometimes both sides, screaming, motorcycles—they all feel like an electric all of them changing levels and coming and going. shocker to the head.

My friends and family and I had long relied on a A Lot of Doctors combination of signing, speaking, yelling, writing, and I saw 25 different doctors and practitioners of alternative acting things out. Call it “total communication.” medicine over the course of a year in efforts to understand

Still, as my hearing declined—to the point where my and hopefully reverse this new tinnitus flood. I hadn’t wife Tracey and I couldn’t converse while sitting next to seen a doctor in about 15 years before that, other than my each other on the couch in a quiet house—I decided to primary care physician. begin the steps necessary to finally get a cochlear implant Now, I know there are people out there who are really in my worse, right ear. I was 43. suffering. I realize how lucky I am. But I forget that so

Severe hearing loss plus tinnitus is not a good quickly on days when the tinnitus flood is raging. That combination. The less hearing you have means the year, I was alternating between hiding in my basement less distraction from the tinnitus. All that you hear are and coming upstairs and yelling at everyone, angry and the cracks, hissing, creaks, waves, and trains—all day irritated and just trudging through the day. and night long. Each professional I saw has a different opinion and solution. “Antidepressants,” the M.D. says. The Flood “Herbal drops,” the naturopath says. Part of why the tinnitus became so unbearable was that it “Misaligned hips, possibly causing tension in your started presenting differently. spine and neck area,” the chiropractor says. The flood of new sounds introduced itself to me one “Twisted neck muscles,” the physical therapist says. night by way of a group of angels. I awoke to a choir of “A kidney yin deficiency, probably with some what sounded like harmonizing angel voices—spacy, nerve miscommunication, and we could also work on sustained, synthesized. Sometimes I heard individual inflammation and overall health,” the acupuncturist says. voices, muddied sounds like the parents in Charlie Brown “No, not everybody’s neck and shoulders feel sore all the cartoons. I started calling them the Radio Broadcast. time, or are this tight,” the massage therapist says.

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!

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.

“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.

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.

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

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 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.

Share your story: Tell us your hearing loss journey at editor@hhf.org.

Tinnitus and Hyperacusis

Tinnitus comes from the Latin verb “tinnire,” to ring. Hyperacusis literally means excess hearing, from the Greek “hyper,” over, and “akousis,” hearing.

Tinnitus is defined as the experience of hearing sound without an external, acoustic source. While it is commonly referred to as “ringing in the ears,” tinnitus can also be described as buzzing, hissing, whistling, swooshing, and clicking.

Tinnitus can be an acute (temporary) condition or a chronic (ongoing) health concern. Brief, spontaneous tinnitus, lasting seconds to minutes, is a nearly universal sensation. Acute tinnitus, lasting minutes to hours, occurs routinely after excessive noise exposure that is intense or prolonged enough to cause temporary injury to the ear. Chronic tinnitus is described as lasting for over three months.

The U.S. Centers for Disease Control and Prevention estimates that nearly 15 percent of Americans—more than 50 million people—experience some form of tinnitus. Of this number, roughly 20 million have chronic tinnitus, and two million have debilitating cases.

“In almost all cases, tinnitus is caused by the brain’s reaction to a loss of hearing. This reduces the auditory or sound input to the brain. The brain doesn’t like that and will create a new sensation to take the place of what it had been expecting,” wrote the late Robert Dobie, M.D., in the seminal 2004 book, “Tinnitus: Theory and Management,” edited by James B. Snow Jr., M.D.

Tinnitus is a symptom, not a disease itself, so identifying and correcting any underlying condition associated with it may help reduce it.

Hyperacusis is distinct from tinnitus but the conditions often overlap. Hyperacusis causes one to experience decreased sound tolerance or increased sensitivity to noise. It’s typically a condition that someone is not born with but develops, either gradually or suddenly.

About 85 percent of hyperacusis patients also have tinnitus, and 30 to 40 percent of tinnitus patients also show symptoms of hyperacusis. It has been speculated that tinnitus and hyperacusis have a shared cause or causes or may exist due to the same mechanisms.

Hyperacusis affects an estimated one in 50,000 people and can occur in one or both ears. Reactions to noise may result in discomfort, tension, anger, anxiety, pain, and insomnia. Everyday noises at everyday volume levels can feel intolerable, such as the sounds of running water, car engines, conversations, kitchen appliances, voices speaking on the telephone, bicycle pedals, crunching leaves, or vacuum cleaners.

Earplugs or earmuffs can help, but individuals with hyperacusis often experience a compromised quality of life, including difficulty communicating with others, working or attending school, and completing other daily activities.

While there are no specific surgical or medical treatments for hyperacusis, techniques that help people with tinnitus may also help those with hyperacusis, such as sound masking, cognitive behavioral therapy, or a combination.

This information is taken from HHF’s website. For references, see hhf.org/spring2021-references. For the latest news and research in these areas by HHF scientists, see hhf.org/research/tinnitus and hhf.org/research/hyperacusis.

50 million Americans who experience tinnitus.

30 to 40 percent Tinnitus patients who show signs of hyperacusis.

20 million Whose tinnitus is chronic, or present for more than three months.

2 million Whose tinnitus is debilitating, or disruptive to everyday life.

85 percent Hyperacusis patients who also have tinnitus.

1 in 50,000 People affected by hyperacusis.