Stolen silence: Tinnitus Awareness Week in Kalamazoo

Editor's note: This story is part of Southwest Michigan's Second Wave's On the Ground Kalamazoo series.

KALAMAZOO, MI — Over 16 million people a year awake to discover their silence has been stolen. A soft, loud, or high-pitched noise has crept into their heads overnight. That unwanted, often nonstop noise can be severe enough to disable a person — or even lead to suicide.

The medical term for the condition is tinnitus and it’s estimated that roughly 10 percent of American adults experience it, some for a very short time and others for half a lifetime. An estimated 25 million adults are affected, according to the federal National Institute on Deafness and Other Communication Disorders.

Tinnitus sounds are more than ringing in the ears; those phantom noises include buzzing, roaring, clicking, hissing, and humming. The noises may vary in pitch from a low roar to a high squeal, and you may hear it in one or both ears. In some cases, the sound can be so loud it interferes with your ability to concentrate or hear external sound. Tinnitus also may come and go.

Kalamazoo resident Anne Pancella, 67, has had tinnitus for seven yeras.Kalamazoo resident Anne Pancella, 67, says, “My tinnitus started about seven years ago. I first noticed it when I had a really bad cold and I had some ringing in my ears, but then it never went away. The cold went away but the ringing stayed. It’s been constant since then.”

Pancella says the volume is moderate.  “It’s a high-pitched ringing, kind of metallic sounding, maybe like a cicada.” 

She is retired after having a career in different jobs, including being a high school English teacher for a while and an academic advisor at a large university. She comments, “It makes me sad that I probably will never experience silence again because I really like silence. I like quiet, and now if I’m out walking in the woods by myself I would like to just be in the quiet. I would just really like one more time to just be in some remote woods in silence, and that probably won’t happen.

“It’s manageable. There’s nothing I can do so you just have to accept and try not to let it bother you too much. At certain times I forget about it; if I’m really engaged in doing something I don’t notice it. But then all of a sudden I’ll go back to it. It’s unpleasant but I just have to try a different attitude.”

The most common causes of tinnitus are exposure to loud noise, age-related hearing loss, earwax blockage, head and neck trauma, cardiovascular disorders, neurological conditions, and stress and anxiety. When it is linked to an underlying medical issue, tinnitus can sometimes be eliminated or the sound may be reduced, so a medical exam is recommended when tinnitus does not disappear within a few days. 

Sixteen million Americans seek medical attention for tinnitus annually, according to Hearing Health Foundation, the largest nonprofit funder of hearing and balance research. The foundation also reports, “Tinnitus repeatedly ranks as the No. 1 disability among returning military service members.”

Tinnitus Awareness Week is observed the first full week of February. On Monday, Feb. 5, Texas Roadhouse, a national chain of steakhouses, along with the American Tinnitus Association (ATA), will hold a fundraiser. Texas Roadhouse, with about 700 locations in the U.S., will donate all the day’s profits from dine-in and to-go meals to ATA. Texas Roadhouse holds this event to honor its founder, Kent Taylor, who died by suicide in 2021 at age 65. His family said Taylor had post-COVID-19 symptoms including severe tinnitus. This is the third year the fundraiser is being held. Also, Texas Roadhouse is offering ATA-branded gift cards on its website through March 31 and 10 percent of those card sales will go to the association.

Sara K. Downs, ATA interim executive director, says lack of awareness means millions of people aren't getting proper guidance and support from their healthcare providers; aren't understood by friends and family, which can lead to a sense of isolation and hopelessness; and aren't aware that effective interventions are available in many instances.

"Without awareness and meaningful support, people often suffer in ways that are difficult for a person without the condition to understand," Downs said. "Pushed to the edge of that suffering, some people take their lives; the burden is just too heavy.”

Last year the Texas Roadhouse fundraiser resulted in a check for $828,248 for the American Tinnitus Association, which was accepted by Holland, Michigan audiologist Stelios Dokianakis who serves on the ATA board of directors.Last year the Texas Roadhouse fundraiser resulted in a check for $828,248 being presented to Holland, Michigan audiologist Stelios Dokianakis, who accepted it on behalf of the American Tinnitus Association. He says, “What I am most excited about is the ability to fund ‘seed’ grants. What I love about seed grants is that they kick-start research and allow researchers with new ideas to prove some of those concepts, enabling them to qualify for much larger grants that can lead to breakthrough discoveries. 

“As an example, in 2009 the ATA funded a researcher from the University of Pittsburgh School of Medicine with a $75,000 grant. Those funds allowed him to secure over $4 million in government grants over the following decade. His results, on the development of therapeutic drugs that prevent the triggering of tinnitus, are helping us move closer to a pharmacological answer to tinnitus.”

Dokianakis is vice chair of the ATA’s board and the chair is another Michigander, Jinsheng Zhang, Ph.D., of Detroit. A third Michigan resident on the board is Ron Zagel, a longtime Grand Rapids businessman and owner of Jonathan Stevens Mattress Company who is one of several representatives of patients. Now in his sixth year on the board, Zagel says, “I was in the Army Reserve, and when I got out of active duty going through all the rifle ranges and all the requirements I had ringing in my ears way back then.” 

However, that soon went away but about 26 years ago the tinnitus came back. “I’ve lived with it ever since; it never goes away. It’s loudest when I’m thinking about it and talking about it.

“Generally I’m not as handicapped as a lot of people can be because I can concentrate on other things,” Zagel says. “When I go to bed at night I have white noise, a fan going or dehumidifier going or an air cooler going. It gets louder once in a while but I’ve learned to live with it.”

Ron Zagel, owner of Jonathan Stevens Mattress CompanyHe continues, “I’ve done all the bad things you’re not supposed to do to take care of your hearing. No. 1 was the rifle range in the army. My first job was working around loud machinery; back then you didn’t think about protecting your ears.  As a kid there were a lot of rock concerts—the louder the better. Then even as a young adult you go out and cut the lawn and you don’t think about putting anything on your ears to protect them from the lawn mower.

“One of the reasons that I joined the board was because I believe in research; I’d like to see a lot of it get done. Research now is showing that tinnitus is really associated more with the brain. It’s unfortunate you see all these ads about putting this stuff in your ears and your tinnitus will go away, and it just isn’t true.”

Zagel has high praise for the ATA’s phone helpline, which he says is used by thousands of people and may even save lives. “ATA works to ensure that anyone with tinnitus receives credible guidance and appropriate support. The call line has tinnitus specialists who understand the full spectrum of tinnitus so people can get the right kind of support and help,” he says.

The ATA hotline number is 800-634-8978, extension 3, and operates seven days a week, excluding Thanksgiving, Christmas Day, and New Year’s Day. Joy Onozuka, ATA tinnitus advisors program coordinator, says, “We also speak with family members and friends who are trying to support loved ones. This is ATA’s way of empowering people who’ve often been told incorrectly that there’s nothing that can be done about tinnitus.

“Callers leave a brief message on extension 3 and can expect to hear back from an advisor within 72 hours, if not sooner. The intention is to provide unbiased and informed guidance, which often enables a person to immediately address and resolve fears and misinformation they may have picked up from various sources including the internet.”

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