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Workplace What Tinnitus
life-in s p i k r e d wor
Jan L. Mayes wore these cat ears to an anime convention. “They had little bells that tinkled, which I thought was funny what with my tinnitus,” she says.
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What Tinnitus Taught Me
Experiencing constant ringing in the ears as a young adult informed a future career as an audiologist—and empathy
for patients. By Jan L. Mayes
I wouldn’t be an audiologist if tinnitus hadn’t arrived in my life when I was 20-something. My tinnitus started in the 1980s after a car crash that caused severe whiplash and a concussion. I’ll always remember when the doctor said the tinnitus was a total coincidence, and had nothing to do with the accident. I remember being told, “Nothing could be done.” I refused to believe it. I switched my major from speech language pathology to audiology.
I’ve had decreased sound tolerance including pain, hate, and fear of certain sounds since childhood. I never told anyone, because it seemed crazy to be bothered by sounds that didn’t affect others. Years after I became an audiologist, there were finally scientific definitions for hyperacusis, misophonia, and phonophobia. Hyperacusis is pain sensitivity to everyday sounds. Misophonia is when certain sounds trigger dislike or hate. And phonophobia is a fear of specific sounds, especially those that would trigger hyperacusis. The decreased sound tolerance is only for certain sounds that wouldn’t affect people with typical hearing.
By the time I graduated, I already had a lot in common with my patients who had tinnitus. For example, loud tests hurt, and my hearing was “hard to test” because I couldn’t distinguish my tinnitus from hearing test tones. So I adapted testing for my patients to make it easier. I also could reassure them about common tinnitus features, like flaring up after hearing testing or the tinnitus changing with different jaw, head, or body positions. I had empathy for my patients with tinnitus distress, because my tinnitus led to insomnia, anxiety, and depression. Like most, I was my own guinea pig. I tried almost anything to lower distress, including acupuncture or naturopathic medicine which my fellow audiologists would not recommend. At times my professionalism slipped, when a patient and I debated who had “tried everything.” I had to accept I had a chronic condition that was going to flare up every now and then from stress or other reasons. Cognitive behavioral therapy-type distraction and relaxation techniques that helped me cope with chronic pain also helped me manage life with tinnitus. When sound therapy treatments became available, like many of my patients I thought at first, “I hear enough noise, thank you very much.” But I couldn’t talk the talk without walking the walk. When I discussed sound enrichment or mental wellness options with my patients, these tools were already in my coping toolbox.
By the time I graduated, I already had a lot in common with my patients who had tinnitus. For example, loud tests hurt, and my hearing was “hard to test” because I couldn’t distinguish my tinnitus from hearing test tones. So I adapted testing for my patients to make it easier. I also could reassure them about common tinnitus features, like flaring up after hearing testing or the tinnitus changing with different jaw, head, or body positions.
Now I use an assortment of tools or techniques. In general, I try to eat healthy and exercise most days including yoga, gardening, and walking my dogs. If I’m in a quiet daytime environment, I listen to music or TV, adding in something more distracting if needed, like playing Wordle or working on my latest crochet project.
For personal listening sound enrichment, I prefer earbuds with my phone or tablet set to a low comfortable volume. I like soft “wind”-type sounds while sleeping. I use relaxation techniques when needed like progressive muscle relaxation or the Breathe2Relax app. My next step is ear-level combination devices with therapeutic sounds and some amplification for daytime use. I always use earplugs at concerts. When I have tinnitus flareups, I know what helps me so they aren’t as bad and they don’t last as long as in the past.
This made me a patient-centered clinician early on. I know there is no cookie-cutter approach, since tinnitus and hyperacusis management depend on each individual’s distress level, hearing status, needs, wants, and preferences. I always asked what patients had already tried, including what helped or not. If needed, we discussed pros and cons of additional options so people could make informed decisions. What works for one person might not help somebody else, but there are still many choices available, from free, safe, self-help options to proven treatment approaches like Progressive Tinnitus Management.
Clinically, I tried to share what I wished I had been told about tinnitus when I was diagnosed. The bottom line is, something can be done. Even if there’s no cure yet, you have to keep trying. Tinnitus and hyperacusis can be effectively managed; it just might take a while to customize how you cope.
Jan L. Mayes is a science reporter for The Quiet Coalition, a program of the Boston-based Quiet Communities Inc. A retired audiologist with a master’s degree in audiology, the Vancouver resident is also an award-winning author with special interests in noise, tinnitus, and hyperacusis. For references, see hhf.org/spring2022-references.
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