Martin Oleksy’s life changed at a job interview.
During the interview, the company’s fire-alarm system sounded. And then again. Then twice more. “Each test pierced my ears harder than the previous time,” says the 46-year-old advertising and marketing executive. “I had to step out; it was painful and distracting.”
Oleksy went straight home and to bed with his ears still ringing. “It didn’t fade,” he says. The sound—and the pain—woke him up in the middle of the night. He assumed it was an ear infection.
While some cases of tinnitus, a phantom noise phenomenon, are only temporary, Oleksy’s condition did not abate. “I could hear everything,” he says. “A fork dropping on the kitchen floor hurt my ears. The sound of my dog’s leash tags clinking together hurt. I had to have the TV so low that other people couldn’t hear it. For a few weeks, I just shut down. I wondered: where do I fit in a world that’s become too loud for me?”
The condition of finding everyday noises painful, called hyperacusis, can accompany ringing in the ears, known as tinnitus. Beethoven had both conditions. The estimated 50 million Americans with tinnitus hear a sound—constantly—that no one else hears. The sound isn’t always a ringing. “Hissing, static, crickets, screeching, whooshing, roaring, pulsing, ocean waves, buzzing, dial tones and even music” are all possibilities, according to the American Tinnitus Association (ATA).
Many patients with the condition find further frustration when they seek treatment. Oleksy saw an ear specialist during what he calls a “quick inand-out visit.” The doctor diagnosed him with tinnitus and told him there was no cure. That was it.
Few physicians are experts in treatment for tinnitus. Melanie West, ATA CEO/co-executive director and someone who has the condition herself, says there are only 45 otoneurologists (neurologists who have further fellowship training in treating tinnitus) in the entire country. She works for one of them—Michael J.A. Robb, MD.
Tinnitus is both an ear problem and a brain problem, says Jinsheng Zhang, PhD, ATA’s scientific advisory committee chair and professor and research director in the otolaryngology/head and neck surgery department at Wayne State University in Detroit.
That’s why it requires special training to treat. Besides otoneurologists, doctors of audiology may also be helpful. But West says not to despair over a dearth of tinnitus doctors. The ATA has a list of health care providers trained to treat tinnitus and can refer patients to 60 support groups across the country.
NO KNOWN CAUSE; MANY POSSIBILITIES
Doctors aren’t sure what causes tinnitus, although they know a number of scenarios can bring it on. It can be instantaneous—being near a firecracker, explosive or alarm when it goes off. William Shatner developed tinnitus on the set of Star Trek after a special-effects explosion went awry. Martin Oleksy’s condition came on suddenly, as well.
The other cause is cumulative exposure. That’s what happened with Mike Barth, a 62-year-old Baltimore musician who says he’s been “beating up [his] ears since [he] was 13.” The guitarist was 42 when the ringing in his ears started. The sound he thought was temporary turned out to be permanent.
He’s sure it was all the years of rock that led to his tinnitus. “I didn’t use earplugs, even though I knew better,” he says.
“Rock and roll is supposed to be loud. No one wants to be the one to say ‘Turn that down.’”
Other causes can include injury to the head or neck, TMJ disorders, drugs that are oto-toxic (meaning: toxic to the ear) and some viruses. West says hundreds of drugs can be oto-toxic—including over-the-counter ones like ibuprofen. Always ask your doctor or pharmacist about possible side effects of any drug you take.
A number of veterans have the condition. In fact, tinnitus has been the No. 1 military service-related disability for the past six years—even more prevalent than hearing loss.
TINNITUS PAIN (AND ANGUISH)
You’re probably familiar with the concept of “phantom perception” because of the phenomenon of phantom limb pain (pain felt in a limb that isn’t there). Just as phantom limb pain is real, so is the perception of sound that isn’t there … to the person hearing it. And there can be real pain that accompanies the constant sound.
Barth experienced pain, but he’s not sure if it was real or imagined. The anxiety he felt, though, was real: “I developed a fear of loud noises. I constantly worried the condition was going to get worse. I quit playing music. My young son had to be asked not to holler. That’s a drag to do to a loud little boy.”
Barth became obsessed with his condition and felt suicidal. Suicidal thoughts are reported by a number of tinnitus sufferers.
Barth tried many treatment options. One involved doctors “adjusting the joints in his jaw,” which turned out to be ineffective. When he heard about a treatment offered in Baltimore, he signed up. He was fitted for a custom earpiece, similar to a hearing aid, which he wore eight hours a day for nearly two years. The device delivers white noise to the ear and retrains the brain to ignore the ringing sound tinnitus produces.
“It eliminated my anxiety, which—for me—was the real issue,” Barth says. He’s returned to playing music and has reclaimed his life.
TREATMENTS (AND HOPE)
ATA’s Melanie West says many treatment options exist and recommends teaming with a doctor equipped to help you find the most effective one, which might include acupuncture, hypnosis, meditation, white-noise machines and neuromodulation.
Zhang says one common treatment option is cognitive behavior therapy. It provides the patient with coping strategies. Another option: sound therapy, which masks or trains the brain to ignore the sound. Both therapies may be used in combination.
Martin Oleksy discovered, through his own research, that taking over-the-counter lipoflavinoid supplements helped. “They’re mostly vitamin B, so they really helped improve my mood,” he says. “I don’t take them daily; I use them every now and then.”
Zhang isn’t familiar with lipoflavinoid supplements but says treatments generally work on either the brain’s auditory system or limbic system, which is responsible for emotional distress. Zhang encourages patients to work with their doctors to identify safe and effective ways to produce a calm state.
Even during his worst days, Oleksy never missed a day of the radio show he hosted. “Being in a studio is loud, but I put in earplugs before I put my headphones on, and that helped. Not missing work was my way of fighting back.”
There is good news: some types of tinnitus can be corrected. Pulsatile tinnitus, the perception of pulsing sounds, often in keeping with the patient’s heartbeat, can be corrected with surgery. Doctors may not call it a cure, but a patient likely would.
A masking device—like the custom-made device Mike Barth used—can relieve (because it cannot be cured) tinnitus in a patient who hasn’t experienced hearing loss. And even in patients with hearing loss, it can offer relief. As many as 68 percent of people with high-frequency hearing loss may get some percentage of relief, according to West.
West, 64, has had tinnitus her entire life—either because she had a lot of ear infections as a child or as a result of the antibiotics she took for those infections—but the condition became unbearable after a car accident seven years ago. “I couldn’t sleep, eat, exercise or concentrate,” she says.
She was referred to Dr. Michael Robb. The two are now colleagues at ATA. West says that through Dr. Robb, she discovered what can exacerbate her condition, caffeine and alcohol increase the perceived volume of what she hears. Sugar and salt intake can also have an effect on her. Your own triggers may be different.
Dr. Robb recommends the custom-made hearing device that creates white noise that tricks your brain into ignoring the ringing sound. West resisted at first; she felt she was too young for a hearing aid. “But now, I proudly wear it,” she says. “My hearing aid is my best friend. It’s not a placebo, either. I always know when the battery has run out of charge, because my tinnitus starts to come back.”
Zhang says cochlear implants have proven successful in treatment for tinnitus in some cases. “We know they can work, but we don’t yet know why they work,” he says.
And one day, there may be a pharmacological treatment. Biotech companies are already working on clinical trials involving local drug administration in the ear.
Of course, prevention is always the best treatment. Wearing earplugs in loud situations—at concerts or football games, around machinery, when using firearms—is the best safeguard.
LIVING WITH TINNITUS
Barth had a sudden realization one day: “I have this condition, but I’m alive.” He was grateful for that and suddenly determined not to let tinnitus rule his life. He still hears the noise, but it’s faded into the background.
Indeed, Zhang says, improvement is possible for anyone with tinnitus.
Oleksy has learned to live with the condition. “If I’m in control of the volume, I’m OK. I know there are people who live with worse afflictions.
“Tinnitus hasn’t interrupted my business goals, but it has interrupted my social life,” he continues. “If I met a woman who loves going to big concerts, this would be an issue for us. (laughing) Luckily, I’ve seen all the groups I ever wanted to see.”
He even sees a bright side to the condition. He cuts his own grass but needs to use an old-fashioned blade mower because it’s quieter than the noisier riding mowers. “It’s better exercise, anyway,” he says with a smile.
PainPathways is the first, only and ultimate pain magazine. First published in spring 2008, PainPathways is the culmination of the vision of Richard L. Rauck, MD, to provide a shared resource for people living with and caring for others in pain. This quarterly resource not only provides in-depth information on current treatments, therapies and research studies but also connects people who live with pain, both personally and professionally.