Melanie West, 63, has had a ringing in her ears as long as she can remember. When she was a kid in the ‘50s and ‘60s, it was a high-pitched sound in both ears that her doctors did not believe existed. “I would go from doctor to doctor explaining, ‘I hear this sound inside of my head, and it won’t let me sleep.’ I was having a hard time concentrating, and they would tell me that I don’t have it,” she says. When West was stressed, or hadn’t had enough sleep, it would get worse and her grades would plummet. Once, the noise made her so tense that she broke a hairbrush she was holding.
The trouble with tinnitus—the medical term for ear-ringing—is there’s really no good way to measure a sound that only the patient can hear. Interest in and recognition of the condition has improved in the past couple decades, partly thanks to advances in brain science. But when West, now the CEO and chair of the board of directors of the American Tinnitus Association (ATA), was young, it was less understood.
Over time, she adapted. She read a lot of psychology books and says those helped. She started to manage a pretty good quality of life, until she got in a car accident in 2008. Another vehicle rear-ended hers at about 55 miles per hour, and something about this event changed the sound considerably.
It got louder—about twice as loud, she says—and fuller, and made more of a “shh” sound. The noise is now louder in her right ear than her left, “so they’re not the same, and even that becomes a little irritating,” she says. After the accident, “I couldn’t sleep, I didn’t want to eat. It just affects every single part of your life.”
Talking with doctors, once again, was frustrating. She describes visiting otolaryngologists—ear, nose, and throat doctors—and “literally, I sat in the parking lot, crying, because they would simply look at you and say ‘There's nothing we can do for you,’” she says. “‘Go home and learn to live with it’—I have heard that so many times in my life.”
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Tinnitus is often described as ringing in the ears, but that’s not the only sound that qualifies. It can also present as buzzing, roaring, clicking, hissing, or a noise like crickets, among other things. A type known as pulsatile tinnitus is rhythmic, often keeping time with the person’s heartbeat.
Most people will probably experience temporary tinnitus at some point in their lives after exposure to loud noises—after a concert, say. But it will likely go away. Estimating how many people have tinnitus, and the severity of each case, is difficult, because different studies have defined it in different ways. According to one measure, 50 million Americans—or 25 percent of the population—experienced any tinnitus in the past year, while 16 million, or 8 percent, experienced it “frequently.” The ATA reports that 20 million people have “burdensome” tinnitus and 2 million have “extreme and debilitating” cases. The National Institute on Deafness and Other Communication Disorders (NIDCD) asks people if they’ve had tinnitus that lasted for more than five minutes in the past year—10 percent (25 million) have. “We’re interested in something that pushes the threshold so that they noticed it for a while,” says Howard Hoffman, the director of epidemiology and statistics at the NIDCD.
Suffice it to say it’s a common experience—and, for a significant number of people, an exhausting one.
Tinnitus is not a disease in and of itself, but it can be a symptom of other underlying problems. It can also be a symptom of nothing in particular. Pulsatile tinnitus, which accounts for less than 10 percent of tinnitus cases, is unique in that it can typically be heard by the doctor as well as the patient, and it tends to be a sign of something wrong with the vascular system. With idiopathic tinnitus—the kind only the sufferer can hear—the story is more complex. It is often associated with hearing loss, but not always, and the chances of getting it increase with age. It can indicate a tumor (in which case the tinnitus will usually be one-sided) or appear as part of Ménière’s disease, otosclerosis (a disorder that causes progressive deafness), or disorders of the temperomandibular joint that connects the jaw to the skull. Exposure to loud noises, especially over long periods of time, puts a person at risk, so construction workers and musicians have higher rates of tinnitus than the general population. Tinnitus is also the number-one disability among veterans.
But “in a majority of cases, there is no known cause,” says Deborah Hall, a professor of hearing sciences at the University of Nottingham. She estimates that about 80 percent of the time, doctors would not be able to pinpoint where a patient’s tinnitus came from.
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Descriptions of tinnitus date all the way back to ancient civilizations. An Egyptian sheet of papyrus from the 16th century B.C. describes “bewitched ear,” and the Assyrians wrote on clay tablets around 700 B.C. about three different kinds of tinnitus: “whispering,” “speaking,” and “singing” of the ears.
We now know, though, that it’s actually the brain that’s singing, usually. A study from 1981 looked at patients with tinnitus who had surgery to cut their auditory nerves. Forty-five percent said their tinnitus improved post-surgery, but 55 percent said it stayed the same or got worse. Even after the nerve responsible for hearing was severed, they still heard the sound, indicating that whatever was happening to them, it wasn’t only in the ear.
When the ear is damaged, some of the auditory input the brain is used to getting suddenly disappears, explains Jinsheng Zhang, a professor of otolaryngology and communication sciences and disorders at Wayne State University. (Zhang is also the chair of the ATA’s scientific-advisory committee.) To compensate for the loss of those signals from the outside world, the brain’s auditory system becomes more active.
“Now, you can hear my voice, because my voice is a sound that’s converted to a signal,” Zhang says. “My sound signal is converted by your hair cells into neural signals and they travel to the brain. This stimulates lots of nerve cells in the brain. They become excited and they start to fire. The increased neural activity is coded, it has meaning. But if the ear is damaged, there is no sound but the brain has enhanced activity. This enhanced activity has no coded meaning.” The meaningless activity can be perceived as a sound, and then you’ve got tinnitus.
This is the simple explanation. Exactly what the brain is doing to compensate is more complex and hard to understand, and likely differs from person to person, given the wide variability in how people experience tinnitus. Some tinnitus, as previously noted, doesn’t involve hearing loss, which doesn’t seem to jive with the idea that the brain is compensating for missing sound. But research in mice has shown that there can be damage present in the inner ear even without changes to the animal’s hearing threshold, so it may be that problems can lurk even under seemingly perfect hearing—or that current tools may not be able to detect some kinds of slight hearing loss.
Aside from the auditory system, brain regions that deal with attention, arousal, and emotions are also involved in the experience of tinnitus—the condition is defined not just by the sound, but by how people react to it. If you constantly heard ringing, but you were cool with it, then it wouldn’t be a huge problem. Zhang compares it to pain—two people may get the same injury and one may be able to tolerate the pain better than the other.
“The way we manage it not only needs to treat an audiological problem, but there’s quite a lot of psychology in there as well,” Hall says. “Trying to change the way that people think about their tinnitus and what significance it has for them.”
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Here are some ways people tried to treat tinnitus in the past: The ancient Egyptians suggested poking reeds into your ears. The Assyrians would chant an incantation. Pliny the Elder, an ancient Roman scholar, favored earthworms boiled in goose grease and stuck into the ear as a treatment for all manner of ear maladies. A Welsh manuscript from the 14th century recommends taking a hot loaf of bread out of the oven, tearing it in half and holding it over your ears. “Bind and thus produce perspiration, and by the help of God you will be cured,” it reads.
Today, the available treatments are less yeasty. They focus on the two avenues Hall suggested: masking the sound, and helping people cope with it.
There is still a lot about tinnitus that is not understood, and there is no cure. There’s nothing doctors can do as of yet to make the sound go away, though researchers are looking into different kinds of brain stimulation as a possibility. But everyone I spoke to was adamant that doctors should not tell patients they just have to live with it.
As with pain, doctors treating tinnitus (usually) only have the patient’s subjective experience to go on. Hall says doctors will typically just talk with the patient about what kinds of sounds they’re hearing, how loud, and how often. To determine the pitch and volume, they may play sound recordings and ask the patient which one matches their tinnitus, but “those kind of objective measures are still more often in the domain of research rather than in the clinic,” she says. Usually, it’s just patient reports. As long as there are no indications of anything more serious, like a brain tumor or the vascular problems that can come with pulsatile tinnitus, it’s not totally necessary to figure out the sound’s origins in order to treat it.
“The concern is how it interferes with people’s daily life, as opposed to putting a label on it, saying ‘Well, this is due to that,” Hoffman says.
For people whose tinnitus comes with hearing loss, getting a hearing aid can often improve their tinnitus as well as their hearing. Doctors may recommend cognitive-behavioral therapy to reduce the distress that tinnitus can cause. Or they may recommend sound therapy, which distracts the brain from the noise it’s creating by masking it with other sounds. This can be as simple as playing background music, or as elaborate as a hearing aid that can also pipe white noise into the ear.
The American Tinnitus Association has a story its members like to tell, about how its co-founders, Jack Vernon and Charles Unice, came up with the idea for sound therapy. According to West (and to a story in the spring 2011 issue of the ATA’s magazine Tinnitus Today), Unice, who suffered from tinnitus himself, came to Portland from California in 1971 to visit Vernon. While they were out for lunch, they passed Portland’s Lovejoy Fountain. Unice stopped in his tracks and declared that while he stood by the fountain, he couldn’t hear his tinnitus. And thus the two men realized that if noise is the problem, the solution is … more noise.
West has found this to be true for herself. After her car accident, she reached out to an ATA support group, which recommended she see Michael Robb, an oto-neurologist in Phoenix, Arizona. “It took him a year to convince me,” she says. “I’ve got a little bit of vanity in me.” But once he fitted her with hearing aids that also provide sound therapy, the volume of her tinnitus went down by half. She was so impressed with Robb’s work that she volunteered to work with him as an assistant and a scheduler. A little while later, he hired her for the job as a paid position. She does this now in addition to her role as CEO of the ATA.
“[The hearing aids have] made a tremendous difference, and that’s why I dedicate myself to helping other people enjoy a better quality of life,” she says. “Do, please, in your article, give people hope. And be sure to use some ear protection.”