Until four years ago, Dr. Stephen Nagler, 49, was a busy breast and colon cancer surgeon in Atlanta.
Suddenly, he began suffering from tinnitus, which most people describe as a ringing in the ears, but for him was “a cross between the sound of a teakettle and a jet turbine.”
“It was incredibly loud. It was there all the time. Every waking moment my head was screaming,” he says.
An estimated 50 million Americans have some form of tinnitus, according to the American Tinnitus Association, and it’s often triggered by exposure to loud noise and accompanied by some degree of hearing loss. For 12 million sufferers, tinnitus is bad enough to affect everyday life.
And for 2 million, like Nagler, tinnitus (pronounced “TIN-nit-us” or “tin-NITE-us”) becomes disabling. “It can drive to you distraction and utter despair,” he says.
In rare cases, it can drive people to suicide.
In Nagler’s case, probably triggered by medications, things got so bad that he had to stop working. “I was bedridden,” he says. “I couldn’t concentrate. I couldn’t make decisions. I stayed home and held my head most of the day.”
Like similar sufferers, Nagler went on a “tinnitus odyssey,” eventually seeing 15 doctors. He started with his internist, then saw an ear, nose and throat specialist, then an ear specialist, then a neurologist, and a psychiatrist.
He tried herbs, histamine medications, acupuncture and “masking” devices, small gadgets that are worn like hearing aids and flood the ear with noise to drown out the tinnitus.
Nothing helped – until he consulted neuroscientist Pawel J. Jastreboff of the University of Maryland, whose theories got a boost in January when researchers at the State University of New York in Buffalo published a tiny but provocative study in the journal Neurology.
Just as Jastreboff had predicted 15 years ago, they showed that tinnitus – a kind of phantom noise that does not come from the outside world – involves not just the auditory cortex in the brain, but the limbic, or emotional, system as well. That’s a possible clue as to why tinnitus create so much anxiety and distress.
“This was a surprise,” says experimental psychologist Richard Salvi, who, with colleague Alan H. Lockwood, studied four tinnitus patients who had an unusual ability. They could turn their tinnitus on and off with various tricks, like moving their jaws, clenching their teeth or pressing on the face.
As they turned their tinnitus up and down, Salvi and Lockwood studied the patients’ brains with PET ( positron emission tomography) scans that can monitor the level of activity in all parts of the brain. When the tinnitus was turned up, the auditory cortex and the limbic systems of their brains “lit up” on the scans; when it was quiet, their brains were, too.
This was music to Jastreboff’s ears, more evidence, he says, that he has long been on the right track. Unlike some theorists, Jastreboff believes tinnitus is not only an inner ear problem but involves abnormal electrical activity in higher brain centers as well.
This fits, others say, with the observation that although surgery to cut the auditory nerve that runs from the ear to the brain can sometimes make tinnitus better, it often makes it worse – almost as if, with no sensory input coming in from the outside world, the brain’s sound system tries to stimulate itself.
If tinnitus does involve higher brain function, Jastreboff’s theory goes, then it should be possible to retrain the brain to filter out annoying signals and be unaware of them.
Jastreboff’s program, which helped surgeon Nagler so much he opened his own center, the Southeastern Comprehensive Tinnitus Clinic in Atlanta, has two parts: a counselling component that teaches people about tinnitus and helps them dissociate feelings of panic from the auditory sensations, and an old Pavlovian technique called “passive extinction.”
To accomplish this, Jastreboff has patients wear a device that looks like a hearing aid all day long for several months. It provides a constant, broadband sound (a kind of “white noise”) that does not mask tinnitus but allows the brain to pair this benign sound with tinnitus and to filter both out. The brain does the work of “habituation,” he says, adding that 80 percent of his patients get “significant improvement.”
Nagler puts it this way. With masking, he says, if you rate your tinnitus at 10 on a 10-point scale, then add another noise that’s also a 10, you won’t hear the tinnitus because it’s drowned out. But because you don’t hear it, you cannot “habituate it.” By using a softer, constant sound, you learn to become unaware of tinnitus.
Today, Nagler says he can still hear his tinnitus “if I listen for it and occasionally, it can distract me, even if I don’t listen for it. It still keeps me from surgery. But it’s no longer annoying or distressing, and most of the time, I don’t hear it at all.”
The treatment can be costly – $ 1,500 to $ 3,800, he says, and insurers may not pay. But the retraining techniques are available now at dozens of centers nationwide, though, none, apparently, in Boston.
The fact that the technique hasn’t penetrated the Boston medical establishment doesn’t surprise Dr. David Vernick, an ear, nose and throat specialist at Beth Israel Deaconess Medical Center and Brigham and Women’s Hospital.
Though the electronics Jastreboff uses may be more accurate than older masking devices, he says, in general, tinnitus treatments have “a huge placebo effect. If I give you a pill and treat you well and make you feel good, that will work 60 to 70 percent of the time. And that’s true of almost every treatment.”
But try telling that to Nagler. “The beauty of tinnitus retraining therapy,” he says, is that it “cleaves the bond between the limbic system and the tinnitus signal.”
To skeptics, that might translate into little more than simply learning to ignore or live with tinnitus. But to desperate sufferers like Nagler, it’s nothing less than salvation.
Coping with tinnitus
See an ear, nose and throat specialist to rule out problems like impacted ear wax, Meniere’s disease, otosclerosis (hardening of the bones in the middle ear) or an acoustic tumor.
- Avoid extremes of sound. Loud noises can damage hearing and may cause tinnitus or make it worse. Tinnitus does not cause hearing loss, but hearing loss can cause tinnitus. But silence is bad, too, because it can make tinnitus seem worse.
- If tinnitus starts or gets worse with aspirin, caffeine, cigarettes, quinine or alcohol, stop using these substances. More than 200 drugs, including some antibiotics, may also make tinnitus worse, so check with your doctor.
- If an ear, nose and throat specialist cannot help you, consider biofeedback, relaxation training, yoga, acupuncture, self-hypnosis or other stress reduction techniques to offset the anxiety that is often associated with tinnitus.
- Anti-convulsant, anti-depressant, anti-anxiety and antihistame drugs also help some tinnitus patients.
- Some people use herbal remedies like ginkgo baloba, though there is almost no solid data on this.
For more information on tinnitus, call:
The American Tinnitus Association, 1-800-634-8978. On the web, it’s www.ata.org.