Marsha Johnson, Au.D., an audiologist in private practice in Portland, Oregon, opened the Oregon Tinnitus & Hyperacusis Treatment Clinic in 1997. Here, Dr. Johnson — one of the first clinicians to recognize pain hyperacusis as distinct from loudness hyperacusis — talks with Hyperacusis Research about what she has learned.

Hyperacusis Research: 

How did you become interested in tinnitus and hyperacusis?

Marsha Johnson: After my youngest child turned 5, I started taking some classes and fell in love with audiology. It mixes science and math with problem solving and rehabilitation. I opened my clinic in a strip mall and created a website, which is how people found me. I was flooded with patients.

In the late ‘90s, there was no published literature, nothing to refer to, no definitions or even remote recognition of the different kinds of decreased sound tolerance. Hyperacusis is an orphan disease, and people with painful hyperacusis constitute a fraction of those who have loudness hyperacusis, so they are in an even more abandoned, unrecognized condition. Fewer than 10 percent of my hyperacusis patients have pain. I had to learn everything first-hand from taking case histories of patients.

The field was largely stagnant until Bryan Pollard, who unfortunately died three years ago, founded the nonprofit Hyperacusis Research in 2011 and emphasized the distinction between loudness and pain.

Loudness hyperacusis may not manifest itself unless people are around moderate to loud sounds. But many people with painful hyperacusis have ear pain even when they’re not around sound. It’s like a toothache in your ear.

There are pain receptors in the middle and outer ear. This has led me to speculate that at least some of the pain may be located in the middle ear. It could be from the eardrum, bones, tiny muscles, tendons or joints.

Audiological Test Can Injure People

HR: We often hear from patients who are further injured by audiological testing. Or they are sent for MRIs, which are dangerously loud. What can you tell us about these tests?

MJ: Back when I started, the LDL test, or loudness discomfort test, was the gold standard for measuring hyperacusis in human beings. I now know the test can injure people, so over the years I have refined that test to my own satisfaction. It should never elicit pain. I don’t always do the LDL test on pain-affected patients. That’s like taking a sprained ankle and bending it all around to see if it hurts.

Patients should avoid MRI imaging, which is horrifically loud. The American Academy of Otolaryngology-Head and Neck Surgery (AAO-HNS), in its tinnitus practice guidelines, strongly advises against an MRI for tinnitus except in very special circumstances that include symptoms of a brain tumor. The group has no guidelines for hyperacusis. These tests are life-ruining for people who are damaged by them.

Families Sometimes Make the Situation Worse

HR: We hear from so many patients whose parents or families read about sound therapy or sound exposure, and think there is an easy fix. They read “success stories” online and blame their person for not getting better. In one case, parents actually removed their daughter’s bedroom door so she would be exposed to household noise. What has your experience been in dealing with relatives of patients?

MJ: Many parents cannot accept that there is something chronically wrong with their child. This is a serious issue, and families sometimes make the situation worse.

No studies have been done about sound therapy as it relates to painful hyperacusis. Much information online touts the success of sound therapy — but that is only for loudness hyperacusis. I learned this in a terrible way. My patients with pain found that sound therapy made them worse. We need to get the warning out.

Even among most audiologists, there is barely any recognition of painful hyperacusis. They offer sound therapy and cling to advice from researchers who never treated people with pain.

Setbacks generally come from an accidental noise exposure, or from a high-level exposure — such as construction noise — even with ear protection. I’ve heard this story hundreds of times. Surprise noise is the biggest enemy. I’m not sure how you soundproof your life with painful hyperacusis. Sometimes, all I can do is help people live with an incurable disorder that doesn’t always get better and might get worse.

I write letters of accommodation for students with hyperacusis. Often, it’s not just parents but also teachers who work against these students. There are ways to accommodate schoolchildren — making a quiet learning space available, allowing them to leave the classroom or go to the library, doing independent study or online learning, warning them before fire drills. These kids want to participate and want their life back but their priority is to deal with this injury.

People have all sorts of hidden conditions, like a migraine, but for some reason, with hyperacusis, others shut down their sympathy, like, “We’re going to the party and you’re coming with us; you have to get out and do things.” They say, “This sound isn’t hurting me so therefore it can’t be hurting you.” But these hyperacusis patients are not lying or malingering. They are suffering. What teenager wants to stay at home wearing protective earmuffs instead of going go-karting with friends?

Using Sound Therapy or Sound Exposure Is a Disaster

HR: We often hear about “overprotection” — that  patients should not “overprotect” their ears. We find that “overprotection” is an ill-defined and misunderstood concept. What is your view of “overprotection?”

MJ: I constantly hear from patients who go to other clinics and are told not to overprotect their ears with earplugs or earmuffs. But nobody has ever done research on pain hyperacusis to define overprotection or to see if it is even possible.

There are studies showing that wearing earplugs for two weeks causes sensitivity. But those studies are done on normal, healthy human subjects. Those are people in the middle of the bell curve, not people with injured ears.

Painful hyperacusis doesn’t act like loudness hyperacusis, and using sound therapy or sound exposure is a disaster. I can’t say that enough. Sound exposure makes it worse and if people need to use earplugs or earmuffs to protect themselves, they should. People already get plenty of sound exposure in day-to-day life and don’t need to try for more.

How can clinicians make assumptions when we barely understand what the condition is? It’s a terrible condition. I don’t want to depress people, but it’s one of the nastiest conditions out there. Sound is everywhere. It’s not true that ordinary, everyday sound can’t hurt you. That’s a lie. My patients tell me the pain is severe and incapacitating.

I don’t think anybody has looked at the extent to which painful hyperacusis changes everything. Has anyone done some kind of devastation score? Like, what percentage of your life is different from before? Painful hyperacusis is crippling and affects every aspect of a person’s life.

Soundproofing Tips

For those with hyperacusis, avoiding pain-inducing sounds — and reducing risk of the sounds that cause setbacks — is essential. Here are some ideas from Hyperacusis Research and Marsha Johnson, Au.D.

It’s hard to have a reliably quiet home, due to traffic, neighbors, dogs, lawn care, construction, and many unexpected noise sources — including noise made by other members of the household. Even light switches, running water and swishing fabric can be painful.

Still, “soundproofing at home is one of the best ways to improve your life if you have hyperacusis,” says Marsha Johnson, Au.D. “It is fine to use earplugs or earmuffs when there is a risk of noise.” Here are some suggestions. Plenty of other noise-reducing ideas can be found online.

• The kitchen is a hazardous place. Glass, metal and china should be minimized. “Those clanking sounds are so loud they can really cause pain,” Dr. Johnson says. Even those with mild hyperacusis say they have trouble loading and unloading the dishwasher — so wear ear protection while doing so.

• Instead of hard kitchenware, people can use wooden, paper or silicone plates and bowls, and bamboo utensils. Placemats on counters and tables prevent that jarring thud when an object is set down. A sink mat in the kitchen sink gives cookware a soft landing.

• Around the house, people can de-squeak hinges, cover floors with rugs and use padding to prevent drawers from slamming. Soft surfaces — fabric, cushions, towels — absorb sound.

• To clean rugs and carpets, Dr. Johnson suggests an old-fashioned carpet sweeper — “what my grandmother used before they had electricity.” Those into higher tech can use a robot vacuum when they’re out of the room. Some regular vacuum cleaners are quieter than others, and can be used with appropriate ear protection.

• Double- or triple-glazed windows, or soundproof windows (an additional window, like a storm window), make a big difference in blocking noise from outside. The whole home need not be done at once. “You can start with rooms where you spend the most time,” Dr. Johnson says.

• Scatter earmuffs around the house (and in the car) so you can grab them quickly in case of a surprise noise — a revving engine, a barking dog, a passing siren.

• If you are unprepared, stick your fingers in your ears, or push the tragus (the little piece of cartilage in front of the ear canal) to block noise. The duration of exposure is significant, so get away as soon as possible.

• Be cautious around children. “Living with children creates a lot of family unhappiness for a person with hyperacusis,” Dr. Johnson says. “That person should leave the room if a baby is screaming or a toddler is shouting, even if everyone is having fun.”

• Take breaks when needed. “Set aside respite time in your schedule and go to an isolated place to give your ears a rest,” Dr. Johnson says. After an episode of too much noise, take as much time to recover as necessary.

• Plan an escape route if a situation turns unexpectedly loud. For example, if you encounter screaming children in the grocery store, don’t hesitate to abandon your cart and leave. Or opt for delivery rather than a trip to the store. “Many people end up worse because they don’t want to seem rude or to disappoint others,” Dr. Johnson says. “Others don’t understand the cost for people with severe pain hyperacusis.”

• Be proactive about declining medical testing or treatment. “Certain tests are barbaric,” Dr. Johnson says. LDL testing, reflex testing and caloric testing are among the tests that can permanently worsen people with hyperacusis. Some medications are ototoxic. Ultrasonic dental cleaning is extremely high-risk, as is MRI imaging.

• Always keep the volume low on your phone and computer. Alerts can blare with no warning. In the car, disconnect or lower the volume on as many beeps, voices and noisemakers as possible. For example, disconnect Bluetooth so a phone doesn’t inadvertently auto-synch with a car’s audio system and allow a surprise call to come through. “You must take precautions to protect yourself,” Dr. Johnson says.

• Take care around food packaging. A lot of plastic packaging crinkles or snaps unexpectedly, so wear ear protection when opening packages. Transfer food from loud containers to softer ones, often made from silicone or plastic.

• Use shelf liner, silicone mats or tea towels on hard refrigerator and cabinet shelves to avoid clanks when setting items down; wrap glass jars with rubber bands and alternate glass jars with plastic ones.

• Remind all visitors to your home to silence their phones.

• Be careful when buying new appliances, since they increasingly come with beepy alarms. You can use a remote control to turn on noisy appliances, like blenders, from another room.

• Use key caps on keys to keep metal from clanking.

• When possible, communicate by computer or text rather than by phone. Use captioning apps for calls and for television.

• For appointments, wait in the car rather than in a noisy waiting room. The office can text you when they are ready. Avoid scheduling appointments during busy times of day.