By David Treworgy

Originally published in the Spring 2025 issue of "Tinnitus Today" magazine.

Pain hyperacusis is an enormously challenging condition. It is invisible, with no objective diagnostic procedure. There's no gushing blood or gaping wound. Most providers, even ear, nose, and throat (ENT) physicians and audiologists, have never even heard of pain hyperacusis. The unfortunate result is that patients often receive advice that is not only unhelpful but also actively harmful.

What Is Pain Hyperacusis?

A consensus definition by Bethany Adams and coauthors defines hyperacusis as "a reduced tolerance to sound(s) that are perceived as normal to the majority of the population or were perceived as normal to the person before their onset of hyperacusis." What this means for patients is that ordinary, everyday sounds can be unbearably loud and/or physically painful. The terms loudness hyperacusis and pain hyperacusis are used to describe these two conditions, which have varying degrees of severity, and many patients report some degree of both.

I am one of those patients.

With pain hyperacusis, sometimes referred to as noxacusis (a term coined by researchers at Johns Hopkins University in 2015), sound causes pain that is immediate, delayed, or both. Immediate pain typically feels like a knife in the ear. Delayed pain, which can last hours, days, months, or even longer, most typically manifests as a burning pain.

No Objective Diagnostic Tests

A major challenge for patients and physicians alike is that there is no objective diagnostic test such as a blood test or imaging. Loudness discomfort level (LDL) testing, administered by an audiologist, consists of presenting sounds into patients' ears, which is inherently uncomfortable for people with hyperacusis. The testing is also known to be unreliable for realistically assessing a loudness tolerance problem. Further, it does not account for differences in such things as frequency and duration of sound that causes pain, and it ignores the delayed pain that is a hallmark of pain hyperacusis. Worst of all, some patients report being permanently injured by this test.

There has been extensive in vitro analysis (with cochleae donated to research) examining the cellular structures of the hearing mechanisms with high-powered microscopes to visualize damaged hair cells and synapses. As a result, scientific consensus has grown that damage at the cellular level causes hearing loss and likely contributes to tinnitus. But for pain hyperacusis, there has been no comparable research. This would be difficult to do in any case, because the rarity of pain hyperacusis makes it hard to obtain sufficient donated cochlea samples.

My Experience With Diagnosis: Misophonia or Hyperacusis?

When pain hyperacusis patients visit medical providers, even specialists, they find a lack of knowledge and understanding, especially in differentiating hyperacusis from other types of sound hypersensitivity disorders. I experienced this firsthand.

My hearing was perfectly normal until I began to reach middle age, about 10 years ago. I began to notice that loud, high-pitched sounds such as ambulance sirens were painful. I bought some earplugs and would pop them in briefly until the ambulance had passed. But the pain from those sounds gradually grew worse, so I consulted with specialists in the field. I received a confusing diagnosis—misophonia—and was advised to make a recording of ambulance sirens and play it on repeat until I "adjusted" to the sounds, and they no longer "bothered" me.

This made no sense to me at all. I tried to explain that I wasn't "bothered" by those sounds, but that they caused physical pain. This was my introduction to the professional ignorance that I have observed again and again with countless patients in countries all over the world.

The understanding of misophonia has grown tremendously since then, in part thanks to a 2011 New York Times article titled "When a Chomp or a Slurp Is a Trigger for Outrage." This article explained the difference between misophonia and hyperacusis. Misophonia is an intense emotional reaction to a soft sound, such as chewing or breathing.

The article quotes Marsha Johnson, an audiologist in Portland, Ore., who specializes in sound hypersensitivity:

Misophonia ("dislike of sound") is sometimes confused with hyperacusis, in which sound is perceived as abnormally loud or physically painful. But Dr. Johnson says they are not the same. "These people like sound, the louder the better," she said of misophonia patients. "The sounds they object to are soft, hardly audible sounds."

Dr. Johnson's description explains the difference between hyperacusis and misophonia in a way that the specialists I consulted could not—ambulance sirens are not soft, hardly audible sounds. And I did not have specific trigger sounds like a misophonia patient; anything louder than a certain decibel level was painful for me. Covering up sound for me was not an option, whereas a misophonia patient triggered by chewing can mask that sound by playing music with dinner. I cannot mask an ambulance siren. Dr. Johnson's comments helped make it clear to me that my correct diagnosis was loudness and pain hyperacusis, not misophonia.

Back then, better knowledge would have helped me. Patients often find the best thing is to do nothing—not to try to "get better." Many find that time and quiet, and protection against the risk of a surprise noise that could be injurious, are what helps them improve, though very slowly, over months and years.

Dr. James Henry, a highly respected research audiologist and a member of the American Tinnitus Association's Scientific Advisory Committee, has authored a new book that explains how to distinguish the different types of sound hypersensitivity disorders, including misophonia and pain hyperacusis, and the different approaches to managing them. His book is reviewed in this issue of Tinnitus Today on page 18. A resource like this would have been invaluable to me and should be equally invaluable for new patients (and their healthcare providers) trying to determine their diagnosis.

Sometimes Accepted Medical Practices Cause Harm

Historically, many medical interventions that were widely accepted as the standard of care in reality were harmful. Debunking such misinformation takes a long time. Perhaps the most notorious example is bloodletting, commonly performed for 2,000 years to treat diseases of all kinds until it was discontinued in the late nineteenth century. History buffs will know about the most famous victim—George Washington. As treatment for a throat infection, doctors removed around 40 percent of his blood, thinking that would treat the infection. He died. There are more modern examples of harmful standard care, too: lobotomies, thalidomide, and the 1976 swine flu vaccine, to name a few.

By the time I was being diagnosed and determining treatment, studies had shown bloodletting to be harmful and it had been discontinued for a long time, but the treatment I pursued also ended up being harmful. It was recommended that I try Tinnitus Retraining Therapy (TRT), and high success rates were cited. The idea of playing more sound into my ears using sound generators when sound already caused me so much pain seemed odd to me.

I consulted with a couple of neurotologists (ENT physicians who specialize in the ears) for advice. One said, "You will be in good hands with that approach." My inclination was to act, even though I had doubts, so I went ahead with TRT. Unfortunately, during the course of treatment, I worsened from a mild to a severe level. After six months I could not tolerate the sound generators even at the lowest level. Unfortunately, I have never recovered from that severe level. In fact, I have worsened further.

The TRT approach I used has harmed many other pain hyperacusis patients, too. Some report improvement with TRT and other sound therapies, or at least they haven't worsened. Some improve, and then worsen with an episode known as a "setback" (a further injury caused by a noise insult), because sound therapy ignores setback prevention, which is a huge problem with hyperacusis.

Patient Support Groups

After my pain hyperacusis became more severe from TRT, I was increasingly desperate and tried a middle ear surgery that reportedly had helped some hyperacusis patients. In my case, unfortunately, it did not help, though it did not make me worse. I was out of ideas for interventions, so I changed my focus to supporting others in support groups and raising money for research grants to find a cure.

For a number of years now, I have served as a volunteer to help administer support groups for hyperacusis and tinnitus, including co-leading a support group for Maryland, Virginia, and the District of Columbia that is listed on the ATA website. New members typically are in a state of frustration and confusion when they join. They generally have consulted with medical providers but received the same kind of unclear and sometimes harmful advice that I did. Veteran group members help educate people about the nature of their sound hypersensitivity (e.g., loudness hyperacusis, pain hyperacusis, misophonia) and how to best manage the condition.

Raising Money to Find a Cure

As part of my involvement in support groups, I work to raise money for the nonprofit organization Hyperacusis Research. With the money raised, Hyperacusis Research funds research grants awarded via the Hearing Health Foundation and its Emerging Research Grant program. Each grant funds $100,000 for researchers over a two-year period. We patients are always disheartened to see so much research money spent on yet another study on sound therapy. We need new therapies and novel ideas.

Many hyperacusis patients are incapacitated and have been forced to leave their jobs, so they are not able to contribute. But with online funding platforms they can raise money from family and friends. Even those with limited means will do what they can and contribute, say, $5. Every dollar helps.

The most recent grant was awarded to Manoj Kumar, PhD, of the University of Pittsburgh, to research the KCNQ2/3 potassium channel as it relates to the mitigation of noise trauma–induced hypersensitivity. Although $100,000 per grant is not a large sum in the context of medical research, we hope that after the initial work, the researchers will apply for further grants with the National Institutes of Health, which has a large budget to fund hearing-related research, including hyperacusis, through the National Institute on Deafness and Other Communication Disorders.

We Are Hopeful for the Future

We are excited about new research but understand that a real cure is most likely far in the future. In the meantime, growing awareness about types of sound hypersensitivity, including loudness and pain hyperacusis, helps patients better determine how to manage their condition and realize that, for the sake of their own health, they must question outdated conventional wisdom.

References

1. B. Adams, M. Sereda, A. Casey, P. Byrom, D. Stockdale, & D. J. Hoare. (2021). A Delphi survey to determine a definition and description of hyperacusis by clinician consensus. International Journal of Audiology, 60(8), 607–613. https://doi.org/10.1080/14992027.2020.1855370
2. C. Liu, E. Glowatzki, & P. A. Fuchs. (2015). Unmyelinated type II afferent neurons report cochlear damage. Proceedings of the National Academy of Sciences, 112(47), 14723–14727. https://doi.org/10.1073/pnas.1515228112
3. J. Cohen. (2011). When a chomp or a slurp is a trigger for outrage. New York Times, September 5, 2011. https://www.nytimes.com/2011/09/06/health/06annoy.html
4. Hyperacusis Research, https://hyperacusisresearch.org/.

David Treworgy is a pain hyperacusis patient and advocate for research to find a cure. He lives in Arlington, Va.