PERSONAL STORY
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.
“…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better determine how to manage their condition and realize that, for the sake of their own health, they must question outdated conventional wisdom.” www.ATA.org
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.”3 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 TINNITUS TODAY SPRING 2025
11