The Unspoken Agony of Misophonia

With the exception of my annoyance of the rasping of emory boards and my irritation from the squeak of dried-out pencil erasers on paper, the excruciating experience of misophonia has eluded me.

I’m sitting in my car in traffic and dictating this post to Siri. There’s another accident up ahead on the DC Beltway. We are gridlocked. I am returning from a trip to Virginia, where I spent the afternoon with a woman who wants nothing more than peace from the mental agony she experiences from soft everyday sounds.

I think almost everyone is annoyed by the squeal of fingernails scraping a blackboard, or the scream of a high-pitched young voice crying. I suspect I never really understood the difference between simple annoyance and a true aversion fight or flight reaction. “When I hear people slurping or chewing ice, it can feel physically painful," she begins, adjusting her glasses, and rubbing her cheekbone, as if anticipating what I would be putting her through today.

We were sitting side-by-side at a table in a Panera, and I was painfully conscious that anything I might eat or drink could create sounds that would cause a trigger. "Don’t worry about it, “she said noticing me looking hesitantly at my wild rice and chicken soup. "I have kids, I have a husband. Do you think they go out of their way to be careful for me?"

After she ordered her own food, a bowl of broccoli cheese soup and a sandwich, we continued with our real-life misophonia low-gain hearing aid fitting. I’ve worked with a good number of people with misophonia who had benefited from the use of these devices with various configurations of settings. However, I still haven’t yet gotten to the point that I’m able to predict which settings might work with which patients. Instead it’s been mostly trial and error; leave no stone unturned.

Many of those patients have had secondary sensory issues, such as auditory processing disorders, hyperacusis, or tinnitus. But to really look at this particular issue, I had needed a highly functional and articulate adult who didn’t have any secondary comorbidities. I needed someone who could tell me what was and was not working.

This particular situation, which I have been given permission to discuss openly (to a point) was relatively ideal, because the person in question worked in an allied field to audiology, and therefore had familiarity with both current assistive listening devices and hearing aid technologies. She harbored no illusions about my abilities, nor the strengths and shortcomings of my tools and materials. I particularly appreciated her background knowledge because it meant she was far less likely to experience a placebo effect from any treatment I provided. The last thing I wanted to see was a placebo effect. We need real results. Real observations, positive or negative, not magical thinking leading people to unrealistic expectations. There is no miracle cure.

So we ate. I slurped my soup and noisily chewed my ice. She winced until she didn’t. “I think that one was better," she said, "but I liked the adjustment you did before that one even more. Doesn’t this remind you a bit of when you go to the optometrist and they are having you compare two lenses to each other?"

I laughed and nodded. I’ve always been horrible at making those small distinctions. But that was exactly what we were doing. We were exploring every variable that I thought was likely to impact her tolerance of soft sounds, particularly, soft body made sounds. We adjusted noise reduction, we altered levels of various pitches for soft, medium, and loud sounds. We added in masking noise. We artificially distorted certain sounds to reduce the perception of sharpness. It was really an ideal situation, a real life laboratory with a well-informed subject, who truly was suffering from the condition I was trying to treat.

Unfortunately, most of my patients are not so blessed with the ability to self-reflect and explain their inner experience. It is for this reason that I really enjoy seeking out articulate adults who can help me explore and improve. There is no magic pill for this condition. It can exacerbate, and the stories that some individuals tell themselves about their self-worth may leave them vulnerable to self harm, as well as to the risk of abusing others, so as to protect themselves from the onslaught of sounds that pain and enrage them.

I read the groups where the parents of these children talk about the upheaval emanated from children’s reactions to their triggers, that is the sound made by the people in their families. They are tortured by their own minds most often in the presence of their loved ones.

Have you tried CBD oil? What about hypnosis? Acupuncture? Have you made sure they don’t still have their primitive reflexes? My son did really well with a counselor. My daughter uses masking noise, and I’m worried that she’s maxing it out and will damage her hearing. Do you know my cousin, Paul? I don’t think he’s left his room more than a few times this year. He's never going to graduate high school. What about psychiatric medication? What about meditation?

So many questions and so few clear answers.

We need more adults who are willing to step up to be the voice for those who don’t have one. This is not some thing that will be solved entirely by hard science or counseling, but a combination between the two. Maybe it can’t be solved. It may not be a perfect puzzle. It wouldn’t surprise me if at least a few of the pieces remain missing for quite a while, if not forever. Regardless of the incomplete picture, I do think we can find the gestalt, the general sense of the problem, allowing misophonia to be at least partially managed in many cases.

Independent adults who develop this disorder surely suffer. Even worse are those who cannot control their own environments, or articulate their own needs in such a way that they can be even minimally fulfilled by others. The worst off may be those who blame themselves for their mis-perceptions of sound, or pin culpability on those around them, in such a way that they cut themselves off from their own lives and environments, trapped alone, where they are never asked to endure anything but lonely silence.