The Spectre of Treating Misophonia

I have to say that after working with auditory processing, hyperacusis (provided it’s not phonophobia), tinnitus, and hearing loss... that misophonia is, by far, the worst thing I think that can happen to a family as a result of a hearing dysfunction.

Misophonia can tear people's lives and families apart. It insidiously teaches its victims rage, disgust, isolation, and fear.

I was totally unaware of it as a student in the 1990s, or even as clinicial audiologist in ENT and dispensing practices, until I happened upon a boy who spent a year isolated from school, sitting in a hallway, so he couldn’t strike his classmates. He hallucinated his auditory triggers, even in the masking noise I provided via low gain hearing aids to blunt them. Eventually, I had to refer him to psychiatry.

As a professional who has struggled with sensory processing issues myself, as well as anxiety and depression, and as somebody takes medication, I knew that this young boy was beyond my reach, at least at the time. I think he’d be beyond my abilities to manage as a solo audiologist even now. During my discussions with him and his family, I was worried he might be contemplating suicide. Looking back, I would not attempt to work with a child that severe, without an integrated multidisciplinary team.

Misophonia is terrifying, with its interplay of obsessive-compulsive-like thought patterns, anxiety issues, self-segregation and isolation, impulsivity, struggle self-control, aftermath of guilt, anger, rigidity, and unintentional egocentrism. More mysterious still, how does it seem to spring, sometimes fully developed, seemingly out of nowhere?

I love working with auditory processing and hearing loss, but it’s become a bit predictable as I’ve gotten better at it. While I am far from done with those mysteries, because of my own history with anxiety and compulsion, I’m finding myself increasingly drawn to these lost kids and adults. I love that I have learned via my APD experiences, how to effectively directly work with them in their home environments.

Through the internet, I can easily filter and adjust the triggers they suffer with in real time and in real life situation. I’ve been surprised how much I’ve seen some of them improve and I’m looking forward to networking with other professionals and parents and trying to think tank some better ways of approaching misophonia from a child or individual centered method that promotes self advocacy without controlling others.

Of the four children and teens I currently am serving in my trial (as well as my ongoing patients), last we met, they all report they are doing well. Misophonia is capricious, and benefit can vanish and reappear. This is no simple hearing loss. This is a dysfunctional connection between sound and the limbic system. Fight or flight.

I’m not a therapist. I’m an audiologist. I listen to you talk and I try to come up with technological and practical solutions. There’s no couch in my office.

In all truth, my decades of working with straightforward patients may have been easier, but it was far less gratifying. I am a lifelong seeker of new quests, and in doing so, skillfully provided a challenge to the people around me.

What can I say, but you don’t really want a creatively bored clinician storming your multi-physician ENT practice, only to suddenly deciding to “help” increase efficiency in hearing aid dispensing. In my constant need for intellectual stimulation, I admit I tended to festoon workplaces with second-hand large screen televisions and stereo equipment.

In sterile clinics, I emulated chaotic living spaces, next to thin-walled exam rooms, simulating noisy bar scenes and playing old movies for tired congressmen and lawyers. I insisted on testing children both in quiet and noise, without permission or prescription, jacking my own equipment into their delicate (20 year old) audiometers. I seemed to often distract highrise window washers. In entertaining myself and my patients in the name of holistic hearing healthcare, I admit I was notorious for creating a racket. Both I and my patients tended to enjoyed the goings on. My coworkers and employers not so much!

Having finally gone solo, so as to be able set my own standards without bending policy, I now relish collaborative teamwork with families in problem-solving; a method that, in my opinion, required for misophonia populations. Lately I’ve been collaborating with Deaf and hard-of-hearing education professionals about intentional selective hearing, that is, the ability to elect not to hear (yet be able to communicate) at times, as a chance to destimulate without isolation, and with occupational therapists, about methods of using other types of sensory stimulation to decrease the contrast of triggers and improve quality of life through calming sensations. I’ve also been talking with various special-education advocates, and psychologists about coming up with some more useful accommodation options that we can endorse as a team.

I know it's impractical to consider approaching individuals in a cookie cutter fashion. I also a well aware of my personal and professional limitations; my audiological expertise and tools are limited to the technology and counseling tools within the scope of audiology.

I am not an "expert." I am someone who questions. I am someone who often fails.

(I am someone who gets dizzy and tired in noise. I’m the kid who had failing grades until middle school. I get distracted by shiny things and I like squirrels. But it’s those things that keep me going, and let me stay motivated and creative. Or so I tell myself when I fall.)

I’m also someone who picks myself up again and is flexible enough to listen, and then to consider trying something different. Or to stop trying and ask for help.

I try not to believe or even suspect or believe that misophonia is a monster that can be easily tamed. Effective intervention requires incredible amounts of coordinated strategy and cooperation. Using my low gain aids is helpful, but it’s a tool limited by my use and imagination. These devices aren't magic pills.

Every child (or adult) needs us, as professionals, to build different profile. Doing so takes trial and error, and time, and then more time, before you can ever figure out what direction is up. Because up is different for each individual. Meanwhile, each individual and their loved ones perceives that they are running out of time, tolerance, and air.