I recently had an appointment with the doctor who is doing my audiology rehab. This type of therapy has
been a bit of a journey. One that I started much too late.
After the accident that left me with a traumatic brain injury, it took several months for my neurologist to suggest consulting with an audiologist. When it was time for the test results, the news was grim. I was diagnosed with tinnitus, hyperacusis, and misophonia.
The difference between these terms still challenges me. The first, tinnitus, is one I think most people are familiar with. Commonly, it's a high-pitched ringing noise. Although it can have triggers, for some it can come without provocation. Hyperacusis is defined as a sensitivity to the level of noise. Usually, loud noise.
Misophonia is a whole different animal. It’s become a catch all term in the brain injury arena. Defined as sensitivity to noise, this can vary wildly from person to person. It is often defined as severely disliking certain noise, like repetitive construction work.
But for TBI patients, a misophonia diagnosis can be much more complicated. For years after my injury, when engaging in a conversation with just one other person I had immediate nausea and cognitive overload. My life became incredibly small as I was triggered by all kinds of noises. I couldn’t tolerate music, street noise. . . The list seemed endless. To compound the issue, if the noise continued for too long, I would become irritable and eventually begin crying. I couldn’t explain it.
I even questioned the diagnosis of misophonia with my neurologist. “There is no specific term for the issues that you have,” she explained. “This is the closest diagnosis. It enables us to provide the proper codes to your insurance company for further testing and therapy.” But then the news became even more grim. She did not know of a rehab program in Minnesota.
So, the months passed and I suffered. I struggled to hold a ten-minute conversation, the cognitive confusion heightened by my issues with any sound above a whisper. My speech therapist encouraged me to expose myself to the noise of daily life, but I floundered with the task. Everything made me ill. Even with ear plugs in, walking down the street, buying a carton of eggs, or walking through a crowd of people left me nauseous.
It was three years after the accident when we learned of the Tinnitus and Hyperacusis Clinic. When I called and described my health situation, I was assigned an audiologist who treated patients with TBIs. At the initial appointment, I sat in a sound booth with headphones on. Reacting to the various noises using a silent buzzer, the testing process moved beyond anything I was familiar with. One test encompassed listening to different people's voices. It recorded not only sensitivity to volume, but when my cognitive confusion and nausea were triggered. It was then I knew I was at a place that understood at least some of my pain.
With every new treatment option I find, my husband and I face a dilemma. It is not a given that you will receive all the care you need after an injury. It is strongly tied to monetary flexibility. This instance was exacerbated by insurance – it would not cover any portion of it. In the end, we decided life could not continue the way it was.
My first therapy appointment included a discussion about my life goals. My ultimate objective was to spend time with my family. A total of eight, we had not all been in the same room together since the accident. I could not tolerate that many voices, even when they whispered.
The treatments began with exposure to white noise. It was remotely programmed into sound generators we bought for our home and hearing aids for my ears. We spent over a year increasing my exposure time and volume to the noise. Their experience with TBI patients had shown them that slow, incremental process was essential. By moving forward too quickly, the patient often went backwards.
After the year, I was switched to habituation training. It was repeated, controlled exposure to noise in a non-threatening way. I began by listening to a podcast for ten minutes. Then we added complexity, like washing the dishes while listening. Slowly, the exercises gained time and difficulty.
It’s been a couple of years now. I’m with the same doctor. I consider myself severely impaired and experience daily challenges. But the gains are there. My husband and I have spent up to thirty minutes at a couple of community events. We enjoyed part of a cabaret show. Most importantly, all of my family was in the same room for a solid hour this summer. Before therapy, I thought all of those were off the table for life.
One of the most valuable lessons was learning to anticipate my triggers. I have gotten stronger about vetoing activities that I know will make me ill. Massive crowds? Fairs? Theme parks? I understand now that those will no longer be a part of my life. There will be a limit to this journey. The exercises can take me only so far. But those gains force me to continue, tentatively testing my boundaries to see where that limit is.
Sara Scott, BIHN Contributing Writer
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