Fund for Hyperacusis Therapy (TRT)

Dimitra Yaou is organizing this fundraiser.

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In January of 2014 I was hit and diagnosed with the auditory disorder hyperacusis (a collapsed sound-tolerance) to accompany the other auditory disorder I already had for about a year called tinnitus (constant ringing in ear). My tinnitus took the backseat to the hyperacusis, and my life became a lot more difficult.

I was finishing up my last year of college at the time and school was a struggle because normal environmental sounds would cause pain to my ears. The pain that I experience is not just like an acute pain in the ear, it can cause burning in my scalp and neck as well as migraine like feeling in my head. This pain can last multiple days from just a single event. I took precautions when leaving my house by wearing earplugs, and sometimes protective earmuffs also. I often had to walk out of class (sometimes run), when the noise level was too loud. This could be from a video with the volume too loud, or even just students having a discussion. I constantly had a dosimeter (an instrument that measures sound levels) running while in class to monitor the sound. Yet somehow despite all the odds against me I graduated in December 2014.

During that time I had seen multiple doctors, and sought out multiple sources to inform and educate me as much as possible about this auditory disorder that which had taken nearly every ounce of my quality of life away. I learned that there is only one form of effective treatment for people who suffer from hyperacusis, TRT.

The progression of hyperacusis is unpredictable. Many patients' tolerance improves while some cases grow steadily worse. The only factor that is known that unquestionably affects progression or regression of hyperacusis is continued exposure to loud noise.

"Many patients have seen improvement in sound tolerance through the use of sound generators that emit broadband pink noise. This retraining therapy suggests that the ear will become desensitized to sound by listening to broadband pink noise at barely audible levels for a disciplined period of time each day (usually 2-8 hours a day). This has been proven to help over 90% of hyperacusis patients maximize the tolerances in their ears. The name of this treatment is called Tinnitus (hyperacusis) Retraining Therapy or TRT.” (The Hyperacusis Network )

There is only one doctor/audiologist in Illinois who specializes in this therapy, and now after it has been a little over one year of this roller coaster that I have been trying to recover from, I have finally been able to see her.

While I have seen some improvement since this time last year I also have brought upon having phonophobia (fear of loud sounds) on myself as well because of the hyperacusis I suffer from has really taken on a limbic system approach. This is why I can no longer depend on myself to follow the guidelines of sound enrichment to “recover” on my own.

TRT is the only hopeful and effective treatments for this "incurable” disorder, and unfortunately TRT is not covered by any insurance. This therapy can take up to 12-24 months, and the sound generators alone that I would need to purchase are about $3,000 (for the pair, one for each ear). The other component of TRT that is essential is counseling, since it also involves your limbic system, and can be worsened and exaggerated psychologically. These visits will be another $1,000 or so. In toal this would be costing upwards of $5,000.

This year has been incredibly hard, I have cried more than I have cried ever before, and I have battled depression because of this drastic change of my life. I have battled being sick and not being able to take medicine - in the fears that the medicine would be ototoxic and make my ears worse. There have been times I wanted to just give up, but I didn’t. I am here, I am still fighting strong, I welcome progress, but hate the setbacks and flare-ups with my ears. I want to not have to wear hearing protection to wash dishes. I want to be able to ride trains/buses/planes again. Or even be able to ride in a car without hearing protection. With warm weather comes construction sounds, noisy cars, and motorcycles, all of which are very harmful to my ears at the moment and one event could cause me to be in excruciating pain for days. I want to be able to walk down the street without fear that something will cause pain to my ears. I want to get back to a level of sound tolerance that I don’t need to wear earplugs every time I step out my front door.

^ I wear and carry these with me daily.

I am now starting a new chapter in my life; I am willing to do anything in my power to try whatever I can to get my “pre-hyperacusis" life back, and this means to try and fund my TRT expenses.