If you have read any of my previous posts you are likely aware of the painful and horrible experiences that I have had with doctors growing up. For those of you who have not read my previous blog posts, ever since I was little doctors treated my hyperacusis like a psychosomatic condition.
It took a 2 ½ for me to even get the diagnosis of hyperacusis, which offered me no protection from painful sound exposure treatments being forced upon me. For me noise feels like I am being stabbed in the temples and ear or beaten in the forehead and the sides of my head and I get horrible lingering migraines afterwards. Unfortunately the doctors and clinicians who should have supported and helped me manage my pain subjected me to everything from: play/fun activities to expose me to noise, to behavioral modification plans that were designed to have me participate in normal life activities that involved noise, therapy that assumed that my pain was phycological, and a 2 week hospitalization on a psychiatric ward with zero accommodations. The only thing these treatments achieved was causing my physical pain level to increase significantly and leading to me feeling miserable and in middle school even suicidal from the pain. I had to learn to fight for myself and do my own research from a very young age
My experiences are not unique, the majority of people with pain hyperacusis face clinicians who do not understand the physical pain, or noise related setbacks caused by this condition. This unfortunately results in patients frequently being harmed, put in severe pain, or experiencing permanent setbacks as a result. In the medical world doctors have certain conditions like: cancer, scoliosis, autism, blindness, deafness, cerebral palsy, flu, cold, etc hat they have heard of, know the symptoms to look for to make a diagnosis, and an established universal treatment or management protocol (that doesn’t harm or worsen patients.
It would have been so helpful for me and many other patients if there were such guidelines for clinicians to follow when evaluating symptoms, making diagnosis, and recommending or administering treatment or management options. I have decided that I am going to work to establish such guidelines.
How am I planning on doing this you ask? I am in contact with a staffer from the American Academy of Audiology who is going to connect me with their guidelines and strategic committee. Once in contact with them I plan to assemble a team made up of hyperacusis research scientists: Paul Fuchs, Fan-Gang Zeng, and Richard Salvi, as well as President Bryan Pollard from hyperacusis research to draft and submit clinical excellence guidelines for them to approve.
Due to the nature of hyperacusis, many patients are likely to also have interaction with: general physicians, neurologists, phycologists, ear, nose, and throat doctors, pediatricians, and occupational therapists. All of these clinicians will also need to be aware of and adhere to these guidelines when handling patients who report noise induced pain. In order to make sure this happens, after the guidelines are approved by the American Academy of Audiology, I would submit them for approval to the following Americain academies: family physicians, pediatrics, neurology, phycology, otolaryngology, and occupational therapy. I plan to draft and establish very thorough guidelines that would cover everything from: evaluation of symptoms, dignosises, noise/pain management, noise, setback prevention, mental health issues, children and adolescents, and much more. My hope in working to establish these guidelines is that I will protect other people with hyperacusis, especially kids, from having to go through the pain that I did.
Hyperacusis Awareness: Sound Sensitivity Treatment 
Thank you, J-T for all your fabulous and very important work. I, too, am hyperacute for sound AND vision for 22 years secondary to chronicneurological Lyme Disease and co-infections. And have used all the modifications you mentioned. Gratefully, foam ear plugs are helpful for me in reducing sound. As well as noise cancelling headphones. But it was years of medication and environment modification before my brain could tolerate the “white noise” of sound cancelling headphones.Luckily, after many years’ search I’ve found two MDs who treated me well for these complicated problems. They are a psychiatrist who has chronic Lyme-induced auditory & visual hyperacuities and works from her sound proof addition to her home. And a neuro-psychopharmachologist who has some understanding of our problems and prescribes a neuro-psycho pharm cocktail which has made it possible for me to tolerate some normal sounds, in small doses again. The 2nd MDis is a psychiatrist who understands these problems are not psychosomatic, but neurological in basis and uses psych meds off label for me. He sees hyperacuities through the lens of an MD who treats people with autism, believing they also have sensory hyperacuities. We went through a lot of meds. Trial, titrate, error, repeat until we found the right combo for me now. Like you, at my worst, I have lived in a walk-in closet for several months at a time, with just bathroom/shower breaks.. Gluing felt on the bottoms/around things that make noise can be helpful too. … Keep on truckin’. Carol
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