Often in the hyperacusis community, we sufferers express our frustration with healthcare providers, when it comes to issues such as gaslighting, lack of accommodation, not feeling seen, heard & believed in relation to our lived experiences and unwillingness to experiment with treatments. Finding a good provider can be extremely difficult. In some cases, the search can present a major obstacle to those of us who are homebound, because each outing presents the risk of incurring a temporary setback or a permanent worsening of our condition.

Thankfully, there are providers out there that recognize we are self-aware and knowledgeable of our condition, try to accommodate our needs, seek to validate us and want to help us try to improve our quality of life. Today, I would like to relate a recent experience that helped renew my trust in providers.

I have a severe case of pain hyperacusis. I’m presently homebound and in hearing protection 24/7. I’ve decided that I am going to try and address some biomechanical issues that I feel may contribute to the severity of my pain hyperacusis. In my personal experience, bruxing and acid reflux have lead to both increased ear pain and heightened sound sensitivity for me. These conditions seem to feed off each other, with a bad day of refluxing leading to worse episodes of bruxism in my sleep. 

I have taken steps at home to address these issues, such as sleeping elevated on a wedge pillow, exercising, eating a reflux friendly diet, losing weight, doing myofascial release and practicing trigger point therapy. While these things have helped some, I feel there is still a lot left to be desired in the form of improvements.

Recently, I decided to find an orthodontist to discuss possible treatment options for my temporomandibular disorder — henceforth TMD — and malocclusion that fuel my bruxism. When I first contacted the clinic, they immediately told me they were not accepting new patients and would have to put me on a waiting list. I explained my medical situation, and asked the patient liaison if she could advocate for me by requesting an exception be made. She agreed and asked me to send over some details in an email to her. I was already fairly knowledgeable on what type of malocclusion I had, so I elaborated that to the orthodontist and included some pictures of my bite for review. The liaison quickly got back to me, and to my delight she told me the orthodontist agreed to take me on as a patient!

When I went into the office, one of the employees who oversees financing for orthodontics came out to go over some options with me. I explained to her that I wasn’t really at a stage where I felt reviewing those options was necessary yet, because I was unsure of how the orthodontist would react once I explained my pain hyperacusis in detail and the issues it presented with certain aspects of the treatment. She understood and assured me she would explain my situation to the orthodontist. She then talked to me briefly and related her daughter’s experience with sensory processing disorder that caused her to have issues with light and sound. I appreciated this because she tried to establish a connection and acknowledgement of disabilities and how they impact functionality, while also not downplaying or mischaracterizing my own issues.

A little while later I was brought into the clinic, and without even having to request it, they led me past all the open patient bays into a private room. The orthodontist quickly came in and she and her assistant got to work taking my history.

They were patient with me, letting me take my time detailing my issues and elaborating extensively where needed. They appreciated my preparation for the visit and knowledge of the procedures I would likely need — which ultimately included both orthodontics in the form of braces or Invisalign and jaw surgery. The orthodontist then acknowledged my condition by explaining where she could make efforts to accommodate me, and also gave a thorough explanation of what aspects of the treatment would absolutely require noisy tools. She emphasized how bone conduction would be an issue, which I had figured. She then pointed out the risk that the movement of my teeth could present pain and irritation that may worsen my hyperacusis symptoms, and there were no guarantees of recovery from the worsening, or general improvements from my current baseline. 

Next, she told me she would like to form a team to handle my case that included an ENT, audiologist, maxillofacial surgeon and a psychologist. She offered to handle the referrals for me and said we could conduct our communications by email so I didn’t have to use a telephone. I was so grateful for that, as artificial audio gives me some of my worst pain.

I let her know that I was also looking into addressing TMD with a dentist who specialized in it. I explained that I presently felt I couldn’t undergo treatment with her because I was too severe, but that I hoped to possibly improve from the dentist’s TMD treatment approaches to a level where I could proceed in the future. She understood and agreed this would likely be the best route to take.

I left her office relieved by how well she and her colleagues had made everything come together, and look forward to getting everything in order with the other members of my treatment team, so that I can hopefully proceed with things in the near future.