Hyperacusis Central thinks it is important to follow up on our patient stories. Today we highlight Scott Bailes (also known as Grayscale on Discord), who you may recall from several pieces on our website: Hyperacusis: Descriptive Pain Experiences; My Experience as a Parent with Hyperacusis and Tinnitus; A Positive Healthcare Provider Experience; The Toll It Takes: My Experience with Seeking Accommodation and Support Since Developing Hyperacusis and Tinnitus; and The Toll It Takes: Catastrophic Pain Hyperacusis and the Difficulties Presented by Constant Hearing Protection. Also the following piece: Scott’s Hyperacusis Story: I can no longer be a father to my children (Hyperacusis Research, 2022). You probably know him already, as we constantly get questions about what he did to get better and what he’s up to nowadays.
He was a well-known figure in the hyperacusis community whose loudness hyperacusis, pain hyperacusis, and reactive tinnitus were so excruciating that he wasn’t just hiding from sounds in a house, but also crippled by the tiniest ones, like a motorcycle at a quarter-mile distance while he was wearing ear protection. Such assaults set him back. While his pain was instant and delayed, it was mostly delayed. He also suffered mildly from light sensitivity (photophobia).
At one point his tinnitus sounded like a deafening beehive and got more aggressive and louder when exposing to any sound, even through single protection (earplugs or earmuffs).
“The first time I had tinnitus, I had six tones,” Scott explains. “It was a blanket of screaming banshees. The main one was an EEEEEEE, but I had static and other weird sounds.
“The second time, when my tinnitus went to moderate, it was a dozen or more tones, but they rotated every few hours. Usually four at a time. A foghorn, a Sonic-the-Hedgehog-collecting-rings sound, a Mario-collecting-coins sound, static, an EEEEEEEE, laser beams, sirens, etc.”
Now, Scott is working and coexisting with everyday sounds and rarely wears protection. He still has a tinge of these conditions, but they don’t interfere with most activities. His tinnitus is a quiet hiss and EEEEE, not reactive, and he usually doesn’t hear it. Given his former severity, his recovery is perhaps the most remarkable we have seen. But he doesn’t attribute it to luck or getting better naturally. After having these conditions for over four years, he realized he wasn’t improving by avoiding troublesome noises. Instead, he says addressing physical cofactors proved to be effective.
“Based on the Noreña model, I believe that hyperacusis can result from an otic symptom cluster that’s part of a broader syndrome consisting of comorbid conditions that affect and are affected by the ear through neuromuscular mechanisms. In other words, people may have an acoustic trauma or ototoxic reaction that impacts their body because these cofactors exist, and it leads to a cycle of unbreakable inflammation until they are addressed.”
He addressed his (bruxing, or constantly grinding his teeth, muscle imbalances and postural issues, and jaw-related problems associated with TMD—temporomandibular disorder) through a splint and physical therapy. He outlines his story and how he got better on his website (click HERE to view it). We encourage you to check it out.
Although Hyperacusis Central does not prescribe or condone specific treatments for sufferers—given this condition’s enormous tendency to manifest differently from person to person, including its response to varying treatments—we do put the information out there when someone gets better. Sufferers can consider whether it could help them. Hyperacusis Central wants everyone to know what their options are, and it’s up to them to listen to their bodies and make the best decisions.
*AI wasn’t used to write or edit this article.
REFERENCES
[1]. Scott’s Hyperacusis Story: I can no longer be a father to my children. Hyperacusis Research. 2022 Dec 13. https://hyperacusisresearch.org/scotts-hyperacusis-story-i-can-no-longer-be-a-father-to-my-children/.
[2]. Noreña AJ, Fournier P, Londero A, Ponsot D, Charpentier N. An Integrative Model Accounting for the Symptom Cluster Triggered After an Acoustic Shock. Trends Hear. 2018 Jan-Dec;22:2331216518801725. doi: 10.1177/2331216518801725. PMID: 30249168; PMCID: PMC6156190.
[3]. Hyperacusis Relief. https://hyperacusisrelief.freeforums.net/.
Congratulations, Scott! And Jarad, thank you for writing this follow-up piece.
I just checked out Scott’s website. It’s really well written and has a lot of helpful insights on treatment. I encourage everyone to take a look. The physical therapy component is of special interest.
On your website you state this:
“I have often seen people with severe cases of hyperacusis opt to hide in locations within their residence that reduces their noise exposure to the lowest level attainable. This usually means spending large amounts of time in enclosed spaces, such as closets or bathrooms. Some people even set up sleeping arrangements in these areas.
Many times, these individuals are left confused when their hyperacusis seems to worsen instead of improve under these parameters. Their logic seems sound: less noise equals less irritation of their ears, which should ideally facilitate healing. Unfortunately, because their hyperacusis is actually a neuromuscular condition with a major component related to postural issues, these types of spaces are non-conducive to healing.”
People are sleeping in closets because of H they don’t have H because of sleeping in a closet.
You just told everyone you never had bad Hyperacusis and have zero understanding of how progressive and reactive Tinnitus can be with bad loudness Hyperacusis. I am glad you got better but if you never experienced H that forced you to completely hide from sound you had a walk in the park compared to many cases. People are hiding to survive.
Google says: “For many, the major component is damage to the inner ear, noise trauma, rather than a postural issue. However, for those with severe vertigo or balance issues caused by sound, the postural component is major.”
Why is it that so many that get better seem like such blow hard egotistical types with anger issues and fake niceness??
I urge everyone to do what they can to try and promote healing but if sound is aggravating your symptoms protect from it
You clearly haven’t read my story on Hyperacusis Research, my many articles written or my many articles written on this website. Not have you have actually read in depth anything that I said on my website. It’s clear you gave some things a cursory glance and became triggered.
I literally never said every single case of H is a neuromuscular condition. All things I wrote are in regard to the potential for many cases to be neuromuscular in nature, which leading research that I think outlined on said site points to. Spare me your pseudo-righteous indignation.
You also have an extremely erroneous takeaway from what I said.
I never said people have H because they sleep in closets, lol. I said that the irritation caused to the neuromuscular component can perpetuate it. That doesn’t mean sound doesn’t also.
You seem like a troll. I’m guessing you’re affiliated with Travis. Maybe even his caretaker.
Ok, now that I actually have a moment, let’s shut down all the nonsense:
1. Google says is a nonstarter. I can literally prompt AI to tell me that Hyperacusis is a psychological condition and exposure therapy is the treatment—just the same as you got your answer above.
2. You cherry-picked one part of an entire article I wrote to misrepresent what I said in its entirety so you could go on your little tirade. That’s cute, but it’s obscenely obvious. I’m not even going to bother posting the summary section of the article here. If people want to read it, it’s on the site.
3. As I said before, you’re either a troll, or alternatively you have poor understanding of how academic research works and atrocious reading comprehension skills.
All causes of Hyperacusis are still in the theoretical stage as far as humans go. All the type 2 afferent nerve stuff, hair cell stuff, etc is in its infancy even now. There have only been tests in animal models. The only exception is actually Norena, who has tested various treatments for neuromuscular tinnitus such as botoxing the TVP. But the testing is still largely in the early stages. To my knowledge, he has not done any physical therapy studies thus far.
Academic research argues its theory, just as I did on my website. Your assumption that I think I’m the final authority on Hyperacusis because I used Noreña’s model to and expounded upon, detailing what worked for me, shows your lack of understanding of how theory operates and what I stated in various places.
3. Latching onto a single paragraph out of a fleshed out idea contradicting the argument you claim I make—while also ignoring the context of said article in regard to the entire body of work on the website—shows you are arguing in bad faith and employing logical fallacy (likely intentionally).
There is no need to engage further with you. Everything you said is vapid and baseless
I’m not trolling. I just wish I could be with my family and have some stability in my life. I’m suffering a great deal. You ego is very well established I see.
This community can feel very off-putting at times, and it often seems like people with severe cases are dismissed or shamed. Not everyone retains enough sound tolerance to pursue treatments or contiune. Catastrophic tinnitus can make simply surviving incredibly difficult.
Thank you for the clarification.
To say that my ego is well established is just more of your pseudo righteous BS.
My entire life was destroyed for 5 years by tinnitus and Hyperacusis.
I lost my career, my wife, access to my children for years. My ex-wife sold *all* of my possessions, threw me out and threatened to lie and sic the police on me if I didn’t leave in twenty minutes and lied to my children to tell them I abandoned them. My mother and father threw me away like garbage. My father made me homeless. This is all detailed in my story, but you didn’t read it, lol. The entire community has done nothing but crap all over me for trying to be an advocate and provide detailed info on how I healed and what could possibly work for them.
But I’m supposed to feel sorry for you and all your suffering, when you just summarily crap all over me and say I was mild blah blah blah. You’re all the same. A broken record.
I lived in a single room for two years. Everything hurt. When I sought treatment I got worse and worse. I got on a cocktail of drugs just to cope with the pain and spiking tinnitus. I was going to be homeless. I didn’t have a choice, lol. If your family is supportive and helps you be thankful. All I got was abuse, psychological, financial and even intentional sound assaults as a form of physical abuse.
Your ego is well established to think you know me. I hope you heal, but you can get bent.
I actually felt a need to come back and say the irony of you talking about toxicity in the community is palpable.
You’re the one jumping out the window making a bunch of crazy assumptions about my experience with this condition all while lamenting people doing it to you.
I think you may not have a single bit of self-awareness in your being. And you just keeping spewing wrong stuff, evading and then doubling down with more ignorant statements.
All while acting like now that I healed after my life was destroyed, I’m just doing dandy, lol. The after effects of this condition have completely changed everything about my worldview and my entire future going forward in all regards. I lost my father completely. My relationship with my mother now is only transactional in that since I’m not regulated to living in a single room and isolating 24/7, I can provide some caretaking for her. I still have issues with access to my kids because of being completely financially decimated by my ex and these conditions, while my ex married a wealthy simp who facilitates her BS related to my kids.
Like seriously you need to reevaluate your life, even as a sufferer. Your suffering does not give you license to tear everyone else down. You are actually the problem with the community. You seem to offer nothing positive. You haven’t mentioned any work you do for awareness or supporting others etc. you just run your mouth and lament your situation. And insist you can’t do anything but that and anyone who does must be in a better position that you.
News flash: what if you’re just not someone who is equipped to face this challenge in the same way as someone else, even—shocker—another severe sufferer. It’s easier to dismiss everyone else than to look within.
Do you think I held no accountability to myself when I put in the effort I did? That I just said, I can’t do this because xyz?
I had procrastinated on a lot of things and others I had been scared of in the past. While I had tried things, I had refused to leave home for fear of getting worse. But then I had homelessness hanging over my head and there was no nuance anymore. It was sink or swim. Everything I asked my dad to help me navigate, he refused. He turned his nose to my suffering.
You need to get a grip and so do the droves of people just like you. You all point fingers while being the actual problem.
A newly formed group, the Hyperacusis Collaborative Research Network (HCRN) has been established to investigate treatments that provide tangible benefit to people with hyperacusis suffering with sound-induced pain. The HCRN organising committee consists of neuroscientists Dr Arnaud Noreña and Dr Kelly Jahn; clinicians (ENT specialists Dr Michael Boedts and Prof. Claudia Barros Coelho, and myself, an audiologist); and 2 patients.
The patients, who initiated the group, and clinicians involved in setting up HCRN have found that tensor tympani syndrome (TTS)-focussed treatment approaches have achieved uniquely successful outcomes in treating this pain. These approaches arose from TTS research carried out in these patients by myself and by Noreña and his team. Scott’s recovery is another example of this approach.
HCRN aims to take a deep dive to explore, research and obtain evidence on these TTS-related treatment approaches, while remaining open to other treatments that have been effective.
HCRN is particularly interested in collecting data from people who have achieved, or are achieving, a full or partial, temporary or permanent remission in their hyperacusis and associated sound-induced physical symptoms.
People with hyperacusis affected by sound-induced pain and clinicians working with these patients are encouraged to join HCRN for information sharing and data collection by contacting: hcrngroup@gmail.com