HYPERACUSIS CENTRAL

Hyperacusis 101: A Question and Answer Session with J. D. Rider

by | Sep 19, 2023 | Awareness | 3 comments

If hell won’t die or dissipate, a horrid place of agony, of vile loss and misery, of monumental treachery, will thrive and reign so faithfully. She’ll roost upon our graves — a beast called noxacusis.

By J. D. Rider

***The opinions expressed are J. D. Rider’s, a victim of hyperacusis, and do not necessarily reflect those of Hyperacusis Central. This article is not intended to be a substitute for professional medical advice, diagnosis, or treatment. You should contact your own physician or other qualified health care provider with any questions you may have regarding your medical condition, and we encourage you to discuss this content with them to avoid improper treatment. Relying on information provided by this content is done at your own risk.

When sound itself is kryptonite, your greatest foe and allergy, this realm is so oppressive. It’s not like planet Earth. It’s more like Mars or something else — a distant land of suffering, so evil and calamitous and rotten to the core, as sound is fully sovereign, deep inside the framework. It plays like scary movies, jumping through a flashy spell or screen of many colors. We watch and feel paralyzed, peeking through our fingers, as noise — like a slasher — hunts, taunts, and then destroys, killing everything. It reeks of death and crazy books, though sadly, it’s for real — a bear that mauls your fragile ears, and also this reality in every single way. Some may read this cautiously, taking real heed, and some may not believe it, but let me truly clarify — these words are not hyperbole, but boy, I wish they really were. This hell on planet Earth, it’s called noxacusis: when sound is super deadly; a poison paradox. Make no mistake about it.

When it comes to health afflictions, the patients are the experts, plodding through their maladies and learning how to navigate — living through it all. For Parkinson’s disease, Michael J. Fox shared a similar statement, and it’s equally true for hyperacusis. They know what hell is like — the ones who face it daily — and only those who’ve seen its wrath can fully understand. With that in mind, J. D. Rider answers the most frequently asked questions about hyperacusis, funneled through his point-of-view. He’s been a patient for twenty years, sadly.

One of our many goals at Hyperacusis Central is spreading awareness. This strange condition is frequently plagued by qualities that vary, with different forms and many subgroups, causing mass confusion. And its nature is so shapeshifting that it’s profoundly resistant to simple explanations. So we aim to change that.

***The opinions expressed are either gathered from common testimonies of hyperacusis sufferers or medical research, and are cited accordingly.

What is pain hyperacusis or noxacusis? 

Pain hyperacusis: when someone experiences physical pain to levels of noise that are generally benign for most people, or considered safe and not loud by most individuals; potentially, it can vary from mild discomfort to severe and also encompass a wide range of symptoms, such as delayed pain or instant; the frequency of sounds can also play a vital role. Also known as noxacusis, this condition is different than loudness hyperacusis, as the painful facet of sound is the attribute that sets it apart from the other one.

What does it physically feel like?

The puzzling nature of pain hyperacusis is often represented by the fact that it manifests itself differently among sufferers, but their common denominator is pain nonetheless. Some feel stabbing sensations that are instantaneous to sound, such as myself. And once the sound is over, the pain is, too. Often, louder sounds will undoubtedly trigger significant pain, while quieter ones will cause less pain. But this factor can also be a variable affected by the frequencies of sounds, and some frequencies may not cause any pain. So it’s also possible for lower sounds that are different frequencies to cause more pain than other ones. It’s very individual and doesn’t always affect people the same way.

Personally, I feel instant stabbing to a lot of sounds, and then a sandpaper-like, abrasive sensation to lower ones. Almost all frequencies bother me. If I can hear it, there’s pain. Oftentimes, the lower frequencies are different, causing feelings of deep compression and squeezing in the ears, as if the soundwaves themselves were inside the ears defiantly, wrapping their full weight around the nerves or muscles or cochleas, trying to tear them apart. For instance, I have a neighbor who’s about two football fields away. He cuts his grass with a large, industrial-grade tractor and I’ll feel that sensation, even when I’m inside my own home with ear protection on. To combat this, I strategically move to a part of the house that blocks the noise better. Ear protection lowers the pain to a certain degree, where the levels won’t cause me a setback or worsening. A higher frequency sound — like a sharp, piercing train horn, a quarter-mile away, or even a police siren — causes deep, stabbing pain. 

Others can also feel stabbing pain in delayed form. Exposure to noise can ramp their symptoms up, where the exposure itself doesn’t feel painful at the time, but does later on. They’ll feel deep, persistent stabs throughout their inner ear as time progresses, and it can carry on for long periods — days or even weeks. Some describe this suffering as tendinitis or migraine-like, but coming from the ear itself, with levels of pain that vary widely, mild to catastrophic. 

When pain is delayed, it can sometimes deceive a sufferer for one sole reason: it provides a false sense of security for the safety of sounds, as the pain is only generated at a point that far exceeds the actual time of exposure. So even though a sound feels safe, that doesn’t mean it is. Under the guise of safety, damage can happen.

Another common symptom of pain hyperacusis is burning. This can also be mild, moderate, severe, or catastrophic. And the burning can also be instantaneous or delayed.

A lot of victims of pain hyperacusis often report that tinnitus is joined at the hip with their disorder. Sound exposures will lead to significant spikes in ear ringing, where it becomes louder and more aggressive.

Occlusion also bothers some. When wearing ear protection, sounds inside their head will be louder, like chewing, swallowing, breathing, and coughing. Well, I myself can’t handle that — the pain is too much. So wearing protection and eating simultaneously are out of the question, though others do okay with that.

All in all, the befuddling nature of pain hyperacusis, or nox, is so vast, so elusive and shapeshifting, that some may experience other anomalies, too — unique symptoms that are very individual. And sadly, that makes the struggle even worse.

What is loudness hyperacusis?

Loudness hyperacusis: where the gain for sound is super high; in other words, the acoustical stimuli of sound is much louder than average.

What does it physically feel like?

Whispers are more like yells, for example, and plastic bags like monstrous bulldozers rummaging around. The pain factor, however, is missing here. Slight discomfort is possible, but not the extreme stabbing or burning that’s present with pain hyperacusis. When a bothersome noise happens, some describe the feeling of wind rushing through their ears. And it’s not delayed, only instant.

How rare is hyperacusis?

Extremely rare. It’s likely one of the rarest conditions in the world, it seems, when it comes to loudness hyperacusis and pain hyperacusis specifically. And there are different theories for why that is. I personally believe it’s rare because it’s gene-related (I expand on that further in the “What causes hyperacusis?” question). Though it’s pure speculation, it seems so logical, and that’s why most people can do whatever they want and not get hyperacusis, as if they’re not at risk. That’s the idea, at least.

It’s so rare, in fact, that only a small facet of society will ever cross its path. To say that victims of hyperacusis are unlucky is really an understatement. Uncharted territories dominate their world; things of great atrocity that paralyze the landscape, but most mere mortals dodge the beast, evading all those scary grounds — rocky and sour grounds that tragically spite the creation itself. 

Though it’s rare, my estimation is generous, allowing two-hundred people total for every million to have either pain hyperacusis or loudness hyperacusis. However, the number is likely much smaller than that, especially for severe levels of these conditions. In a city of one-million, for example, there are only two known cases of severe noxacusis — myself and another individual in Columbus, Ohio. 

I’m part of communities that span the entire globe, and that trend pops up everywhere I look, where a couple per million are battling what I’m battling — a level that’s severe. The infamous one in fifty-thousand stat is wrong, in my opinion. And actually, it originated on an internet message board years ago. It’s not medically proven, though my stats aren’t either. I’m just going off first-hand accounts and the logical data available.

Hyperacusis Central recently conducted an interview with Dr. Kelly Jahn, who’s planning to study the prevalence of noxacusis. To see that interview, click below.

Dr. Kelly Jahn on Noxacusis Research: “We Feel That Nothing Compares to Learning Directly From Patients Themselves”

What causes hyperacusis? 

This condition is often caused by sound abuse or loud noise exposures, or ototoxic medications, or head concussions, even. Despite the cause, it’s rare to get hyperacusis, as I’ve outlined already. Nevertheless, what’s going on mechanically is still a mystery, whether it’s the ears or brain that cause it, allowing it to fester and thrive. Some believe it’s middle ear-related, where the muscles are acting up and also have inflammation significantly. The tensor tympani muscle protects the ear, but its mechanical performance can also torture the body, overprotecting the ear with violent contractions to sound or even the anticipation of sound, conjuring pain. Noreña et al. propose that it’s really the tensor tympani muscle, trigeminal nerve, and trigeminal cervical complex that work together in negative ways to bring about the cycle that leads to hyperacusis (Noreña, Fournier, Londero, Ponsot, & Charpentier).

Another origin theory for hyperacusis involves the type II afferents (The Hearing Health Foundation). These auditory nerve fibers are found in the cochlea, tied to the stimulation of outer hair cells and, among other things, the formation of synapses. Theory goes, these nerves are damaged in hyperacusis sufferers, causing them to feel pain with sound.

Brain injuries are also blamed for hyperacusis. It’s widely known that head concussions can cause it, though the mechanics behind that are still mysterious. Our relationship with reality is often swayed by the brain. A physical injury to this organ could feasibly cause auditory disturbances.

When it comes to sufferers, I think that future researchers need to focus on genes and what sets us apart from most people. In fact, a gene called connexin 26, or Cx26, may be responsible for some people’s hyperacusis. Gene mutations of Cx26 can conjure hyperacusis, as published in Science Advances. The findings of Liu et al. proved that heterozygous deletion of Cx26 in mice caused hyperacusis. This gene is also known to cause deafness (Tawk & Abouzari).

However, some are convinced that hyperacusis originates from other things. A lot of people believe “the actions equals causation theory,” a term I personally coined. Basically, it means you did too much in life and caused hyperacusis to form. Maybe you abused sound a lot or medications, but that doesn’t explain why some people got hyperacusis, as they didn’t do those things in abundance. I personally lean towards the genes theory, where you did the same as most people but your ears couldn’t handle it like most can. I think that’s true for some people at least. From conception, maybe their ears were weaker than most. Of course, there are exceptions. Not everyone’s the same. Some do overdo stuff. It’s very possible that vulnerable genes allow noise and meds to damage ears much easier, though, in my opinion.

I think if “the actions equals causation theory” were primarily true, the occurrence of hyperacusis would be much higher. There’s a missing piece of the puzzle in genes, I believe. For severe noxacusis, or pain hyperacusis, the handful for every million stat demands critical thinking; specifically, asking why a tiny amount of people get hyperacusis when they essentially don’t behave any differently than most people do. I know so many people who really did far more abusive stuff in life and have zero ear issues. 

One example is an individual who fired guns a lot with no protection; went to concerts and bars a lot; used headphones for work and recreation; smoked cigarettes and marijuana for twenty years, and used street drugs, too; drank alcohol regularly; used antidepressants for years. And this individual has no ear problems. For me, however, my tinnitus and pain hyperacusis were caused by acne face pads with salicylic acid at age seventeen. And then turmeric (a herb), tea tree oil gel, and colloidal silver gel — along with low-level sound therapy — worsened my condition much further in 2021. Such normal things were my undoing, which begs a simple question, “Are genes to blame for this?” It certainly seems so, as if I were just vulnerable when others really aren’t. I committed misdemeanors in life and now I’m serving a prison sentence in Alcatraz times ten. What can we draw from this madness? Ultimately, the genes theory argues that Earth is NOT too loud or toxic for people in general, but rather, that it’s too loud or toxic for us and our genes — the people who have a predisposition for hyperacusis. Their genes imprisoned them.

Some people also hypothesize that hyperacusis forms when a perfect combination of cofactor issues collide with sound trauma or medication ototoxicity. This theory was hatched by Noreña et al. initially, and was later explored by actual sufferers. For example, some sufferers find that neck or jaw issues, or TMD — which stands for temporomandibular disorders, affecting your jaw joints and muscles — can exacerbate hyperacusis in rare cases. And furthermore, postural problems can, too — how you stand or hold your neck (Noreña, Fournier, Londero, Ponsot, & Charpentier). According to some, even acid reflux can worsen symptoms. Potentially, stomach acid can travel to the middle ear and cause or worsen tinnitus. This process happens through the esophagus and round window membrane (Geng). Therefore, it’s also believed by sufferers that hyperacusis could be affected by acid reflux, too. So if cofactors are somehow linked to one’s disorder, addressing them can theoretically help.

Some people also describe their hyperacusis as neuralgia-like, denoting nerve pain. This type of pain occurs in the face or head and radiates along the nerve. Trigeminal neuralgia, known as the “suicide disease,” is what they often reference. According to Cephalalgia, an international headache society and journal of headaches, this neuralgia is truly responsible for twenty-five percent of suicide attempts in forty-eight countries (Trejo-Gabriel-Galan, Aicua-Rapún, Cubo-Delgado, & Velasco-Bernal). In the face, the trigeminal nerve is fire-like, experiencing extreme pain and electrical sensations. However, it’s also a lot more common than hyperacusis alone. There are ten to fifteen-thousand new cases diagnosed yearly for trigeminal neuralgia, so its prevalence is much higher (Yale Medicine).

What are setbacks and worsenings? How are they different?

A setback is usually when someone has a noise encounter or medication reaction or something that temporarily worsens their symptoms for a certain amount of time. The word “setback” implies that it’s really not “damaging” enough to cause permanent harm. People often recover from setbacks by isolating in silence or stopping a medication or avoiding the trigger. But permanent worsenings are also possible. Once they exceed a certain timeframe, they prove themselves to be permanent, unless the sufferer can heal down the road. For instance, the last time I took a somewhat normal shower with ear protection on, it caused permanent damage. For a year now, I haven’t been able to tolerate whispers well. So I know it worsened me.

Will overprotection hurt you?

When talking to hyperacusis sufferers, the consensus is no for pain hyperacusis. For loudness hyperacusis, people report different results about this topic. Pain hyperacusis benefits from sound avoidance, according to most, so it stands to reason that overprotection wouldn’t hurt. With loudness, however, some feel sound stimulation is necessary. So this matter is really something to explore cautiously. Everyone is different.

Can you describe “the quicksand stage?”

“The quicksand stage” is an unofficial term that I personally coined. It describes a rare breed of catastrophic hyperacusis, where the soundscape of this planet — like quicksand — “swallows” a person more or less, becoming so dangerous, so detrimental to a sufferer, that they sadly keep worsening more and more, despite their greatest efforts to be safe. They’ve hit a downward trend. And sadly, there’s no looking up … only down. Even ear protection fails to help them often. It only delays the inevitable.

Sound becomes an evil aggressor in life, a hell beyond measure, and a force to be reckoned with. Since noise is faithful and sovereign in life’s construct, I often say that these individuals are at war with the universe itself. In the form of sound, a sacred pillar of existence, the ark of life — planet Earth — took up arms against them. And now, survival is the feat of all feats. When every sound in life is your enemy, it stifles the creation. Hell is what you’re facing: abysmal realms of pure detention. “The quicksand stage” is awful. You’re walking on bedeviled grounds that most have never seen: a war with the very fabric of creation.

Will hyperacusis kill you? 

No. It has no sway on mortality. No matter how bad it gets, it will never kill you. It does cause people to commit suicide, though.

Why does hyperacusis worsen more and more? Can you always get worse? Are there limits?

To answer the last question first, no. This is unfortunately true for a lot of sufferers: it can always get worse. It’s not like Dante’s Inferno with nine circles of Hell. There are endless circles here. As for why, that is unknown. I suppose the injured area is getting more inflamed, and therefore causes hyperacusis and tinnitus to keep worsening infinitely. And it’s scary because neither will ever kill you, no matter how bad the torture gets. They can murder every aspect of your life except the fact you’re breathing … literally. The worst sufferers are hiding in windowless rooms with ear protection on for the rest of their lives, as every little sound is beyond soul-crushing — they’re painful to the nth degree.

When someone seemingly improves or “heals” from hyperacusis, are they truly healed? 

“Healing” is not a good word to use. It’s more like you’re in remission symptoms-wise, but the condition itself is still there at the same time, and could sadly return if you’re not careful. Oftentimes, you’re never out of the woods, even if you’ve seemingly “healed.” It’s always like a volcano waiting to blow with one wrong move. It may be dormant for the moment, but never assume it’s gone. I was super mild after recovering from moderate in 2008, but turmeric — a measly herb — blew my Mount St. Helens to hell and beyond in 2021. And since then, I haven’t been able to stop the flow of magma and horrendous heat. 

Other sufferers have also shared similar stories, where improvements deceived them. They thought they were safe, but like a game, wrong moves at chess showed otherwise, allowing the demon to return. Unfortunately, it doesn’t take much. Another example is an individual who went to a record store that was only 55 dB or so, but it reignited his symptoms and the doors of hell reopened. Once you get hyperacusis, it’s best to assume that lifestyle changes are in order to preserve what you have forever or to promote more healing.

Will people improve in two years? I see that number a lot.

We can’t say for sure. It’s very individual and case-by-case. Usually, mild or moderate levels do better when it comes to quick improvements. That two year figure often coincidences with those stories, or for people who experience hyperacusis for the first time. Remember though, when you do improve, you’re in remission — you’re not “healed.” You’re still susceptible to reinjury. 

Some people say that five to seven years can even bring improvements. It’s also been noted that severe or catastrophic cases saw symptoms abate over that time period. So not all hope is lost.

Is reactive tinnitus really a subgroup of hyperacusis?

Many believe it is. Reactive tinnitus is when your ear ringing is sensitive to sound. So it makes sense to say it’s truly hyperacusis-like. A lot of people in life have tinnitus. The National Institute on Deafness and Other Communication Disorders has conducted research to conclude that ten to twenty-five percent of people in the United States have tinnitus (NIDCD). However, most of these individuals experience milder, stable forms of ear ringing. Reactive tinnitus is the very definition of unstable when it comes to this condition. Exposure to sound can worsen it mildly, moderately, or even catastrophically for some. And sometimes it’s permanent — the new worsening won’t go away. That’s not normal tinnitus.

I know a lot of people in life who have typical tinnitus — the stable kind. They continue to live unscathed and expose to loud noises, but it never worsens their ringing: people who cut grass, for example, without any ear protection; or go to concerts often; or even fire guns; things like that. Theory is, reactive tinnitus is really a form of hyperacusis, which means the person who has it is sensitive to sound in ways that can potentially limit them horrifically.

Why do some people with hyperacusis have zero tinnitus?

This is unknown. But it’s likely that different parts of the ear are damaged, thus producing different symptoms. That’s why ear injuries are very individual, too, in my opinion. The ear is so exceedingly intricate with a vast amount of parts. It’s also possible that each person’s brain responds differently to ear trauma, and when hearing loss happens, the brain supplements that loss with a phantom sound known as tinnitus. That’s the theory. But it’s also known that a lot of people with hearing loss have zero tinnitus. And it’s completely possible that gradual hearing loss — which happens as we age — doesn’t shock or hit the brain the same way as a trauma, with sudden hearing loss. And therefore, maybe tinnitus doesn’t form for that reason.

Sometimes, tinnitus is joined at the hip with hyperacusis, as if the two were brothers, or sisters on the warpath. In those cases, the aggravation of symptoms will often lead to a spike in both tinnitus and hyperacusis. It’s very individual, though, which makes it so befuddling.

What is phonophobia?

When someone fears sound, we call that phonophobia. 

What is misophonia?

When someone has unusually negative emotions to sound, like hatred, we call that misophonia.

Are there any treatments for hyperacusis?

There are no proven treatments for pain hyperacusis. Sufferers often say that doing nothing and hoping that time would yield improvements allowed beneficial results. Though oddly, some never get better.

Some sufferers say that low histamine diets can help pain hyperacusis that’s middle ear-related. That is not proven, however. Theory is, though, that the low amounts of histamine reduce inflammation, allowing the middle ear to recover easier (Younkin). And some sufferers say that medications like gabapentin help to combat pain. But sadly, some also worsen from these medications. When it comes to hyperacusis, there’s no strong data or numbers that are truly supportive or suggestive for their possible efficacy.

Loudness hyperacusis sometimes responds favorably to sound therapy. For more information, see the next question, which covers sound therapy in-depth.

Is sound therapy safe?

For pain hyperacusis, most sufferers say no. They had adverse reactions or worsened permanently. Generally, sound avoidance is the go-to method. For loudness hyperacusis, sound therapy can help sometimes, per the testimonies reported. This information was gathered from hyperacusis support groups that span the entire world, where victims share their stories. There’s a Discord group for this condition and people congregate. Some of the worst cases of pain hyperacusis are keen to make their stories clear: that sound therapy was detrimental, saying it permanently worsened their condition.

Now, let’s look at the roots of sound therapy. Pawel Jastreboff, ScD/PhD, is affiliated with the Emory University School of Medicine. TRT, also known as Tinnitus Retraining Therapy, was Jastreboff’s creation — first, for tinnitus habituation, and later, the treatment of hyperacusis through gentle sound stimulation. In theory (his claims), this allows a person to rebuild tolerances lost from hyperacusis (Plural Publishing Inc.). However, it often backfires for people who try it, especially with pain hyperacusis. They listen to white noise or pink noise through white noise generators (WNGs), small devices that sit inside the ears, and many worsen, sadly.

I think the misunderstanding stems from the fact that Jastreboff doesn’t separate the different subgroups of hyperacusis. In his world, hyperacusis is hyperacusis — plain and simple. He simply categorizes hyperacusis into four levels to denote severity. Though in his eyes, loudness H and pain H are one in the same. But really, they’re two completely different things, requiring different approaches. By treating pain with sound therapy, it’s almost like sending people to the slaughterhouse. Oftentimes, they worsen horrendously.

Sadly, I can relate, too. I was given bad advice from an H community that also believed in the Jastreboff playbook — that all hyperacusis cases are one in the same. I tried sound therapy for pain and it permanently worsened me. Had I not taken their advice, I’d likely be mild right now from a natural recovery (avoiding sound with silence). However, by not doing so, a downward spiral of hellish wrath has taken me to evil realms, where life is decimated. And now I’m forced to isolate, hiding from all sound. If I don’t, I’ll worsen more.

The link below is medical literature on Jastreboff’s protocol, but it never mentions pain as a symptom of hyperacusis (Gold). “Pain” was not established publicly and properly until Bryan Pollard founded Hyperacusis Research in 2011. For more information, see the question about Bryan Pollard.

Click here to read about Jastreboff’s protocol.

Also, there was a recent study published that delved into the topic of sound therapy for hyperacusis — “A Phenotypic Comparison of Loudness and Pain Hyperacusis: Symptoms, Comorbidity, and Associated Features in a Multinational Patient Registry,” published in the American Journal of Audiology. In that study, eighteen percent of people with loudness hyperacusis worsened from sound therapy, and twenty-eight percent with pain hyperacusis did, too. And they also found that tinnitus worsened for many of these people (Williams, Suzman, & Woynaroski).

What is CBT, or cognitive behavioral therapy?

CBT, also known as cognitive behavioral therapy, is a protocol used for psychological treatment. Potentially, anxiety problems and depression will benefit from CBT, among other psychological disorders (The American Psychological Association). When going to doctors or audiologists, hyperacusis patients are often prescribed CBT since no other avenues are available for treatment. They have a real physical problem (hyperacusis), which causes great distress. Problem is, though, some people’s symptoms are so bad that all the mental gymnastics in the world won’t help them. So sometimes, a huge wall is sadly thrown up between doctors and patients, as the doctors don’t understand when patients make that clear. Some can mentally benefit from CBT, but the effectiveness and dogmatic abuse of CBT is a constant tug-of-war that often clouds the thinking of medical professionals.

A lot of hyperacusis sufferers have lost everything. Their tolerances are so low that they’re basically incompatible with most facets if life, even simple things, like bathing, talking to people, and leaving their homes. Sound is so sovereign in life that it’s truly catastrophic beyond measure to be allergic to it. When every little noise is a force to be reckoned with, and can also worsen them permanently, CBT doesn’t offer anything to change their grim reality.

Will hyperacusis ever be cured?

I certainly hope so, but it might be far into the future. My rational fear, however, is somewhat pessimistic — that the world won’t care about its wrath and won’t pursue a cure (any time soon at least). And that’s why the work we do is really important. Hopefully, we can change that. We have the power to try at least. But my fear really stems from the rarity of hyperacusis. What happens to us doesn’t happen to people in the big scheme of things. We’re exceedingly rare. 

We’re so rare, in fact, that there’s really a greater chance of being struck by lightning — one in fifteen-thousand (National Weather Service). People won’t worry about hyperacusis for that sole reason — the rarity or chances. And you don’t see people worrying about lightning either, do you? Well, there’s your answer. They don’t need to worry about either, because the possibility of either occurring is so slim that it doesn’t warrant the need. For the people it does happen to, they’re just written off as causalities in a world that’s occasionally so tragic that it’s beyond their grasp or measure. That’s my biggest fear. I truly hope I’m wrong, though. 

We need to work to change this. According to NORD, the National Organization for Rare Disorders, there are seven-thousand rare diseases on this planet and ninety percent have no FDA-approved treatments. But not only that, they hardly get any funding either (NORD).

Is anyone currently researching hyperacusis?

Yes. Megan Beers Wood, Ph.D., is funded to study hyperacusis by Hyperacusis Research (The Hearing Health Foundation). There are also other researchers around the world, such as Noreña, who was mentioned in the “What causes hyperacusis?” question. Hyperacusis Central also interviewed Dr. Kelly Jahn recently, who is also researching hyperacusis. To read that interview, see below. Jahn said, “We feel that nothing compares to learning directly from patients themselves.”

Dr. Kelly Jahn on Noxacusis Research: “We Feel That Nothing Compares to Learning Directly From Patients Themselves”

Why is persecution such a common theme with hyperacusis? No one seems to understand it or believe it.

There’s a few reasons why this happens. First, the rarity of hyperacusis means that most people have never heard of it, even doctors. In fact, most will never meet a hyperacusis sufferer in their whole life. Ironically, I met someone who had hyperacusis long before I did — my stepdad. He was mild. It was pure coincidence. He said construction work with loud jackhammers caused it.

The second reason why people are unsupportive so often is simply because they fail to comprehend or just don’t understand. A lot of times, people have to experience something first-hand, especially when it’s not a well-known disease or illness. They’re used to sound. They have a peaceful relationship with noise. They habituate to most of it. So for them, it’s in the background. With hyperacusis sufferers, sound is in foreground, causing total mayhem. Think of it like two-dimensional and three-dimensional worlds. For healthy people, sound is two-dimensional and doesn’t pop out or intrude on the precious space or matter they reside in. With hyperacusis people, however, it’s three-dimensional. It’s taking up space in their world. It’s not just audio — it’s a feeling … and a painful one at that.

The third reason why people are unsupportive: they compare hyperacusis to well-known diseases. For the life of them, they can’t understand how an ear disorder could be so awful. They often compare it to other diseases and think hyperacusis people have it easy. I’ve experienced that and others have, too. It’s routine. I often tell people that hyperacusis is a very unique illness because it not only affects your body, but also the nature of reality itself. Since sound is everywhere, the entire planet becomes an inhospitable place. It’s a two-fold experience — your body and the world. Your body is rejecting the world. A peaceful relationship with life becomes impossible, but it never kills you. So you’re stuck inside a paradox. 

And also, let’s be honest: when you tell someone that a tractor causes you significant ear pain that’s two football fields away, even while you’re inside your house, that seems unbelievable, even though it’s true. Really, hyperacusis is plagued by suffering and loss that’s truly unparalleled. That type of hell, most will never see. Every day and every minute, a person with hyperacusis is fighting something that most people spend zero days and zero minutes fighting — sound. So of course they don’t understand. How could they? It’s weird, though, because authors conjure up stories that are total fiction and sometimes fantastical, and people can immerse themselves into those worlds and even feel stressed or frightened by them. I’ve had a lot of people tell me that my articles do that, but even so, they think it’s unlikely to happen to them, as their ears are always reliable. However, if they can understand books or use their imaginations, why can’t they do the same for us? Unfortunately, sometimes people are complicit in that ignorance or, in other words, refuse to understand. 

It’s also paradoxical for other reasons. For example, doctors who lack knowledge about hyperacusis can be dangerous. Since they’re inexperienced, they offer bad advice that can permanently harm someone. This happens all the time with hyperacusis folks. Society teaches us to trust doctors. However, everything about hyperacusis runs contrary to conventional wisdom and thinking. You have to become your own doctor, sadly, unless you can find a good one.

Who is Bryan Pollard?

Bryan Pollard, who passed away in May of 2022, was the patriarch of noxacusis, a term created to differentiate pain hyperacusis from loudness hyperacusis. Sadly, he also experienced noxacusis, caused by a loud wood chipper. He was also the founder of the nonprofit Hyperacusis Research, and was able to shed new light and awareness on noxacusis by attending a conference for the Association for Research in Otolaryngology, educating many and opening doors to allow acceptance for a condition that was previously shafted (Yishane). His wisdom and candid talks were so instrumental in revolutionizing the understanding people have about hyperacusis. When it came to ideologies, Bryan was a pioneer, paving the way for newfound information to take hold and forever change the landscape of hyperacusis. He went against the grain or preconceived notions; specifically, the correlation of sound exposure with risk factors. He stressed that noise could undoubtedly harm a noxacusis sufferer, and that overprotecting the ears was okay. Prior to this, people insisted that overprotection would definitely worsen the condition. He also talked about setbacks in-depth and how they affect noxacusis. He wrote about these conditions a lot and was able to bring pivotal change to the world of hyperacusis.

Are earmuffs or earplugs better for protection?

The answer to this question is very individual. Some will say that one or the other will cause more or less occlusion. Some use both simultaneously. And it’s also important to make sure you’re inserting earplugs properly. Comfort levels are different, too, for each individual. Not too long ago, Hyperacusis Central posted a video with closed captioning to cover this topic. Warning: check your sound level on your media device before watching.

Should the word hyperacusis be capitalized?

No. You only capitalize if a disease or illness is named after someone or a specific location.

What is Hyperacusis Central?

We raise awareness of hyperacusis and comorbid ear conditions through creative approaches on a variety of digital platforms, and also promote donations being channeled to entities that fund innovative medical research.

What is Hyperacusis Research?

Hyperacusis Research is a nonprofit organization whose mission is to fight pain hyperacusis and to also channel researchers to aid in that process. They educate patients and yearn to bring real treatments to the forefront as soon as possible.

What can I do to help? 

We encourage donations to go to Hyperacusis Research, and there’s a page on our website for that.

The money goes to the Hearing Health Foundation, which then grants it to a hyperacusis researcher through their emerging research grants. Through research, new knowledge can be obtained to show us how to treat it and cure it eventually. That’s the hope.

If you’re a hyperacusis sufferer, you can also contact us to share your story if you’re interested. The more awareness we have, the better, and the more recognition we’ll get.

References

Noreña, Arnaud J., Fournier, Philippe, Londero, Alain, Ponsot, Damien, & Charpentier, Nicolas. “An Integrative Model Accounting for the Symptom Cluster Triggered After an Acoustic Shock.” Sage Journals. 25 Sept 2018, https://journals.sagepub.com/doi/full/10.1177/2331216518801725.

“Meet the Researcher/Megan Beers Wood, Ph.D.” The Hearing Health Foundation, www.google.com/amp/s/hearinghealthfoundation.org/meet-the-researcher/beers-wood2022%3fformat=amp. 12 Dec 2019.

Tawk, Karen & Abouzari, Mehdi. “Cx26 heterozygous mutations: role in hyperacusis and vulnerability to noise.” Signal Transduction and Targeted Therapy. 10 July 2023, www.nature.com/articles/s41392-023-01525-1#:~:text=In%20a%20recent%20study%20published,to%20hyperacusis%2Dlike%20hearing%20oversensitivity.

Geng, Caitlin. “What to know about GERD and tinnitus.” Medical News Today. 29 July 2022, www.medicalnewstoday.com/articles/gerd-and-tinnitus.

Trejo-Gabriel-Galan, Jose Maria, Aicua-Rapún, Irene, Cubo-Delgado, Esther, & Velasco-Bernal, Carmen. “Suicide in primary headaches in 48 countries: A physician-survey based study.” Cephalalgia. Vol. 38. 2018, www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=https://journals.sagepub.com/doi/pdf/10.1177/0333102417714477%23:~:text%3DEven%2520if%2520trigeminal%2520neuralgia%2520is,to%252025%2525%2520of%2520suicide%2520attempts.&ved=2ahUKEwjP_oGr76yBAxVyIzQIHXp8BNcQFnoECA0QBQ&usg=AOvVaw2UVoXDWaj65ba_m7oL4Jwj.

“Trigeminal Neuralgia.” Yale Medicine, www.yalemedicine.org/conditions/trigeminal-neuralgia#:~:text=Trigeminal%20neuralgia%20is%20a%20rare,TN%20are%20diagnosed%20every%20year. 14 Sept 2023.

“Tinnitus.” The National Institute on Deafness and Other Communication Disorders, www.nidcd.nih.gov/health/tinnitus#:~:text=Tinnitus%20is%20common%2C%20with%20surveys,longer%2C%20it%20is%20considered%20chronic. Feb 2023.

Younkin, Lainey. “What Is a Low-Histamine Diet?” EatingWell. 23 June 2020, www.eatingwell.com/article/7826053/what-is-a-low-histamine-diet/#:~:text=%22Anyone%20working%20through%20a%20low,%2C%20grapes%20and%20cherries%2C%22%20Smith.

“Pawel J. Jastreboff.” Plural Publishing Inc., www.pluralpublishing.com/author/pawel-j-jastreboff. Accessed 14 Sept 2023.

Gold, Susan L. “Clinical Management of Tinnitus and Hyperacusis.” The ASHA Leader. 1 Nov 2003, https://leader.pubs.asha.org/doi/10.1044/leader.FTR1.08202003.4#:~:text=Category%204%20patients%20exhibit%20an,most%20difficult%20to%20treat%20successfully.

Williams, Zachary J., Suzman, Evan, Woynaroski, Tiffany G. “A Phenotypic Comparison of Loudness and Pain Hyperacusis: Symptoms, Comorbidity, and Associated Features in a Multinational Patient Registry.” American Journal of Audiology. Jan 2021, www.researchgate.net/publication/349107176_A_Phenotypic_Comparison_of_Loudness_and_Pain_Hyperacusis_Symptoms_Comorbidity_and_Associated_Features_in_a_Multinational_Patient_Registry.

“PTSD Guideline.” American Psychological Association, www.apa.org/ptsd-guideline/patients-and-families/cognitive-behavioral. 2017.

“How Dangerous is Lightning?” National Weather Service, www.weather.gov/safety/lightning-odds. Accessed 18 Sept 2023.

“Barriers to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-Year Survey.” NORD, www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=https://rarediseases.org/wp-content/uploads/2022/10/NRD-2088-Barriers-30-Yr-Survey-Report_FNL-2.pdf&ved=2ahUKEwiwm9zFuq2BAxX0l4kEHXHuBxUQFnoECA4QBg&usg=AOvVaw2Q3i6fL8OBYconPXHqDPOT. 19 Nov 2020.

“Request for Proposals.” NORD, https://rarediseases.org/advancing-research/request-for-proposals/. Accessed 14 Sept 2023.

Lee, Yishane. “In Memoriam: Bryan Pollard of Hyperacusis Research.” The Hearing Health Foundation. 16 Aug 2022, www.google.com/amp/s/hearinghealthfoundation.org/blogs/in-memoriam-bryan-pollard-of-hyperacusis-research%3fformat=amp.

3 Comments

  1. Tanya

    Thank you for the extensible article! I agree that overprotection is the best way so far. If I didn’t protect myself most of the time, I wouldn’t survive really. I’ve been thinking about inventing some kind of a specifically designed ‘hat’ for ears and face that would make it possible to go outside without a fear….. And I totally agree that hyperacusis make you survive and fight every day, and unfortunately it worsens. I wish everyone with loud and especially pain hyperacusis find strength to protect themselves and try to find a way to adapt and live their lives.

    Reply
    • J. D. Rider

      Thanks for reading this, Tanya! And thanks for the compliment! I like your idea for the invention. You should try it and see if it helps. 😀 Maybe it could help some people with hyperacusis. I wear heavy-duty earmuffs that block 30 dB and also earplugs, but still get instant pain from birds and nature when I go outside. So I just stay inside at all times.

      Reply
  2. Ana

    Hi J.D., you are an extraordinary writer and have a true gift when it comes to “a way with words,” as they say. Thank you for sharing your story so poignantly. Chronic, debilitating, invisible pain is so horrific- but somehow you’ve managed to turn it into poetry. Kudos and bravo. I’m curious if you’ve heard the anecdotal stories floating around Reddit and various hyperacusis forums (and Tinnitus Talk) about Clomipramine working for some people to drastically reduce- and even resolve- their hyperacusis? Not sure if the stories were from people with noxacusis or hyperacusis, but am wondering if you’d heard the same and/or tried it for yourself and/or have thoughts on the effects of tricylic pharmaceuticals on hyperacusis? I fully understand you are not a doctor, but you seem to know A LOT more about this awful condition than even most audiologists & ENTs so thought I’d ask. Thank you so much for continuing to spread awareness and share your wonderful way with words with the world! Also- I have to ask are you and Patricia still together? I read your blog post about how y’all met and fell in love and it was the sweetest story ever. I really hope you guys are!

    Reply

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