For those afflicted with pain hyperacusis, the challenge of conveying to others how easily their pain is triggered and how severely it affects them, can seem insuperable. In many cases where we’ve discussed it with other sufferers, they describe how they have repeatedly been dismissed, gaslit, or even outright verbally attacked for expressing their need for accommodation.
The goal of this article is to share a diverse array of descriptive pain experiences, that can be presented to non-sufferers in order to help them grasp the enormity of the situation, and hopefully facilitate assent to sufferers’ health-related requests. Below are four sufferers’ accounts of their pain experiences presented in various formats.
Scott’s First Person Narrative Experience:
Waking a little before 6 a.m. to a quiet house, I lay in bed with 29 NRR 3M 1100 foam earplugs deeply inserted. Unceremoniously, my ears are greeted by the sound of someone upstairs rising for the day — a solitary creak followed by a few pops as their feet touch the floor.
Straightaway a shooting pain travels through my left ear canal, leaving in its wake a dull ache. Within a few minutes the ache branches out across the whole left side of my face and intensifies. I decide to put on double protection, grabbing my Peltor X5A earmuffs — always kept within arm’s reach — to lessen the likelihood of exacerbating things with another noise insult.
Ten minutes pass; the ache spreads to the left occipital area of my head. The intensity of the now-far-reaching-ache starts to regularly fluctuate between moderate and mild. This pattern continues for the next few hours.
Finally, the episode starts to die down: the ache recedes in my ear, forehead and occipital area, while being overtaken by tingling and throbbing sensations in my cheek and jaw. Thankfully, those too abate over the next hour.
J.J. Rider’s Detailed Overall Experience:
My pain hyperacusis is very severe. I feel instant discomfort or pain to almost every noise. It doesn’t linger, though. I’ll feel the pain when the sound itself is happening, but then it goes away. For example, a person’s voice — at normal speaking volume — will cause stab-like feelings in my ears; sharp, ice-pick sensations where my eardrums feel like they’re going to implode on themselves.
Shifts in dynamic range are also a catalyst. So when a sound goes from low to high, changing in an instant, my ears can’t handle it; that change triggers pain. When people talk quieter or whisper, the level of impact is lower. I’d describe it as discomfort more than pain, except certain letters in the spoken voice are harder to tolerate no matter what, even with whispering. The letter S, for example, carries a frequency and tone that’s hard to endure, and hurts even at low volumes, so I’ll feel a wind-like sensation running through my ears, which also is painful.
When I hear a train passing in the distance or a police siren, those cause pain at varying levels. As the sound waves wax and wane, the pain does, too. So when the noises peak at their loudest point, the pain is worse. When neighbors mow their lawns or use landscaping equipment, I’ll feel pain or discomfort likewise.
I’m forced to wear protection in all of the above scenarios, but oftentimes, especially with voices, it’s not good enough — I’ll still feel pain. So the limits imposed on me are beyond severe. To say they’re limiting is actually an understatement. I isolate myself — staying homebound — and try to keep my environment as quiet as possible, but sound is everywhere, so it’s a constant struggle. Even showering with both ear plugs inserted and earmuffs on is difficult, and will worsen my symptoms, at least temporarily. I’ll become more sensitive.
Brian’s Summary Experience:
I have a catastrophic case of pain hyperacusis. My overall sound tolerance is extremely low, and certain trigger noises can cause excruciating pain that at times leads me to vomit. In particular, high pitched squeaks from things like doors, beds, and faucet handles can lead to extended pain episodes that leave me bedbound and debilitated.
I am forced to wear double hearing protection the majority of the time. Unfortunately, sound can still lead to pain and is virtually unavoidable. Some of the sensations I experience are as follows: deep and sharp stabbing pain in my ear canal, burning pain that feels like my ear has been set ablaze inside, a sensation like razor wire being pulled through my ears ripping into my flesh, an aching that feels like my ears are brittle and going to implode, electric shock-like shooting pains that travel from my ears to my face, teeth and behind my eyes. All of these sensations can last from hours to days.
Jonas’ First Person Narrative Experience:
About a week after experiencing my latest setback, I lie in bed unable to sleep. I decide to watch some Netflix, which I have installed on my PS4. The volume on my TV is set to minimum; I am being careful not to hurt my ears.
After some time, I do get sleepy and turn off my TV and PS4. For some reason the PS4 has issues shutting down and resets itself. Unexpectedly, Three beeps follow each other in quick succession. The same sound did not hurt my ears when I turned the PS4 on, yet now I immediately feel something is off in my bad ear.
A few minutes later, an intense burning comes on in that ear. My eardrum feels inflamed and there is a sensation like something is pulling on it. I feel defeated. In my head, I deliberate if this pulling is the harbinger of stabbing pain some of my fellow sufferers describe. How can three trivial beeps cause this much pain?
Slowly but surely, the pain starts to alleviate. After sleeping the pain is gone, but my low tolerance to sound remains.
As you can tell from the above experiences, pain hyperacusis has a wide spectrum of manifestations. Seemingly, no two cases are exactly alike. Sufferers’ level of sound intolerance and severity of pain can vary greatly.
While the above experiences fall on the more severe end of the spectrum, even a mild case can effectuate major limitations on a person’s day-to-day activities and need for accommodation. Family, friends, and coworkers: we ask that you keep in mind how difficult it is for a sufferer to protect themselves from noise insults, and realize that in asking for accommodation we are not looking to stifle your lives, but merely to lessen our own suffering.