Authors

Primary: Truli

Secondary: J. D. Rider

As a strong, courageous woman who has seen her share of suffering, I can easily say that hyperacusis has been the hardest struggle of them all—by far. My name is Truli, I’m in my mid 50s now, and I’ve had hyperacusis for what feels like my whole life. Yet it was only within the past year, upon receiving my audiology report, that I discovered this condition actually has a name, and that I’m certainly not alone with it.

I had made a private appointment with an audiologist, as I had never had any progress with a general practitioner before regarding my ear problems. I was nervous about the audiologist because 15 years prior a doc believed I had a fear of sound due to social phobia, and prescribed me beta blockers and antidepressants, which I never took as I was not depressed. I feared my condition might once again be shrugged off as something mental. I knew the doctor had received a copy of my report and I was nervous about discussing it with him. The report described my ear problems as “a history of bilateral pulsatile tinnitus accompanied by hyperacusis which is having a negative effect on life,” and stated “normal hearing level.”

At this new appointment I learned what was wrong with my ears all my life, thanks to the audiologist pointing out the term “hyperacusis” to me, and my personal research on the matter henceforth. Nevertheless, ensuing words offered no comfort—he had a biting tone, as he crushed my lofty attempts to capture validation, his lousy mood perfectly aligned with walls of boring white which occupied the office, remarking that, “An audiologist is not a doctor. And you are not likely to get anywhere with an ENT, either, as it is not an anatomical issue but a sensory one. And you will not qualify for disability benefits.” The nots were so discouraging. So my early impressions were shaken by his comments. They weren’t exactly jovial.

After I explained my history with hyperacusis—a quick attempt to cover my extensive ear experience, and how its pain disables me—he didn’t fail to continue with an attitude unneeded. (I had enough going on, and the last thing I needed was a smart-aleck doctor.) He ended the conversation with, “Is that your diagnosis?” There was a snide sense of disbelief, an arrogance unfiltered, a patient disrespected, his countenance the rigid look of questioning my sanity, and I was having none of it. I left on that note and didn’t want to go back. I felt belittled by the whole thing. These doctors never understand.

I disagree with any diagnosis that fancies my problems with sounds as being a mental illness, and this has played a large part in why I could never talk about my trauma and did not feel comfortable talking to doctors who I’ve met.

It is disheartening and intellectually disappointing that there is not enough medical support for people with this debilitating auditory condition. Disability precautions do not exist when working in environments that worsen hyperacusis, which could be eradicated if we only understood and recognised it legally, medically, and ethically.

Origins

I’m not sure if I was born with hyperacusis or if my inner ears became damaged very early in life, but I do know that the first 15 years of my life were likely influential. The house in which I lived was 50 feet away from a busy train track in London. On the other side of the track a factory existed with sirens that went off daily. We were also five miles from the airport where, at that time, Concorde planes flew low enough you would have to cover your ears because they were so loud. So it was a noisy start in life for me.

My mum said when I was a baby I used to “sob and cry” from the noise. She did not take me to a doctor, but my dad would drive me off in the car at night after work, far away from the thundering trains, cultivating sleep.

My earliest recollection of having a problem with sound was with dogs barking, loud machinery, and certain high-pitched frequencies, including people talking. My siblings and I were not allowed to make a lot of noise at home or outside; perhaps this was because our parents needed some peace from the noise that shook the windows, and possibly from us, too.

Later, when at school, I encountered dilemmas the very first day as my classmates threw a cacophony of noise around. It felt unusually loud and therefore caused me considerable distress, and I was told off sternly for crying and clinging on to my mum, and then was shoved into the school anyway. I hated all these new, increasingly loud sounds outside my already noisy home, as I was hoping school would be a quiet escape. Even today I still hate the sound of sharp screeching from playground kids. Churches, hymns, music, bells, painfully vibrating engine noise, and much more normal, everyday sounds, have always upset my inner harmony and natural need for peace and purpose. During most of my life I craved peaceful sound or pure silence.

When I was ten, I had an operation on my ears (of all things). It was a plastic surgery job to have them pinned back because my mother was fed up with the jokes that our family members were making. They teased about the size of my ears and picked me up by my head, holding my ears to make it look like I was being picked up by the ears. I do not recall it being fun for me at all, and I now believe it was a very dangerous thing. It ended up being pointless—the operation didn’t work; my ears still look the same.

That was all to do with my outer ears—merely cosmetic—and the only problem I have had from my outer ears since is the scars that still hurt from the 40-year-old operation. Typically, a burning/painful sensation of the back of the outer ears occur if I cover them, for example, with a soft hat, scarf, headset, or my more recent ear protection muffs, which I unfortunately can only wear for a few minutes at a time due to the scars.

Another significant exposure worth mentioning was back in the early ‘90s in my 20s, when my family and I moved from northern England to Scotland. While traveling, I had a relatively new gadget: the mobile phone. Unfortunately, using it started to burn my ears, especially with calls, as the artificial audio was very abrasive. Of course I continued to use mobile phones over the years, and they only recently stopped excruciatingly burning my ears and prolonging my pain, only because I don’t use them for calls anymore.

Around a year ago I had a 30-year-old mercury cavity filling fall out, which caused my jaw to start to click loudly while eating, yawning, smiling. As soon as this happened my pulsatile tinnitus began, too, which caused me to seek assistance from the previous audiologist (much to my dismay), only to be told it was “separate from tinnitus and due to grinding my teeth.” So I couldn’t resolve the matter. Still can’t.

When something negative happens and you have hyperacusis, it makes the coexisting with the hyperacusis so much harder to deal with, like with the aforementioned problem. And also, for example, in other instances, like traumatic noise events that happened in my life, piled on top of preexisting hyperacusis, affecting me very badly, and making my tolerance worse going forward.With these frightening symptoms that no one, including myself, could really understand—coupled with my fear of sounds because they hurt and worsened me—it was really hard to explain the horror of it all, especially when growing up, as hyperacusis was almost unheard of at the time, which sadly and inevitably made me withdraw from having a normal life, all due to the need to protect my ears and prevent pain and worsenings.

Finding a Place to Fit in

I’ve dealt with being a single parent with hyperacusis. I’ve fought to find a quiet place. When hyperacusis reaches levels that impact a person’s life significantly, trying to find a suitable spot is like trying to find a needle in a haystack the size of Earth! My two children and I have moved literally 30+ times within 14 years, including throughout England, Scotland, Wales, and now Ireland, where we’ve settled for almost 20 years, immersed into its plethora of greens and ocean marvels. But all the moving had to do with desperately trying to find a place with quietness. It was not easy but I had to try something for relief, and it felt like I was following survival instincts for many years to protect my life from unnecessary exposure to painful, disabling, and dangerous noise environments. We had lived and moved from areas like those on military flight paths with low-flying jets, or areas with gigantic sound system speakers and church bells.Getting away from the problem of the pain in my ears meant physically moving our home, which for me was a better solution than soundproofing windows, taking antidepressants, or putting up with noise-crazed environments. I believed a better, quieter environment held the solution. I was right.

We now live in a rural part of Ireland. I travel to town by boat once a week, as I have to get essential supplies. I have to survive, you know? I can’t stay at home protecting my ears from the further damages associated with painful sounds. I have to take some risks. Such is life with this condition. But I have no regrets about the way I got here, either. I do suffer more days than I don’t from hyperacusis.

My sensations have a bit of a pattern which occurs something like this: I feel a throbbing vibration in my ears when some kind of mechanical technology is close. For example, this happened to my ears yesterday. I found out that the Navy was docked nearby, and the humming/throbbing of their machines was likely causing the disturbance and pain with my hyperacusis, including the heavy sounds from their huge ships.

Other simple things are also threatening. Having coughs, colds, the flu, stress, make it flare up more. Music, TV, alarms, dogs, cars, laundry, washing dishes. Even the fridge and other sounds which seem so small and innocent—like distant waves from nature’s bliss that crash onto the shoreline—make my symptoms fire up, especially if I’m battling pain already.

As for tinnitus, I have a better grip on it than hyperacusis. As annoying and persistent as it is, I can often safely block the multiple tinnitus tones with an interesting lecture or ambient audio. But this does not allow me to enjoy silence, or natural peace and quietness, whilst I’m awake.

I have also experienced a broken speaker painful sensation in both ears. I physically duck when it happens, as if it were coming from an external source, like weaponry firing, because it sounds like it is, blasting all its frequencies in my ear and hurting for days after. It catches me off guard. Sometimes this condition is so weird. Well, oftentimes, really.

I’ve learned that moving away from unnatural, noisy, or dangerously unsafe environments, has helped reduce pervasive stress. Although it has not been a total solution for my hyperacusis, (Is there even such a thing?) it has helped to keep me a bit calmer. I am almost a recluse with no social life, religious gatherings or holidays, though I honestly believe the racket of loud and dangerous noise during these activities is utterly unnecessary. Nowadays I find comfort from my beautiful horses, and in all respects, likewise, I’m always aiming to invite the warmth of peace into my life.

My heart goes out to all who suffer from this rare and disabling condition. Thank you for reading just a little of my experience with lifelong hyperacusis. Also, thank you to Hyperacusis Central for allowing me to share this story of living with hyperacusis. I hope it can be of benefit to the community in some way. Finding more information and support from groups like Hyperacusis Central has helped me tremendously, even if that’s only just by knowing that I am not alone, and that this disabling condition is definitely not all in my head.