Authored by J. D. Rider

“C’est un cauchemar”—French for “It’s a nightmare”—is an endless thought in Sonia Lombardini’s mind while hiding from sounds in Nouvelle-Aquitaine, France. “Not everyone who gets hyperacusis comes from a history of sound abuse,” Sonia wrote decidedly, tracing the steps which led to her condition, where after a brush with COVID-19 which climaxed with a burst right eardrum, accompanied by hearing loss and obstinate infections, and then a simple surgery (a tympanostomy to treat Eustachian tubes which were not breathing right), she got this aural nightmare—this pain hyperacusis—where the faintest of sounds trigger burning sensations in her right ear.

“Was it COVID or the surgeries?” Sonia wrote to speculate. “The surgeries weren’t noisy, though they did give me an anesthetic, which could have been ototoxic. And I took some antibiotics. Maybe those did me in. Or maybe the hyperacusis came from the hole in the eardrum. I underwent a tympanoplasty to try to fix it. The procedure didn’t work, though, so there’s still a hole there. Perhaps the infections led to hyperacusis. My ENT tells me that my gastric reflux has been causing those. I just don’t know.”

But she wishes she did. At this moment almost nothing is proven for hyperacusis, and probing it in any way is really speculation. Sonia’s hope is that research will crack the anatomical origins hyperacusis has, leading to treatments and a cure. In vain she tries to answer this: Why was I unlucky? And Why’d I get this stupid thing? But here’s the real question: Why does hyperacusis ever happen to anyone? That’s the basis for why extensive research is paramount, exploring all avenues, as theories that it’s solely caused by sound abuse and medicines are murky in their logic, as X person and Y person both exposed to sounds or took those ototoxic pills (the same repetition of abuse), but X got hyperacusis, and Y never did. The irony, too, is that oftentimes Y did way more abuse than X ever did (in both areas). It doesn’t add up, and common sense would tell you X must have had a predisposition to get this condition due to another factor, whether it’s genes, muscle imbalances, a brain injury, et cetera. Under this point-of-view then, it’s not the sounds which did them in or even medications—the root and the thing to blame is THAT WHICH MADE THEM VULNERABLE to sounds or medications. With hyperacusis being rare, most folks are invulnerable. The key is finding out why.

Until then, people like Sonia will suffer at the hands of a condition alien and damning. Even being young is no exception for hyperacusis. She thought she had her whole life ahead of her, where all her family’s milestones would grant participation, but now she’s stuck inside a house. She’s a 41-year-old and married with four kids who range from 18 to six in age, but forget the birthday parties, forget the graduations, the weddings and the little ones to crown her as a grandmother, as the entrance of hyperacusis quickly made her find that normal sounds her kids would make and life’s affairs in general were kryptonite to be around. What’s tragic is exposing to these sounds will permanently worsen her, even with earplugs and earmuffs on, pain setting in hours afterward instead of instantly, plummeting her tolerance. So life is desolation, and the list of sounds which bother her is so gigantic it would likely span one hundred feet with small handwriting.

“I can’t leave my house, riding in the car is torture, hearing traffic, going to stores. I don’t go out at all. Except when I have a doctor appointment, and it usually sets me back, even with protection. I miss the precious routine of taking my son to school each morning. Now I have a hired hand to do it. I no longer participate in the sporting events and homework/training sessions with my kids. I used to enjoy going to my 18-year-old son’s apartment, doing the things that most families do, like traveling, restaurants, and just each other’s company. And that’s what matters most—just being in their company, but this doesn’t let you.

“Even at home I don’t get peace. The stove and the central heat and air conditioning are hard to deal with. I can’t cook, watch TV with audio, or make phone calls. I haven’t seen most of my other family members since August 2024.

“Every day I wear earplugs for protection though I wrestle with my tinnitus; I got it in 2023 due to serous otitis media, but the ringing became reactive once hyperacusis came. Exposing to noise makes it louder. And wearing the plugs amplifies the ringing, which is torture. I don’t have a choice, though; without them the hyperacusis pain is unbelievable. There are days when I can’t stand it anymore. It’s hell with the two combined.”

Sonia explained how the combined effects of these conditions have been devastating, causing her to have to quit her job. She misses it because it was her long-held passion. She’d been working at a center for the visually impaired and blind, doing dining room service, giving lunch to children, and cleaning everything. No longer can she mingle and she loathes the sacrifice.

“I’m a social butterfly, a person who’s very smiley and loves to talk and laugh . . . very dynamic in nature with a zest for life because I want to move forward . . . not stall, not hide, not suffer daily. But it’s not easy. At all. This condition closes you off from everything.

“People often say, ‘What treatments can you try?’ ‘None!’ I hate to answer. I can’t take medications, my ears get worse with all of them, and sound therapy hasn’t worked; it worsens me, but hiding from sounds hasn’t let me get better, either. So I’m trapped.

“People in my position are neglected by doctors who do not know what to do. I hope my testimony will raise awareness, things will change, and research will discover hyperacusis’s origins; that science will advance and we will get some help with treatments or a cure. This isn’t psychological—it’s physical and torturous. And proper developments will let these ear conditions get the recognition needed by organizations like MDPH (Maisons Départementales des Personnes Handicapées; France’s outfit which helps the disabled with many services) and CPAM (Caisse Primaire d’Assurance Maladie; France’s health insurance fund). So this is a call to action: to move toward these important goals. I want my life back.”