Woman with rare ear disorder hears eyeballs move: 'Sounds will make me dizzy'
MAPLE GROVE, Minn. (FOX 9) - A woman from Maple Grove closes cabinet doors quietly, doesn't run the dishwasher until bedtime and makes her family live their lives in hushed tones. She has changed her entire lifestyle to keep her extreme symptoms at bay.
Stephanie Schmitz has an ear disorder so rare that most doctors have never heard of it.
"Sounds will make me dizzy. Sometimes it's people's voices. Sometimes it's a fire truck driving by. It can be the simplest thing. I can't barely stand to hear my son laugh, and I think that's what's really hard for me because that's what my life is --taking care of him," Schmitz told FOX 9.
She said her son, 9-year-old Jaxon, knows not to ask to go places because she can’t handle the noise.
"I compete in skateboard contests and usually she doesn't go to them. Like she wants to go, but she can't because it's so loud for her," said her son, Jaxon Severson.
It all started 7 years ago. Schmitz would randomly get dizzy, and her symptoms progressed slowly from there, eventually leading to sound-induced dizziness that can be so severe it leaves her bedridden. She can even hear internal sounds coming from inside her body.
"You're not used to hearing people that hear their eyeballs move and hear their eyes blink and hear their neck creak … or they can hear their footsteps in their ear, they hear their heartbeat," she said.
She stumped doctors for six years, as they suggested she was a hypochondriac, depressed or anxious. In the meantime, she switched jobs and learned to rely on earplugs.
"I truly remember being on my knees and praying like, ‘please help me figure out an answer. I can't live like this forever,’" she said.
"It breaks my heart," said her boyfriend, Lee Anderson. "Any kind of gatherings – holidays, Christmas any kind of things with families -- we obviously limit our exposure to all the noise," Anderson said.
Finally, a friend of a friend referred Schmitz to a doctor who specialized in dizziness. Last year, he diagnosed her with a form of superior canal dehiscence syndrome, a rare ear disorder that means she has a hole in one of her ear canals. Her condition is even more complicated than most because the hole is in an uncommon location, her posterior canal.
"It feels like every sound goes through your entire body," Schmitz said. "The sound doesn't go through your ear, it goes through that hole, and so then that creates the sound issues and that's why you hear all those internal sounds and why you get dizzy by sound is your ear isn't functioning properly."
And if that isn't enough, she battled and defeated thyroid cancer last year.
"What I often tell people is I would absolutely do that 10 times over again before I would want to live another day with this, hands down," Schmitz said.
Schmitz said her only option is surgery out of state, but she'd have to pay tens of thousands out of pocket and there's no guarantee it would work. She even could go deaf.
So as she continues to search for answers, her family has learned to accommodate.
"My mom just got so many fun things taken away from her," Jaxon said. "(But) I would rather not do something fun and just make her sit home and rest cause I know how hard it is."
So she celebrates the days when she's feeling well enough to spend time with the people she loves, hoping one day she'll find relief.
"It's hard when people can't see from the outside how difficult my day-to-day life is," Schmitz said. "You can't tell that someone is really suffering on the inside from something like this."
Anderson is trying to raise awareness and get financial help for Schmitz’s condition. To read more about her struggle with this disorder or to donate, visit their GoFundMe page.