Idiopathic hypersomnia patient says doctors dismissed her as lazy

Health

By Tracy Swartz

She was tired of being tired all the time.

Alyssa Davis often found herself dozing off at school and in dance classes growing up, which she chalked up to not getting enough sleep.

But the 26-year-old model and digital marketer knew something was amiss when she found it “impossible” to fight the urge to close her eyes out of pure exhaustion.

The North Carolina resident sought medical advice, claiming doctors dismissed her for years by telling her to “just drink coffee” — until she took part in a clinical sleep study and was diagnosed with idiopathic hypersomnia.

“It’s like being trapped in the ‘Groundhog Day’ movie — except instead of reliving the same day, I just relive the same exhaustion,” Davis told What’s The Jam.

Idiopathic hypersomnia is a rare chronic sleep disorder characterized by excessive sleepiness with no clear cause, affecting only up to 50 in every 1 million people, according to the Sleep Foundation news site. Symptoms include dizziness or lightheadedness when standing, headaches, brief stints of sleep paralysis, and brain fog.

Davis says sometimes she has to plan for hours to complete simple tasks, adding that the condition clouds her thinking, making concentration a constant struggle.

“I have to prepare just to have a shower as the [exhaustion] never dissipates,” she explained. “I’ll sleep 10, 12, sometimes even 14 hours and still wake up feeling like I pulled an all-nighter.”

Davis started showing symptoms as a child, noting that her mom recalls having to put her down for a nap more often than not.

She was always more tired than her friends and family, which affected her daily life, and soon, her confidence.

“Ever since I was a little kid, sleep and I haven’t got along,” she shared. “It wasn’t just like having the occasional late night. It was a constant, bone-deep exhaustion that often blurred the edge of my vision.”

“I’d sit down in theater class, excited to do my favorite lesson and suddenly my memory would blur,” Davis continued. “The feeling of sudden exhaustion became a tell-tale sign that I was about to lose consciousness.”

Davis said her fatigue increased in high school and she’d fall asleep in class, sometimes even having to leave to take a nap.

“I routinely stumbled to the side in tap dance, slumped to the floor, unable to remain upright, and there were countless times when I felt unsafe,” Davis remembered. “It was embarrassing, and I didn’t know what the problem was.”

After seeing countless doctors who allegedly called her “lazy” and “careless,” she became fed up and contacted a specialist.

The specialist suggested taking part in a sleep study, which required her to slumber for 14 consecutive hours.

The results showed her body never entered a deep state of sleep that’s needed for proper rest. In 2017, her condition was confirmed.

“I was practically bathing in coffee before I got an answer, and I felt like my struggles were seen as personal failings,” Davis sighed. “Learning what was wrong wasn’t just a lightbulb moment, it was more like a series of flickering lights leading me forward through a dark tunnel.”

While she finally had an answer, she struggled to manage the condition.

But then, in 2021, the first medication for idiopathic hypersomnia was approved by the Food and Drug Administration for adult use.

Davis is in the process of going through another sleep study so she can begin the Xywav treatment. Now, she’s sharing her story to raise awareness about the sleep disorder and encourage others to seek proper medical attention.

“It wasn’t an easy journey and it still isn’t, but having a name for the struggle I’ve been trying to grapple with for so long has been a lifeline,” Davis recounted.

“It’s given me the language to explain my experiences, empowered me to advocate for myself, and equipped me to fight for a better quality of life,” she added.