Patient with idiopathic hypersomnia says doctors called her lazy

She was tired of being tired all the time.

Alyssa Davis often found herself dozing off in school and dance classes growing up, which caused her to not get enough sleep.

But the 26-year-old model and digital marketer knew something was wrong when she found herself “unable” to fight the urge to close her eyes from sheer exhaustion.

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

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

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

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

“I just need to get ready to take a shower [exhaustion] it’s never distributed,” she explained. “I’ll sleep 10, 12, sometimes 14 hours and still wake up feeling like I’ve pulled an all-nighter.”

Davis began showing symptoms as a child, noting that her mother remembers 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 faith.

“Since I was little, I sleep and I’m not well,” she said. “It wasn’t just like having a late night. It was a constant, bone-chilling exhaustion that often blurred the edge of my vision.”

“I’d be sitting in theater class, excited to do my favorite class, and all of a sudden my memory would blur,” Davis continued. “The feeling of sudden exhaustion became a telltale sign that I was about to pass out.”

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

“I routinely tripped sideways in tap dancing, fell to the floor, unable to stand, and there were countless times when I felt unsafe,” Davis recalled. “It was embarrassing and I didn’t know what the problem was.”

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

The specialist suggested she participate in a sleep study, which required her to sleep for 14 hours straight.

The results showed that her body never entered a deep sleep state that is necessary 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 viewed as personal failures,” Davis sighed. “Learning what was wrong wasn’t just a lightbulb moment, it was more like a series of flashing 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 another sleep study so she can start treatment with Xywav. Now, she is sharing her story to raise awareness of 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 face for so long has been a lifeline,” Davis confesses.

“It has 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.