Idiopathic hypersomnia patient says doctors dismissed her as lazy

health

by tracy swartz

She was tired of being tired all the time.

As a child, Alyssa Davis would often fall asleep at school or dance class, and she thought it was because she wasn’t getting enough sleep.

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

The North Carolina woman claims her doctors ignored her for years and told her to “just drink coffee” until she participated in a clinical sleep study and was diagnosed with idiopathic hypersomnia. Seeked medical advice.

“It’s like being stuck in the movie ‘Groundhog Day,’ only instead of reliving the same day, you’re reliving the same feeling of exhaustion,” Davis said. What is jam?.

Idiopathic hypersomnia is a rare chronic sleep disorder characterized by excessive sleepiness with no apparent cause, affecting only up to 50 people per million. According to the Sleep Foundation news site. Symptoms include lightheadedness or lightheadedness, headaches, short-term sleep paralysis, and brain fog.

Ms Davis said she sometimes had to plan for hours to complete simple tasks, adding that the condition clouded her thinking and she struggled to stay focused. .

“I have to get ready just to take a shower. [exhaustion] It never goes away,” she explained. “You can sleep for 10, 12, even 14 hours and still feel like you’ve been up all night in the morning.”

Davis said her symptoms started appearing as a child and she remembers her mother frequently having to put her down for naps.

She was always more tired than her friends and family, which affected her daily life and eventually caused her to lose confidence.

“Ever since I was little, sleeping and I didn’t get along,” she said. “It wasn’t something that kept me up late at night. The constant, bone-deep fatigue often blurred the edges of my vision.”

“I was sitting in drama class, excited to be teaching my favorite lesson, and all of a sudden my memory went fuzzy,” Davis continued. “Sudden fatigue became a tell-tale sign that I was about to pass out.”

Davis said that during her high school years, she became increasingly fatigued and would fall asleep in class, sometimes having to leave school for naps.

“There were countless times when I was constantly tripping sideways, falling to the floor, unable to stay upright and fearing for my safety while tap dancing,” Davis recalled. “I was embarrassed and didn’t know what the problem was.”

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

Experts suggested she participate in a sleep study that would require 14 hours of continuous sleep.

They found that her body never entered the deep sleep state necessary for proper rest. Her condition was confirmed in 2017.

“I almost felt like I was being doused in coffee before I got an answer. I felt like my struggles were seen as a personal failure,” Davis said with a sigh. “Knowing what was wrong wasn’t just a lightbulb moment, it was a series of flickering lights guiding me forward through a dark tunnel.”

She eventually found an answer, but struggled to manage her condition.

However, in 2021, the first treatment for idiopathic hypersomnia was born. Approved by the Food and Drug Administration For adults.

Davis is undergoing another sleep study in hopes of starting Zywab treatment. Now she is sharing her own experience to raise her awareness about her sleep disorder and encourage others to seek proper medical care for her.

“It wasn’t an easy journey, and it still isn’t, but it was a lifeline that allowed me to put a name to a fight I’ve been trying to tackle for a long time,” Davis said.

“It gave me the words to describe my experiences, gave me the strength to advocate for myself, and prepared me to fight for a better quality of life,” she added.