A woman has shared her harrowing ordeal after fighting the urge to stay awake due to extreme exhaustion because of a rare condition – and claims doctors told her to “just drink coffee” as a solution.
When Alyssa Davis often found herself drifting off while at school or during dance classes, she put it down to not getting enough sleep.
But when the 26-year-old found it “impossible” to fight the urge out of pure exhaustion, she knew something wrong.
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She sought out medical advice but claims she was told to “just drink coffee” for years until she took part in a clinical sleep study and was diagnosed with idiopathic hypersomnia.
Now, while there are various treatments available, little is known about the condition and it’s still affecting her daily life – with her having to plan for hours to do simple tasks.
“It’s like being trapped in the Groundhog Day movie – except instead of reliving the same day, I just relive the same exhaustion,” Alyssa, a model and digital marketer, told Need To Know.
“I have to prepare just to have a shower as the exhausted never dissipates.
“I’ll sleep 10, 12, sometimes even 14 hours and still wake up feeling like I pulled an all-nighter.
“The exhaustion isn’t just physical.“It clouds my thinking, making concentration a constant struggle.”
Alyssa, from North Carolina, US, started showing symptoms as a child and says that her mum recalls having to put her down for a nap more often than not.
She was always more tired than her friends and family, which often affected her daily life, and soon, her confidence.
The 26-year-old said: “Ever since I was a little kid, sleep and I haven’t got along.
“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 theatre class, excited to do my favourite lesson and suddenly my memory would blur.
“The feeling of sudden exhaustion became a tell-tale sign that I was about to lose consciousness.
“My fatigue increased in high school and I’d fall asleep in class – even having to sometimes leave for naps.
“I routinely stumbled to the side in tap dance, slump to the floor, unable to remain upright and there were countless times when I felt unsafe.
“I was embarrassing and I didn’t know what the problem was.”
After seeing countless doctors and allegedly being labelled as “lazy” and “careless” as well as drinking as much coffee as possible to try and stay awake, she became fed up and contacted a specialist.
While there, the specialist suggested taking part in the aforementioned sleep study, and in 2017, her condition was confirmed.
Idiopathic hypersomnia is a rare chronic sleep disorder that causes excessive sleepiness with no clear cause, affecting only up to 50 in every one million people, according to Sleep Foundation, a website led by experts on sleep.
Alyssa said: “I was practically bathing in coffee before I got an answer and I felt like my struggles were seen as personal failings.
“But the specialist saw me for not just my fatigue, but the reason behind it.
“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.”
As part of the study, she had to sleep for 14 hours straight, which showed her body never entering a deep state of sleep that’s needed for proper rest.
While she finally had an answer, there was no treatment available at the time.
But then, in 2021, the first medication specifically for this condition was FDA-approved, which aims to treat the multiple symptoms through the night and to take effect during the day.
Now, she’s currently in the process of getting an updated sleep study done so she can begin treatment and hopes to share her story to raise awareness.
Alyssa added: “You’re your own best advocate and often, we have to chase down the care we deserve.
“It’s no fun to be written off as unmotivated or inattentive when that’s not how I see myself.
“I have big dreams and big goals, and I want to make a difference in the world.
“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.
“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.”
