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 drink coffee as a solution.
When Alyssa Davis often found herself drifting off at school or during dance classes, she blamed not getting enough sleep.
Jam PressAlyssa Davis suffers from a rare condition that causes her to have extreme exhaustion[/caption]
Jam PressDavis underwent numerous studies to try and uncover the cause behind her sleepy condition[/caption]
Jam PressIn 2017, Alyssa Davis was diagnosed with Idiopathic hypersomnia – a rare chronic sleep disorder[/caption]
But she knew something was wrong when the 26-year-old found it impossible to fight the urge out of pure exhaustion.
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,” Davis said.
“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.”
Davis, a North Carolina native, started showing symptoms as a child and says 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 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 favorite 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 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.”
I was practically bathing in coffee before I got an answer,”
After seeing countless doctors, being labeled as lazy and careless by her peers, and drinking as much coffee as possible to try and stay awake, she became fed up and contacted a specialist.
While there, the specialist suggested she take 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 apparent cause, affecting only up to 50 in every one million people, according to Sleep Foundation, a website led by experts on sleep.
Davis 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, Davis had to sleep for 14 hours straight, which showed her body never entered a deep state of sleep that’s needed for proper rest.
While she finally had an answer, no treatment was available at the time.
However, in 2021, the first medication specifically for this condition was approved by the US Food and Drug Administration.
The medication aims to treat multiple symptoms through the night and take effect during the day.
What is Idiopathic hypersomnia
Idiopathic hypersomnia is a rare sleep disorder that causes people to be very sleepy during the day despite a good night’s rest, according to the Mayo Clinic.
A person with the disorder may feel tired during the day, sleep longer than usual at night, or take long naps but still wake up feeling exhausted.
People with the disorder may struggle to meet specific work, academic, or social obligations.
Experts estimate that between 20 to 50 out of every million people may be diagnosed with the disorder.
One-third to two-thirds of people with idiopathic hypersomnia also experience symptoms of severe sleep inertia – described as waking up feeling groggy and disoriented.
People with idiopathic hypersomnia may also experience:
Dizziness or lightheadedness when standing up
Headaches
Moments of feeling too hot or too cold
Brief episodes of sleep paralysis
Hallucinations when falling asleep or waking up
Brain fog
Davis is 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.
“You’re your own best advocate, and often, we have to chase down the care we deserve,” Davis said.
“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.”
Jam PressDavis said she was often labeled as ‘lazy and careless’ by her peers[/caption]
Jam PressAlyssa Davis claims that before her diagnosis, doctors recommended she ‘just drink coffee’ to fight off her exhaustion[/caption]“}]]