A young woman from North Carolina has told of the anguish of being constantly dismissed by doctors as “lazy” when in fact she suffered from a lifelong debilitating illness.
Since her teenage years, Alyssa Davis, 26, has struggled to stay awake during the day, often falling into exhaustion during her school days.
As she reached adulthood, the digital marketer saw no change in the problem, which she described as a “constant, profound exhaustion that often blurred the edge of my vision.”
However, several visits to the doctor proved fruitless, and the doctors simply advised her to “just drink coffee” and accused her of laziness.
It wasn’t until 2017 that Ms Davis was finally diagnosed with idiopathic hypersomnia, a narcolepsy-like condition that affects approximately 50 in every million people and causes excessive sleepiness for an unknown reason.
Twenty-six-year-old Alyssa Davis was diagnosed with idiopathic hypersomnia, a condition similar to narcolepsy that causes excessive daytime sleepiness.
Ms. Davis spent years seeking answers from doctors who called her “lazy” and recommended she drink coffee.
Ms. Davis is now in the early stages of approval to take the first FDA-approved medication to treat this condition, which can be especially dangerous if a person drives or operates heavy machinery.
Idiopathic hypersomnia is a poorly understood disorder and is considered chronic.
Doctors often opt for medications to prevent daytime sleepiness, since people with hypersomnia typically cannot get deep, restful sleep at night.
She said: “It’s like I’m stuck in Groundhog Day – the tiredness never leaves my body.”
Ms. Davis said she has struggled with extreme exhaustion for much of her life, falling asleep in class or even having to go outside to take a nap, and tripping in the middle of dance class.
She said: “It wasn’t just like having an occasional all-nighter, it was a constant, bone-deep exhaustion that often blurred the edge of my vision… The feeling of sudden exhaustion became a telltale sign that I was about about to lose consciousness.
He slept 10, 12, even 14 hours a night and “bathed in coffee,” but he still couldn’t fight sleep.
Finally, in 2017, she was referred to a specialist, who recommended that she participate in a sleep study. A little later her diagnosis was confirmed.
Ms Davis said learning her condition was diagnosable and getting much-needed answers was like “a series of blinking lights that led me forward through a dark tunnel”.
A sleep study involves sleeping overnight in a sleep study center, during which time the patient is connected to a series of sensors so experts can analyze their sleep patterns throughout the night.
She said: “Finding out what was wrong wasn’t just a lightbulb moment, it was more like a series of blinking lights that led me forward through a dark tunnel.
The cause of idiopathic hypersomnia is unknown.
The main symptom is daytime sleepiness, but it can also manifest as difficulty waking up in the morning or after a nap, difficulty performing normal activities, headaches, mental confusion, and drunkenness during sleep.
Doctors often prescribe stimulants such as Ritalin and modafinil to keep people awake during the day.
Ms. Davis is now undergoing another sleep study to be prescribed the first FDA-approved HI medication, Xywav.
This medication is taken at night and is believed to work by affecting the neurotransmitter GABA.
GABA binds to certain receptors in the brain that modulate brain activity related to sleep patterns.
Specifically, it increases the amount of a type of brain wave called delta waves, which are typically associated with slow-wave sleep, the most restorative type.
Ms. Davis said: “It’s no fun being labeled as unmotivated or inattentive when that’s not how I see myself… It wasn’t an easy journey and it still isn’t, but having a name for the struggle I’ve been dealing with coping with for so long has been a lifesaver.
“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.”