Doctors dismissed my debilitating exhaustion as ‘laziness’ and told me to drink coffee… then they discovered my little-known rare condition

A young North Carolina woman has spoken of the fear of being constantly dismissed as ‘lazy’ by doctors, when in reality she had suffered from a debilitating condition all her life.

Since her teenage years, 26-year-old Alyssa Davis has struggled to stay awake during the day, often falling over from exhaustion during her school years.

As she entered adulthood, the digital marketer saw no change in the problem, which she described as a “constant, bone-deep exhaustion that often clouded the edge of my vision.”

However, several visits to the doctor proved fruitless, with doctors simply advising her to ‘just drink coffee’ and accusing her of laziness.

It wasn’t until 2017 that Ms Davis was finally diagnosed with idiopathic hypersomnia, a narcolepsy-like condition that affects about 50 in a million people and causes excessive sleepiness for an unknown reason.

Ms. Davis searched for answers for years from doctors who called her “lazy” and advised her to drink coffee

Ms. Davis is now in the early stages of approval to take the first FDA-approved drug to treat the condition, which can be especially dangerous if someone drives a vehicle or operates heavy machinery.

Idiopathic hypersomnia is a little understood condition and is considered chronic.

Doctors typically choose medications to prevent daytime sleepiness because people with hypersomnia typically cannot fall into a deep, restful sleep at night.

She said: ‘It’s like I’m stuck on Groundhog Day – the exhaustion never leaves my body.’

Ms. Davis said she has battled extreme exhaustion for much of her life, falling asleep in class or even having to leave for a nap, and stumbling in the middle of dance class.

She said: ‘It wasn’t that I had the occasional late night, it was a constant, bone-deep exhaustion that often clouded the edge of my vision… The feeling of sudden exhaustion became a telltale sign that I was on was about to lose consciousness.’

She slept 10, 12, even 14 hours a night and “bathed in coffee,” but still couldn’t resist the lure of sleep.

She was eventually referred to a specialist in 2017, who advised her to participate in a sleep study. Moments later, her diagnosis was confirmed.

Ms Davis said learning her condition was diagnosable and getting much-needed answers was like ‘a series of flickering lights leading me through a dark tunnel’

A sleep study involves a full night’s sleep 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: ‘Discovering what was wrong wasn’t just a light bulb moment, it was more like a series of flickering lights leading me forward through a dark tunnel.

The cause of idiopathic hypersomnia is unknown.

The main symptom is daytime sleepiness, but can also manifest as difficulty waking up in the morning or after a nap, difficulty performing normal activities, headaches, brain fog, and sleep drunkenness.

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 prescribe the first FDA-approved IH drug, Xywav.

This drug 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 written off as unmotivated or inattentive when I don’t see myself that way…. It hasn’t been an easy journey and it still isn’t, but having a name for the battle I’ve been trying to grapple with for so long has been a lifeline.

‘It has given me the language to explain my experiences, it has given me the strength to stand up for myself and it has equipped me to fight for a better quality of life.’