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

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Written By Rivera Claudia

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  • Rare sleep disorder affects 50 in 1 million, causing excessive daytime sleepiness
  • Young woman was repeatedly told by doctors to drink coffee to fight exhaustion
  • READ MORE: Silent sleep disorder ‘hypersomnia’ affects one in 70 people

A young woman from North Carolina has told of the anguish of being consistently dismissed by doctors as ‘lazy’ – when in fact she was suffering a debilitating life-long condition.

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

As she reached adulthood, the digital marketer saw no change in the problem, which she described as a ‘constant, bone-deep exhaustion that often blurred the edge of my vision’.

However, multiple trips to the doctor proved unfruitful, with physicians 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 roughly 50 in a million people, and causes excessive sleepiness for an unknown reason.

Twenty-six-year-old Alyssa Davis was diagnosed with idiopathic hypersomnia, a narcolepsy-like illness that causes excessive sleepiness during the day

Ms Davis spent years looking for answers from doctors who called her 'lazy' and recommended drinking coffee

Ms Davis spent years looking for answers from doctors who called her ‘lazy’ and recommended drinking coffee

Ms Davis is now in the beginning stages of approval to take the first FDA-approved medication to treatthe condition, which can be especially dangerous if a person is driving or operating heavy machinery.

Idiopathic hypersomnia is a little-understood disorder and is considered chronic.

Doctors typically opt for medication to prevent daytime sleepiness, as people with hypersomnia typically cannot fall into a deep, restful sleep during the night.

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

Ms Davis said that she has fought extreme exhaustion for much of her life, dozing off in class or even having to leave to take a nap, and stumbling over in the middle of dance class.

She said: ‘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… The feeling of sudden exhaustion became a tell-tale sign that I was about to lose consciousness.’

She would sleep 10, 12, even 14 hours a night and ‘bathe in coffee’, but still couldn’t fight off the pull of sleep. 

Eventually, in 2017, she was referred to a specialist, who recommended she take part in a sleep study. A little later, her diagnosis was confirmed.

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

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

A sleep study involves a full night’s sleep in a sleep study center, during which time the patient is hooked up to a series of sensors so that experts can analyze their sleep patterns throughout the night.

She said: ‘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.

The cause of idiopathic hypersomnia is unknown.

The main symptom is daytime sleepiness, but can also manifest as having a hard time waking up in the morning or from naps, struggling to do 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 be prescribed 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.

Specifially, 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 to be written off 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 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.’

FDANorth Carolina

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