Alyssa Davis’s Battle with Idiopathic Hypersomnia: A Journey of Self-Discovery

A Life of Constant Exhaustion

Alyssa Davis often found herself dozing off at school and in dance classes growing up, which she chalked up to not getting enough sleep.

But the 26-year-old model and digital marketer knew something was amiss when she found it “impossible” to fight the urge to close her eyes out of pure exhaustion.

The North Carolina resident sought medical advice, claiming doctors dismissed her for years by telling her to “just drink coffee” — until she took part in a clinical sleep study and was diagnosed with idiopathic hypersomnia.

What is Idiopathic Hypersomnia?

Idiopathic hypersomnia is a rare chronic sleep disorder characterized by excessive sleepiness with no clear cause, affecting only up to 50 in every 1 million people, according to the Sleep Foundation news site.

Symptoms include dizziness or lightheadedness when standing, headaches, brief stints of sleep paralysis, and brain fog.

A Life of Constant Struggle

Davis says sometimes she has to plan for hours to complete simple tasks, adding that the condition clouds her thinking, making concentration a constant struggle.

“I have to prepare just to have a shower as the [exhaustion] never dissipates,” she explained. “I’ll sleep 10, 12, sometimes even 14 hours and still wake up feeling like I pulled an all-nighter.”

A Long and Frustrating Journey

After seeing countless doctors who allegedly called her “lazy” and “careless,” she became fed up and contacted a specialist.

Davis started showing symptoms as a child, noting 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 affected her daily life, and soon, her confidence.

Finally, a Diagnosis

The specialist suggested taking part in a sleep study, which required her to slumber for 14 consecutive hours.

The results showed her body never entered a deep state of sleep that’s needed for proper rest. In 2017, her condition was confirmed.

A New Hope

But then, in 2021, the first medication for idiopathic hypersomnia was approved by the Food and Drug Administration for adult use.

Davis is in the process of going through another sleep study so she can begin the Xywav treatment.

A Message of Hope and Awareness

“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,” Davis recounted.

“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,” she added.

Conclusion

Alyssa Davis’s story is a testament to the importance of seeking proper medical attention and the need for greater awareness about idiopathic hypersomnia.

By sharing her story, Davis hopes to encourage others who may be struggling with the condition to seek help and to raise awareness about the challenges faced by those living with idiopathic hypersomnia.

FAQs

What is idiopathic hypersomnia? Idiopathic hypersomnia is a rare chronic sleep disorder characterized by excessive sleepiness with no clear cause.

What are the symptoms of idiopathic hypersomnia? Symptoms include dizziness or lightheadedness when standing, headaches, brief stints of sleep paralysis, and brain fog.

How common is idiopathic hypersomnia? Idiopathic hypersomnia affects only up to 50 in every 1 million people.

What treatment options are available for idiopathic hypersomnia? The first medication for idiopathic hypersomnia, Xywav, was approved by the FDA in 2021 for adult use.