This Rare Sleep Disorder Has Life-Altering Consequences

Idiopathic hypersomnia impacts less than 200,000 people in the U.S. That makes it even more difficult to live with.

By Anissa Durham

How do you feel when you wake up in the morning? Refreshed or rested?

People with idiopathic hypersomnia, rarely experience waking up without an overwhelming sense of tiredness. You probably haven’t heard of IH because it’s a rare sleep disorder that makes people feel sleepy during the day.

Less than 200,000 people in the U.S. have this disorder, compared to the nearly 70 million Americans who have the most common sleep disorder, insomnia. Due to the rarity of IH, it’s easier for people to get misdiagnosed with other disorders.

Common symptoms of IH are severe sleep inertia — when you feel confused in the morning — difficulty waking up, brain fog, and daytime sleepiness. Victoria Kirby York knows these symptoms all too well.

In her freshman year at Howard University, she started falling asleep in class.

“I had always been an overachiever,” Kirby York says, but things changed when she couldn’t stay awake. “I felt hopeless, but I also felt embarrassed.”

Her professor recommended she get a sleep test.

After multiple misdiagnoses of depression and petite seizures, six months passed when she was diagnosed with IH. As a Black woman, she says it was harder for her to get an accurate diagnosis.

“We don’t talk about these kinds of disorders. We don’t know they exist,” Kirby York says. “When I talked to my classmates about it, people didn’t know what I was talking about.”

A Sleep Expert Weighs In

“It’s a challenging diagnosis to make,” says Dr. June Seliber-Klein, a 20+ year sleep board-certified MD in Monterrey, CA. “IH is a bit more of a diagnosis of exclusion.”

When Seliber-Klein is evaluating patients, there are specific identifying symptoms doctors look for with sleep apnea or narcolepsy. But, due to the rarity of IH, she has to rule everything else out before making a diagnosis of IH.

One of the main symptoms of IH is excessive sleepiness, but that’s also a symptom of many other sleep disorders. Depression and hypothyroidism can cause sleepiness, she says — additional factors doctors have to keep in mind.

Some patients may undergo bloodwork, overnight sleep studies, a neurology evaluation, genetic testing, or an MRI scan — Seliber-Klein says, which contributes to the challenge of getting a diagnosis.

Accessibility is another red flag. For folks who may not have insurance, accessing quality health care is difficult. But, even if you have health insurance, booking an appointment at a sleep center isn’t as easy as it used to be.

“Sleep centers are so busy now,” Seliber-Klein says. “When I first started, we could get patients into sleep centers much more quickly. Now it’s hard to get an appointment.”

Sleeping While Black

Falling asleep shouldn’t be dangerous.

But for people with sleep disorders like Kirby York, falling asleep at the wrong place and at the wrong time can be deadly. In 2020, Atlanta police officers killed Rayshard Brooks after he fell asleep in his car outside of a Wendy’s drive-through.

“It’s a fear that I live with when driving,” she says.

Now, Kirby York advocates for Black and LGBTQ communities through her work at the Hypersomnia Foundation Diversity, Equity, and Inclusion Task Force. One thing she is focusing on is helping folks like her to sleep safely in their car.

Photo courtesy of Victoria Kirby York.

More than a decade has passed since her diagnosis. Kirby York has been on different medications and treatments.

Many people living with IH don’t experience REM sleep, the phase of sleep where dreams occur. During REM sleep, our brains develop, process emotions, consolidate memories, and help to activate our nervous system. On top of that, deep sleep is a challenge for Kirby York.

And these days, the hardest part is waking up.

“It doesn’t matter if I sleep 15 hours or five hours,” she says. “I don’t ever wake up feeling refreshed.”

As a result, she struggles with brain fog and forgetfulness. When folks like Kirby York are unable to get enough restorative sleep, it can contribute to conditions like hypoxia, hypertension, and diabetes.

In a survey of 75 participants with IH, people who slept for more than 11 hours in a 24-hour period experienced more severe symptoms, like brain fog, excessive daytime sleepiness, and sleep inertia.

Due to the rarity of the IH sleep disorder, people who are undiagnosed are often seen as lazy, or not trying hard enough. Despite her diagnosis, Kirby York says as a mother, parent, leader, and wife, she still deals with the stigma associated with experiencing tiredness.

“When people look at me, they assume that my brain is working the same as anyone else,” she says.

To manage her symptoms, Kirby York does a few things every day. She takes a 5000 IU dose of vitamin D a day and looks on social media for a boost of adrenaline. “I also drink a Monster juice blend or tea blend a day.” All in the hopes of staying awake.

Using caffeine to manage IH is common. Researchers found the three most common ways people living with IH manage their symptoms is through caffeine, planned naps, and accommodations like more time on tests or delayed morning routine.

There is a certain level of fear some folks may have about seeking treatment, Kirby York says. In part, people are afraid, that they may lose their job if an employer found out about a sleep disorder.

The lack of knowledge about the disorder feeds into the stigma that Black people are lazy. And the systemic barriers around access to health care in the Black community make it increasingly difficult to get treatment.

Kirby York says there was a time when she thought she was just doing too much.

“Specifically for Black people, sometimes our intuition will tell us something’s wrong, but we rationalize it away. Too often, we miss the windows to get the kind of support and help that we need,” she says. “It’s really important to talk to your doctor … and to follow through.”

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