Idiopathic Hypersomnia [or IH] is an extremely rare of sleep disorder that almost nobody has heard of. People who deal with this particular condition face many challenges, not only trying to sleep but performing regular functions throughout the day. In some cases, they’re even looked down upon.
Breaking Down IH
Idiopathic Hypersomnia is classified as a rare central sleep disorder. Here’s what that means:
- Idiopathic
- Hypersomnia
- Central
- Sleep Disorder
Idiopathic means that there is no known cause. Hypersomnia is when you are excessively tired throughout the day, or you need massive amounts of sleep. Central means it’s neurologic [or related to the brain]. A sleep disorder is defined as having an issue with the quality, timing, and or amount of sleep you get.
Key Symptoms
Key symptoms of IH are:
- Never Feeling Rested
- Daytime Sleepiness
- Sleep Inertia
- Unrefreshing Naps
- Brain Fog
- Sleeping Long Hours
People with IH wake up and never feel like they got any rest. They also fall asleep throughout the day and experience “sleep inertia,” or what’s referred to as “sleep drunkenness.” Also, they take naps and never feel refreshed, and they tend to have the ability to sleep extra-long hours.
However, sleeping long hours or taking naps all of the time can sometimes make people with IH feel even worse. According to ARISE, people who slept more than 11 hours in a 24-hour period experienced more severe symptoms, like brain fog, excessive daytime sleepiness, and sleep inertia.
Seventy million Americans have some form of a sleep disorder, and Victoria Kirby York is one of only 200,000 diagnosed with IH. Kirby York started experiencing symptoms of IH during her freshman year of college when she continually fell asleep during class. It got so bad that one of her professors recommended she have a sleep test done.
“I felt hopeless, but I also felt embarrassed.”
Victoria Kirby York
After several tests, she was misdiagnosed with depression and petite seizures. Finally, after six months, she was diagnosed correctly with IH. Kirby York says, as a black woman, she wasn’t informed about conditions like IH.
“We don’t talk about these kinds of disorders. We don’t know they exist. When I talked to my classmates about it, people didn’t know what I was talking about.”
Dr. June Seliber-Klein, a 20+ year sleep board-certified MD in Monterrey, CA, says, “It’s a challenging diagnosis to make. IH is a bit more of a diagnosis of exclusion.”
Symptoms of IH can mimic symptoms of other sleep disorders, exacerbating the issue of getting or not getting a correct diagnosis and, in turn, not getting proper treatment.
How to Combat IH
For York, dealing with IH hasn’t been easy. She often worries about falling asleep when driving, among other issues.
She’s been on several treatments and medications for more than 10 years since she was diagnosed, and she currently advocates for Black and LGBTQ communities through her work at the Hypersomnia Foundation Diversity, Equity, and Inclusion Task Force.
Kirby York says, “It doesn’t matter if I sleep 15 hours or five hours. I don’t ever wake up feeling refreshed.”
On top of brain fog and forgetfulness, a lack of restorative sleep can also lead to hypoxia, hypertension, and diabetes. Caffeine, planned naps, and certain accommodations have proven the best ways to combat IH. Planned naps and accommodations typically need to be worked out with your employer.
IH in Texas
Dr. Eric Griggs told KBTX that medications, drugs, and other conditions can cause IH. He also said 39% of people with IH have a “familial link” (hereditary), and it’s more common in women than in men. Here are some places in Texas you can research if you need help with IH:
Sleep Clinic – Texas Institute for Neurological Disorders
Texas Sleep Clinic | Sleep Studies, Sleep Medicine and CPAP Machines and Supplies