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Julie Bloch Johnson, 32, spent years thinking her daytime sleepiness was normal. Sure, sometimes she needed to pinch herself to stay awake, and she could take a nap anytime she closed her eyes. But she figured that kind of daily overwhelming drowsiness affects everyone at some point.
That changed when she found out she had idiopathic hypersomnia (IH).
"I actually cried," Johnson says. "Because it's a situation where you really do think it's kind of your own failing. And when you get the diagnosis, at least for me, it was a bit of a weight lifted off that it wasn't just something everybody else is able to deal with and I'm not."
In the decade since her diagnosis, Johnson has learned to manage life with a sleep disorder. She's found a job that offers her the freedom to work from home and a medication that helps her stay awake. And she leans on her husband and family for support.
"Remember, there are people who love you," she says. "You might not always feel that way, but they are there, and they want to help."
"People who are really fighting to stay awake during the day -- finding themselves falling asleep intentionally or unintentionally -- should certainly think about a sleep evaluation."
- Lynn Marie Trotti, MD
Beginning the Journey
Johnson's sleepiness started to creep in her senior year of high school. She'd fall asleep during friends' house parties and snooze after school until dinnertime. But she "chalked it up to seasonal affective disorder."
In college, she'd doze off during lectures and nap before study sessions. She slept in a lot. But she says it was easy to blame her sleepiness on something else: a lack of rest, too much stress, not enough coffee, allergies.
But she couldn't ignore her symptoms forever. After she graduated college, she took a job with Teach for America as a first-grade teacher. "At one point, while waiting for one of my kids to read a letter sound, I was about to nod off," she says.
That's when Johnson decided to get professional help for her sleep problems.
"At one point, while waiting for one of my kids to read a letter sound, I was about to nod off."
- Julie Bloch Johnson
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Identifying Symptoms
Lynn Marie Trotti, MD, associate professor of neurology at Emory University School of Medicine, says excessive daytime sleepiness (EDS) is the core feature of idiopathic hypersomnia.
"People who are really fighting to stay awake during the day -- finding themselves falling asleep intentionally or unintentionally -- should certainly think about a sleep evaluation."
Another telling sign is strong sleep inertia, or sleep "drunkenness." It's normal for everyone to wake up and briefly go back to sleep, Trotti says. "That's why alarm clocks have snooze buttons." But for some people with IH, waking up can be a battle.
"People with idiopathic hypersomnia sometimes need to set four different alarm clocks with three different snoozes and one of them has to be down the hall," Trotti says. Or "they have alarm clocks that shake the bed."
"People with idiopathic hypersomnia sometimes need to set four different alarm clocks with three different snoozes and one of them has to be down the hall."
- Lynn Marie Trotti, MD
You may also have symptoms that affect how you think and feel, including:
The Diagnosis
Johnson says it was pretty easy for her to find answers once she decided to ask for them. She turned to her father, a family medicine doctor, who pointed her in the right direction.
"I'm very lucky that he knew enough about sleep disorders to not immediately dismiss it."
In 2011, while home for Christmas, Johnson got her first overnight sleep study. Lab technicians attached sensors to her head and body. All those sticky devices recorded her brainwaves, body movements, and heart rate while she slept in a dark room for 8 hours. "That was to make sure I didn't have sleep apnea or anything else to explain that daytime sleepiness," Johnson says.
The next step was a multiple sleep latency test (MSLT), or daytime nap study. While in a quiet place, Johnson got the chance to take five naps throughout the day.
The MSLT can diagnose narcolepsy and IH. Sleep specialists look to see how many of the five naps have REM sleep in them. To get a diagnosis of IH, Trotti says, it has to be zero or one.
"That one feature of the sleep study is the only thing that lets you distinguish idiopathic hypersomnia from narcolepsy type 2," Trotti says.
People with IH also need to fall asleep, on average, within 8 minutes or less. Johnson guessed her sleep latency would be about 5 minutes. Instead, she learned she could conk out in 30 seconds or less. That's when she realized that her sleep was "legitimately different than other people," she says.
"I actually cried. Because it's a situation where you really do think it's kind of your own failing. And when you get the diagnosis, at least for me, it was a bit of a weight lifted off that it wasn't just something everybody else is able to deal with and I'm not."
- Julie Bloch Johnson
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Next Steps
Johnson met with a sleep doctor who started her on a "nonstimulant, wake-promoting" drug. It boosts levels of dopamine, a brain chemical linked to alertness.
This class of drugs is a common first-choice treatment for IH. But it wasn't a good fit for Johnson.
"I don't remember if it worked, but I remember thinking there's no way, financially, I could stay on it," she says. "And there's no way with those headaches that I could stay on it."
Johnson's doctor then switched her to a stimulant. But it made her heart race and wasn't a "very comfortable drug to be on," so she took it only as needed.
"If I was taking a road trip or there was something that I needed to be up for, I would definitely take my medication," she says. "And that's kind of how I used it for 8 or 9 years."
Although she settled on a medication plan with her first doctor, Johnson's treatment journey wasn't smooth sailing. Lots of doctors weren't familiar with IH, she says, or were uncomfortable prescribing a stimulant for her condition.
"Every time I moved somewhere and formed a new relationship with a doctor, or if I needed a new prescription, I had to go through the same song and dance again," she says.
"A lot of people are like maybe you sleep too much, and that's why you're always tired. Or did you have coffee? What about exercise? People always suggest what works for them and don't fully understand."
- Julie Bloch Johnson
In 2020, Johnson decided she wanted to move away from stimulants, but she needed to repeat her sleep study first. This time, the doctor wanted to wean her off her antidepressant for a short time. They wanted to make sure the medication wasn't suppressing REM sleep.
But the IH diagnosis remained, even though Johnson had kind of hoped it might change.
"It doesn't matter treatment-wise, but if I'm diagnosed with narcolepsy, I might be able to have better reimbursement from health insurance," she says, "because it doesn't have the word 'idiopathic' in it." Idiopathic means there's no known cause.
"Every time I moved somewhere and formed a new relationship with a doctor, or if I needed a new prescription, I had to go through the same song and dance again."
- Julie Bloch Johnson
In July 2020, the FDA approved Xywav as a treatment for cataplexy or excessive daytime sleepiness in people 7 years old and older with narcolepsy. In August 2021, the FDA approved Xywav to treat idiopathic hypersomnia in adults.
"That's a medication that people take at bedtime and potentially again in the middle of the night," Trotti says. "And it improves wakefulness the next day."
Living With Idiopathic Hypersomnia
Exercise never boosted Johnson's alertness. Neither did naps. But before the diagnosis, she used certain techniques to stay awake. Johnson would stand up if she got tired, eat while studying, or drink lots of coffee. Sometimes she'd even make herself uncomfortable. For example, if she was on a long drive, "not peeing so you have that feeling of having to go to the bathroom to keep you awake."
These days, Johnson takes a nonstimulant wakefulness-promoting drug approved to treat narcolepsy. But doctors can use it "off-label" to treat other sleep disorders. Along with daily caffeine, her medication helps her feel more awake for about 6 to 8 hours.
"Depending on what I need to do, it's either going to be coffee in the morning and (the new medication) in the afternoon, or vice versa," Johnson says. "That ensures that I won't have to take a nap at lunchtime and/or after work. And I won't feel the unbearable need to go to sleep by 8 or 9 (p.m.)."
Johnson says the new medication is easier to tolerate than a stimulant. But she admits she doesn't like to take it every day. The new medication comes with some side effects -- it raises her heart rate a little and triggers stomach troubles. But she's glad she's found a medication that'll help her stay alert when she really needs to be.
"Obviously, I won't be able to take the medication when I'm pregnant or breastfeeding," Johnson says. "But I will be able to when we have 7 a.m. swim practice, 9 a.m. soccer practice, 10 a.m. dance, and on through the day."
"Before my antidepressant, I was crying every day. Sometimes multiple times a day."
- Julie Bloch Johnson
Mood disorders are common in people with IH. And when unmanaged, they can make it harder to live with IH.
Johnson says it's "always been a bit of a puzzle" for her to untangle the two conditions. But her antidepressant has been "life-changing." It's boosted her nighttime sleep quality and helped regulate her emotions.
Getting Support
Johnson says she gets a lot of well-meaning tips and sympathy about her symptoms. But advice from those without hypersomnia often "underestimates the gravity" of her condition.
"A lot of people are like maybe you sleep too much, and that's why you're always tired," she says. "Or did you have coffee? What about exercise? People always suggest what works for them and don't fully understand."
In 2020, after her second sleep study, Johnson shared her IH journey on Facebook. She posted under a hashtag linked to the Hypersomnia Foundation -- #beyondsleepy -- and connected with others who have hypersomnia. She also has a friend with narcolepsy who she can open up to.
Johnson gets support outside of the hypersomnia community, too. If you have IH, she encourages you to reach out to your friends and family when needed.
"Ask them to hold you accountable, to pull back the shades on the days you don't want to get out of bed, to pick you up for your therapy appointments, to keep you going. They will."
- Julie Bloch Johnson
The Mystery Behind Idiopathic Hypersomnia
Tips for Adjusting to Life With Idiopathic Hypersomnia
How Is It Diagnosed?