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"I'm tired all the time, 24/7, with waves of insufferable sleepiness," Wall says. "I'm using every ounce of my body to stay awake, but my eyes will close. I have no choice."
For Wall, the urge to nod off isn't a fleeting feeling that gets better with rest. It's a constant companion that reshapes her life, a reality shared by others living with idiopathic hypersomnia (IH).
Her struggles started early. Diagnosed with type 1 diabetes at age 8, Wall remembers being more tired than is typical for other kids. When she brought it up to her pediatrician, he tied it to anxiety, depression, and diabetes. Therapy followed, but the sleepiness stuck around.
By the time high school rolled around, Wall's need for naps grew stronger. It wasn't until her freshman year of college that she realized the excessive sleepiness might be something more than what her doctors thought.
Homework took her twice as long as it did her peers. Studying for exams? That took five times as long, and sometimes she'd doze off in the middle of a session.
"I remember falling asleep with open binders around me before I could even start," Wall says. "I was so incredibly sleepy."
Socializing was also harder. She often stayed in or slept ahead of time just to function instead of hanging with friends in the dining hall or heading out for a fun night like the average college student.
"I found myself prioritizing all my free time as napping opportunities," Wall says. "And I saw all my peers wake up 20 minutes before class, roll out of bed, and just go. I was like, 'Geez, I wish I could do that.'"
Encouraged by her roommate, Wall talked to her doctor again. This time, he referred her for a sleep study. When the diagnosis came back as IH, she was confused but also relieved.
"I felt this wave of, 'Wow, I'm not crazy. I wasn't exaggerating my symptoms,'" Wall says.
Since then, she's worked closely with a neurologist and sleep medicine doctor. While sleepiness continues to shape her daily routine, she has found ways to manage symptoms and take back control.
"I'm tired all the time, 24/7, with waves of insufferable sleepiness, I'm using every ounce of my body to stay awake, but my eyes will close. I have no choice."
- Haley Wall
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What Experts Want You to Know:
Key Facts About Idiopathic Hypersomnia
Excessive daytime sleepiness is the hallmark - or main - symptom of IH. Other facts to note:
- Sleep inertia, also called "sleep drunkenness," can make mornings especially challenging.
- Misdiagnoses, such as insomnia and depression, often delay proper treatment.
- Sleep studies with overnight and daytime nap tests are key to diagnosing IH.
- People with IH often need 9 hours or more of sleep a night even on treatment.
"We all know people who can sleep for six hours and grind all day. But if you have a sleep disorder, you can't do that," says Lynn Marie Trotti, MD, a sleep medicine specialist and professor of neurology at Emory University School of Medicine. "If you try to push the limits and stay up late or pull an all-nighter, you're going to be much more impacted than the average person."
Managing Symptoms
Wall's journey to feeling awake wasn't quick or simple. Six years passed between her first mention of tiredness (what she now knows was excessive daytime sleepiness) and her referral to a sleep specialist.
Seven years after her diagnosis, she relies mainly on stimulants: an extended-release form once daily and an instant-release stimulant three times a day. But finding the right treatment took time and patience.
Her first medication triggered an allergic reaction. Others didn't help at all or stopped working over time. Eventually, she found a plan that helped her stay awake.
"I was lucky to have such a great doctor right off the bat after my diagnosis who listened when I said, 'This isn't working. Is there something else we can add? Can the dosage be tweaked? What's the next step?'" Wall says.
Wall has learned to recognize when her symptoms worsen and when it's time to make a change. The most obvious sign is falling asleep accidentally more often, but she also gets a full-body mental exhaustion that lasts all day. "When basic activities like taking a shower, getting out of bed, and being able to wake up from the 10 alarms I have blaring in my face become incredibly hard, I know it's likely time to try something else," Wall says.
"When basic activities like taking a shower, getting out of bed, and being able to wake up from the 10 alarms I have blaring in my face become incredibly hard, I know it's likely time to try something else."
- Haley Wall
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Treatment Options for Idiopathic Hypersomnia
The Right Treatment and Team
You may not figure out what works for you right away.
"There's no sugar-coating it: It's a trial-and-error path for most people." Trotti says. Don't hesitate to speak up if your current treatment isn't helping enough. Some people with IH stick with a medication that isn't working well because it's better than nothing, Trotti says, but there may be other options to explore.
It's also important to work with a board-certified sleep specialist. These experts have the knowledge and tools to treat rare sleep disorders like IH. And if you're already working with one but don't feel heard, it's OK to seek a second or even third opinion.
"If your doctor makes you feel bad about the medications you're taking or doesn't listen, that's a red flag," Trotti says. "And if it's somebody you feel you can't be honest with, it's not a good fit." Beyond a sleep specialist, Trotti suggests adding a mental health professional to your care team. Specific therapies, like cognitive behavioral therapy for hypersomnia (CBT-H), can teach skills to better navigate life with IH.
Talk therapy can also help you manage anxiety, depression, or other tough feelings.
"It's really hard to live with a chronic disease," Trotti says. "Therapy can be really helpful in working through some of those emotions. Trying to reconcile who you were before the disease with who you are now."
Optimizing Your Lifestyle
Wall still needs a full eight to nine hours of sleep every night, something that hasn't changed with treatment. And while stimulants help her stay physically awake, they don't do much for her sleep inertia or brain fog. "I've heard the term 'fake awake,' and I completely agree," Wall says.
Wall uses strategies she learned through occupational therapy training to fill the gaps where her current treatment falls short.
She swaps her chair for a yoga ball, works at a standing desk, and takes walks often. "Sitting
for too long makes everyone feel drained and tired, but that happens much faster for me," Wall
says. "So if I can move my body a little bit more- more than other people- I'm going to."
Wall gives herself at least two hours to feel fully awake and functional. For example, if she
has a 10 a.m. start, she sets her morning alarm for 6:30. "By the time I leave for work, I've
already taken two doses of my medication."
Wall doesn't power through her to-do list. She breaks tasks down, especially ones that require a
lot of energy. "If I can't do a full task in one sitting, I do one step, allow my brain to turn
off for a little bit, and come back to it."
Wall goes to bed and wakes up at the same time every day, even on weekends. "My sleep habits
don't necessarily make it easy to wake up. But consistency helps just enough to make it not
impossible to wake up."
Crunchy snacks, fizzy drinks, and sour candies help keep her alert. Spritzing sour candy spray
on her tongue provides a quick jolt. A cool environment also helps. "If I start getting warm,
there's a 99.9% chance I'm going to fall asleep," Wall says.
Wall is open about her needs and turns to her husband and close family for support. "I'm not
supposed to hold all these responsibilities on my own shoulders. They can be shared."
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Building Community and Support
Many people have never heard of IH, let alone met someone who has it. But being part of the sleep disorder community helps Wall feel less lonely and isolated. "It's something I didn't realize I needed until I was in it talking to people," Wall says.
Wall moved out of her comfort zone and turned to social media to share her story. She uses platforms like Instagram and TikTok to raise awareness and offer practical advice.
"A lot of people have reached out to me saying it's so great to see IH being represented by somebody living with it," Wall says.
Her advocacy didn't stop there. Wall also connected with the Hypersomnia Foundation, which helped her find her voice in the IH community.
"I ended up reaching out to them and just saying, 'Hi, I'm Haley. I'm a newly graduated occupational therapist, and I have IH. I'd love to see how I can get involved.'"
For Wall, attending the Hypersomnia Foundation's #BeyondSleepy conference was a pivotal moment. The event brought together individuals, families, and experts to share stories and find support. It was also the first time Wall met others with hypersomnia face-to-face.
"It was just such a beautiful experience, to walk into a community of people who truly understood me," Wall says. "I felt like I'd known them for my whole life."
Cultivating Resilience and Moving Forward
If you don't, you're lazy and unmotivated, right? That's the "incredibly toxic" message people with IH hear over and over again, one Trotti pushes back on.
She emphasizes the importance of separating yourself from your illness.
"No one chooses to have IH, and the symptoms are bad enough on their own," Trotti says. "To feel like it's your fault in some way for not rising above them just compounds the burden."
Wall knows that weight all too well. After finishing grad school, getting married, and moving to a new state, she hit a breaking point. The changes were exciting, but the stress took a toll, leaving her exhausted and frustrated with her body's inability to keep up. She remembers thinking: "I knew what I'd just done, so why am I not able to get up and take a shower right now? Why does everything feel like it's sucking every piece of energy out of me?"
Like Wall, you may face setbacks. But that doesn't erase your progress or mean the condition is worsening. Symptoms change for many reasons, and just as bad periods come, they can also get better, Trotti says.
Your waking hours are limited when you live with IH, so don't let your job take them all. Think big picture.
"Don't forget that it's important to prioritize family, friends, and other things that make you a whole person."
"Don't forget that it's important to prioritize family, friends, and other things that make you a whole person," Trotti says. Wall's experience echoes Trotti's advice. She's learning to accept her limits and not be so hard on herself when she needs to rest and recharge. And she chooses to make space for things that matter most, even if they leave her running on empty afterward.
"Are there things I'm willing to go into a flare for? Absolutely," Trotti says. "I'm trying to live a life with joy and fulfillment and happiness. If I said no to everything, I wouldn't be where I am today."
Learn More About Idiopathic Hypersomnia
Is It Idiopathic Hypersomnia or Narcolepsy?
Tips for Adjusting to Life With Idiopathic Hypersomnia
Managing Your Relationships With Idiopathic Hypersomnia