Adjusting to Life With It

Idiopathic hypersomnia (IH) is a sleep disorder without a cure. It’s not well-understood. Even experts don’t know what causes it.

Your sleepiness might get in the way of your daily life. When that happens, you might find that people around you don’t get how hard your symptoms are to manage.

But remember that IH is a medical condition. It’s not your fault.

“It’s really important that people realize they are not their illness,” says Lynn Marie Trotti, MD, associate professor of neurology at Emory University School of Medicine in Atlanta. “Their illness is a thing that has happened to them.”

Your doctor can help you come up with a treatment plan. You might need medication, talk therapy, or lifestyle changes. It can be a challenge to adjust to life with IH. But there are strategies that can help.

Make Sleep a Priority

Most adults need about 7 to 9 hours of sleep every day.  But people with IH are different.

“They can sleep more than 11 hours every single night,” says Sabra Abbott, MD, assistant professor of neurology and sleep medicine at Northwestern Feinberg School of Medicine in Chicago.

You may not feel very awake even if you sleep a lot. But you still need to get a good night’s rest. The effects of not getting enough sleep will likely hit you harder than someone who doesn’t have IH.

“Sleep is less of an optional thing,” Abbott says. “Not that sleep is optional for anybody, but [people with IH] are going to be much less likely to be able to function well if they [stay up late] and only get 5 to 6 hours of sleep.”

Get Help at Work and School

Abbott says she knows some people with IH who’ve tried all kinds of alarm clocks, yet they still oversleep.

“We’ve gone through all the technology that’s out there: the alarm clock that jumps off the table and rolls across the room, the alarm clock that requires you to do math equations to turn it off.”

If you have trouble waking up in the morning, Abbott says you should put some workplace accommodations in place. That could be a flexible or later start time or a conversation with your boss to raise awareness about IH. It’s important for your employer to know your tardiness is due to a medical condition, she says, not “laziness or irresponsibility.” 

The same goes for school. If your child has IH, their teacher or an administrator should be aware of their condition. They might be late sometimes because they “literally couldn’t wake up,” Trotti says.

IH can affect learning in other ways. Trotti says it can cause symptoms such as brain fog, poor memory, or trouble concentrating. So when it comes to longer classwork, she says it can be really helpful for people with IH to get extra time or breaks.

“I have [people] who need to stand up during prolonged classes or tests to help them stay awake,” she says. “Sometimes people will have a small snack. Anything to try to maintain alertness.”

Try Behavioral Therapy

Cognitive behavior therapy (CBT) is a type of talk therapy. The goal is to change unhelpful thoughts and behaviors to boost your quality of life. These techniques should fit alongside other kinds of medical treatment for IH.

CBT might work for you in a few different ways. It might:

Help reframe your thoughts. Abbott says many people with IH “spend their whole lives being told, ‘Oh, you’re lazy; you don’t try hard enough; you’re not doing the right things.’” She says it can be helpful to think about IH as a biological disorder. That’s something a counselor can help you do.

Ease anxiety and depression. There’s plenty of evidence that CBT can ease mental health symptoms for all kinds of ongoing illnesses. That’s good news because “there’s a lot of overlap between almost all sleep disorders and anxiety and depression,” Abbott says. “As you probably know, if you don’t sleep well, you don’t feel very well. And if you don’t target one, then the other one is going to get worse.”

Manage your time. Psychologist Jason C. Ong, behavior sleep medicine director for Nox Health and adjunct associate professor of neurology and sleep medicine at Northwestern Feinberg School of Medicine in Chicago, created a pilot program called CBT for hypersomnia (CBT-H). His early research shows that people with IH can get more done while sleepy when they break up their day.

“People with hypersomnia might not be able to approach the day like others do — in one big chunk — because they get sleepy much faster,” Ong says. “By splitting up the day into smaller chunks of time, it becomes more manageable and easier to take corrective action.”

Ong’s CBT-H program isn’t widely available just yet, though he says some therapists are using it. But based on his research, you should: 

• Keep a diary of how you spend your day.
• Rate how sleepy you are throughout the day.
• Divide your day into blocks: morning, afternoon, and evening.
• Find ways to manage your energy during those smaller chunks.

Ask your counselor about ways to recharge and stay alert. That might include:

• Medication
• Exercise
• Light exposure during the day
• Relaxation techniques, such as mindfulness

Unlike people with narcolepsy, experts don’t suggest daytime naps for people with IH. In fact, if you do take a nap, you may get “sleep drunkenness” afterward. That means it’ll be really hard to wake up or you may get a strong urge to go back to sleep.

Educate Those Around You

IH can feel like you’ve taken a sleeping pill that never wears off. But people without a sleep disorder may not grasp what that really feels like for you. That’s because “sleepiness is the sort of thing that every human being has experienced at one time or another,” Trotti says.

“It’s easy for people without hypersomnia to say, ‘We all get sleepy. Just suck it up. Have some coffee and take a nap.’”

You might be able to shed some light on your symptoms if you bring your loved ones to your appointments. Your doctor can go over why everyday strategies don’t work for you, and they can explain how your sleepiness isn’t something under your control.

“When I have the opportunity in that setting, I try very hard to make it clear that this is a disease that has happened to someone,” Trotti says. “This is not something that someone is doing to themselves.”

Find Support

You might feel less alone if you connect with others who know what you’re going through. “Especially since people who are diagnosed with idiopathic hypersomnia — it’s something they’ve never heard of before,” Trotti says.

Search for support through national organizations such as the Hypersomnia Foundation or online through social media. Ask your health care provider or social worker if there are groups in your area that can help.