Idiopathic hypersomnia (IH) is a sleep disorder with no cure. It's not easy to understand. Not even experts know what causes it.

Your drowsiness could interfere with your daily life. When that happens, people around you may not understand how difficult it is to manage your symptoms.

But remember that HI is a medical condition. It's not your fault.

“It's really important for people to realize that it's not their illness,” says Dr. Lynn Marie Trotti, associate professor of neurology at Emory University School of Medicine in Atlanta. “Their illness is something that has happened to them.”

Your doctor can help you make a treatment plan. You may need medication, psychotherapy, or lifestyle changes. It can be challenging to adjust to life with HI. But there are strategies that can help.

Make sleep a priority

Most adults need to sleep between 7 and 9 hours a day. But people with HI are different.

“They can sleep more than 11 hours each night,” says Dr. Sabra Abbott, 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 probably affect you more than someone who doesn't have HI.

“Sleep is one less optional thing,” Abbott says. “It's not that sleep is optional for anyone, but [people with IH] will be much less likely to perform well if [stay up late] and only sleep 5 to 6 hours.”

Get help at work and school

Abbott says he knows some people with HI who have tried all kinds of alarm clocks, but they still fall asleep.

“We've looked at all the technology out there: the alarm clock that jumps off the table and rolls across the room, the alarm clock that requires you to do math to turn it off.”

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

The same goes for school. If your child has HI, her teacher or administrator should be aware of her condition. Sometimes they can be late because “they literally couldn't wake up,” Trotti says.

HI can affect learning in other ways. Trotti says it can cause symptoms like brain fog, poor memory, or trouble concentrating. So when it comes to longer coursework, she says it can be very helpful for people with HI to have extra time or breaks.

“Have [people] who need to stand up during long classes or exams to help them stay awake,” he says. “Sometimes people have a small snack. Anything to try to stay alert.”

Try behavioral therapy

Cognitive behavioral therapy (CBT) is a type of psychotherapy. The goal is to change unhelpful thoughts and behaviors to improve your quality of life. These techniques should be combined with other types of medical treatment for IH.

CBT could work for you in different ways. What could:

Help reframe your thoughts. Abbott says that many people with HI “spend their entire lives being told, 'Oh, you're lazy; you don't try hard enough; You're not doing the right thing.'” She says it can be helpful to think of HI as a biological disorder. That's something a counselor can help you do.

Relieves anxiety and depression. There is plenty of evidence that CBT can alleviate mental health symptoms of all types of chronic 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 one is not attacked, the other will get worse.”

Manage your time. Psychologist Jason C. Ong, director of behavioral sleep medicine at 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 HI can get more done when sleepy interrupts their day.

“People with hypersomnia may not be able to cope with the day like others do, in large part because they get sleepy much more quickly,” Ong says. “By dividing the day into smaller periods of time, it becomes more manageable and easier to take corrective action.”

Ong's CBT-H program is not yet widely available, although he says some therapists are using it. But according to his research, you should:

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

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

• Medicine
• Exercise
• Exposure to light during the day.
• Relaxation techniques, such as mindfulness.

Unlike people with narcolepsy, experts do not recommend daytime naps for people with HI. In fact, if you take a nap, you may feel “sleep drunk” afterward. That means it will be very difficult to wake up or you will feel a strong need to go back to sleep.

Educate those around you

HI can feel like you've taken a sleeping pill that never goes away. But people without a sleep disorder may not understand what you're really feeling. That's because “drowsiness is the kind 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're all sleepy.' Just hold on. Have some coffee and take a nap.'”

You may be able to shed some light on your symptoms by bringing loved ones to your appointments. Your doctor can explain why everyday strategies are not working for you and can explain why your sleepiness is not something that is under your control.

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

Find support

You may feel less alone if you connect with others who know what you are going through. “Especially because people who are diagnosed with idiopathic hypersomnia are something they've never heard of before,” Trotti says.

Seek support through national organizations like the Hypersomnia Foundation or online through social media. Ask your healthcare provider or social worker if there are groups in your area that can help.