Living With Idiopathic Hypersomnia: Tips for Managing Excessive Daytime Sleepiness
The main symptom of idiopathic hypersomnia (IH) is excessive daytime sleepiness (EDS). This can make it hard to carry out basic tasks during the day. People with IH often feel sleepiness even after a full night of sleep.
There are not yet any approved medicines for IH. Narcolepsy medicines may reduce sleepiness for people with IH. Non-drug techniques may also help reduce sleepiness.
What is excessive daytime sleepiness?
About 20 percent of people worldwide experience EDS. EDS is an overwhelming need to sleep when you should be awake and alert. EDS is also called hypersomnia. It is not the same as fatigue. Fatigue refers to a lack of physical or mental energy.1
EDS is the main symptom of IH. Even after a normal night of sleep, people with IH feel sleepy during the day. Doctors diagnose IH based on the presence of EDS for at least 3 months and no signs of narcolepsy or other causes.2
We do not yet know what causes IH. We also do not know why IH causes EDS. Experts have studied a few possible reasons:1,3
- Certain triggers, such as changes in sleep habits, brief periods of insomnia, or mild head trauma
- Genetic risk factors that affect the immune system
- Altered levels of hypocretin or other brain chemicals that affect sleep
How does excessive daytime sleepiness affect quality of life?
Sleepiness can reduce quality of life and daytime functioning. For example, people with IH have a higher risk of symptoms of depression. EDS can make it hard to focus at work or in school. It can also affect relationships and social activities.2,4
People with IH have a higher risk of car accidents. Other activities, such as using heavy machinery, may also be less safe for people with IH. Treatments may not fully reduce this risk. Your doctor can perform wakefulness tests to predict driving performance. This can help you decide what activities are safe.2,5
What drugs treat excessive daytime sleepiness?
The U.S. Food and Drug Administration (FDA) has not yet approved treatments for EDS in people with IH. Current research is testing whether narcolepsy drugs help people with IH. For example, some studies have shown that ProvigilⓇ (modafinil) reduces sleepiness in IH. However, it does not work as well as it does for people with narcolepsy.1
Other medicines that may treat EDS in people with IH include:1
Many of these medicines have serious side effects. For example, amphetamines carry a risk for abuse and heart-related side effects. Modafinil and armodafinil may interfere with certain types of birth control. Talk to your doctor about these risks before starting treatment. Together, you can decide which drugs may be right for you.1
What are other tips for managing excessive daytime sleepiness?
Most people with IH also use non-drug strategies to manage EDS. Improving the quality of nighttime sleep is one way to manage EDS. Other ways to improve your sleep include:6
- Ensuring the room is dark and quiet
- Using the bed only for sleep
- Regularly exercising during the day
- Reducing alcohol and drugs
- Having a relaxing bedtime routine
- Avoiding electronics before going to sleep
- Finding a relaxing activity to do if you cannot fall asleep
Some other ways to stay awake during the day include:2
- Drinking coffee or other beverages with caffeine
- Taking daytime naps
- Maintaining a healthy diet with scheduled mealtimes
- Keeping your workspace well-lit or playing upbeat music
- Practicing yoga and mindfulness
However, many people with IH report that these strategies do not work well. These management strategies seem to work better for people with narcolepsy. Many people with IH report trying to stay busy to distract themselves from sleepiness. This may lead to fatigue and exhaustion. Talk to your doctor or a sleep specialist about strategies to try.2
Support groups can be good places to talk to people with similar experiences. They can share which management strategies have worked for them. One advocacy group that supports people with IH is Hypersomnia Foundation. You can also connect with other community members at Narcolepsy.Sleep-Disorders.net to learn from others and share your experiences.
Do you feel that your doctor understands narcolepsy?