Idiopathic Hypersomnia

What is idiopathic hypersomnia?

Idiopathic hypersomnia (IH) is a sleep disorder where you have an excessive need to sleep. You wake up very tired even after getting an adequate amount of sleep. “Idiopathic” means the cause is unknown.

If you have idiopathic hypersomnia, you probably won’t feel rested when you wake up, even after more than nine hours of sleep at night. You may need to set several alarms and drag yourself out of bed in the morning. You might take an afternoon nap to help you feel more alert, but you still feel tired when you wake up. Feeling tired during the day can interfere with your ability to function as expected.

A healthcare provider can help you manage the symptoms of this type of hypersomnia.

How rare is idiopathic hypersomnia?

Idiopathic hypersomnia affects an estimated 10 people out of every 100,000 in the United States annually.

What are the symptoms of idiopathic hypersomnia?

The symptoms of idiopathic hypersomnia include:

• Daytime sleepiness
• Sleeping more than 11 hours within 24 hours, including naps, or more than nine hours at night
• Difficulty waking up; feeling unrested or disoriented when waking up after sleeping through the night (sleep inertia)

These symptoms may make daytime functioning extremely difficult. Symptoms usually affect you a few times a week (or daily) for at least three months, after which a healthcare provider will make a diagnosis. In some cases, you may have symptoms for years before being correctly diagnosed.

When awake, in addition to feeling tired, you might also experience:

• Brain fog
• Confusion
• Depression
• Dizziness
• Headaches
• Irritability

What causes idiopathic hypersomnia?

The cause of idiopathic hypersomnia is unknown. Research is ongoing to learn more. Some studies suggest the following may play a role:

• Genetic variants (mutations). A gene variant may affect signaling and cell regulation within your brain, interfering with your sleep-wake schedule.
• An abnormal immune system response. Your immune system mistakenly targets healthy cells within your nervous system and sees them as a threat.

What triggers idiopathic hypersomnia?

Triggers are things that could cause symptoms to start or to increase. Idiopathic hypersomnia triggers may include:

• Sudden changes to your sleep-wake schedule
• Overexertion
• Undergoing general anesthesia for a procedure
• A virus
• Head trauma

What are the risk factors for idiopathic hypersomnia?

You may have a genetic predisposition for idiopathic hypersomnia that puts you more at risk of developing it. This means that hypersomnia or another sleep disorder may run in your biological family history.

What are the complications of idiopathic hypersomnia?

If you’re always tired, you likely can’t do things to the best of your ability. The following may be challenging for you:

• Functioning as expected during daytime hours (completing your daily routine, staying focused on a task, etc.)
• Maintaining relationships with loved ones
• Meeting obligations at work, school or in your personal time
• Balancing your mental health and emotional well-being

Activities requiring your full attention, like driving or operating heavy machinery, may not be safe. This can put you and others at risk of injury.

How is idiopathic hypersomnia diagnosed?

A healthcare provider will diagnose idiopathic hypersomnia after a physical exam and testing. During the exam, your provider will learn more about your symptoms. They may ask you to rank how sleepy you are by answering questions on the Epworth Sleepiness Scale assessment.

You may also need to keep a sleep journal for several weeks, to keep track of when you fall asleep and wake up. Your provider might also ask you to wear an actigraph device, which can record sleep times for you.

Testing may include sleep studies like a polysomnography or a multiple sleep latency test. Your provider will review your sleep study results and run additional testing to rule out conditions with similar symptoms.

Is there a cure for idiopathic hypersomnia?

There isn’t a cure for idiopathic hypersomnia, but treatment options are available to help you manage symptoms.

How is idiopathic hypersomnia treated?

Medications are usually successful at treating symptoms of idiopathic hypersomnia.

Cognitive behavioral therapy for hypersomnia (CBT-H) is a form of psychotherapy specifically designed to help with idiopathic hypersomnia. This, alongside medications, may help improve overall sleep quality and daily functioning.

Idiopathic hypersomnia medications

Medications to treat idiopathic hypersomnia may include:

• Central nervous system stimulants like amphetamines
• Non-amphetamine central nervous system stimulants, like modafinil
• Central nervous system depressants like sodium oxybate (FDA-approved)
• GABA receptor antagonists like flumazenil

Side effects of these medications vary based on the type. Talk to your healthcare provider about the medications you currently take to see if there are any drug interactions with a new medication they prescribe. Don’t make changes to your medication routine unless a healthcare provider approves it.

Your provider may ask you to complete the Epworth Sleepiness Scale before you begin treatment and again during treatment to assess how well the treatment is working.

What can I expect if I have idiopathic hypersomnia?

It’s easy to feel frustrated living with idiopathic hypersomnia. You consistently get hours of sleep each night but still feel tired during the daytime. This can make completing your daily routine, even getting to school or work on time, extremely challenging.

Your provider may recommend medications to help you feel more awake during the daytime. You might need to try different medications or doses to find what works best for your needs. Your provider will schedule regular appointments to monitor how treatment affects you.

When should I see a healthcare provider?

Visit a healthcare provider if you’re exhausted during the daytime after sleeping through the night. For example, you may fall asleep during daytime tasks, like in class, at work or when talking with friends. A healthcare provider can help you manage symptoms to feel more awake.

What questions should I ask my healthcare provider?

• What’s causing me to feel tired during the daytime?
• Do I need to change my sleep schedule?
• What type of treatment do you recommend?
• Are there side effects of the treatment?
• When should I take the medications you prescribed?