How Is Idiopathic Hypersomnia Treated?

Idiopathic hypersomnia (IH) is a chronic sleep condition. People with IH have difficulty staying awake during the day, even after a full night's sleep. They may fall asleep accidentally during the day. Symptoms often start during young adulthood and change over time.1,2

There are not yet any approved treatments specifically for IH. Drugs approved for narcolepsy are often used to treat symptoms of IH. However, these treatments often do not work as well for people with IH as they do for people with narcolepsy.1,2

Since the cause of IH is still not fully understood, treatment focuses on improving symptoms. Because symptoms vary from person to person, treatments also vary based on specific symptoms.1,2

Non-drug treatments

Non-drug treatments are usually the first intervention for people with IH or narcolepsy. This includes lifestyle and behavior changes. However, these approaches do not seem to help people with IH. Unlike with narcolepsy, daytime naps do not seem to reduce symptoms of IH.1,2

Cognitive behavioral therapy may help people with IH cope. This type of therapy can help people learn how to reduce negative emotions in response to symptoms. Ongoing clinical trials are testing behavioral therapies in people with IH.3,4

Talk to your doctor about lifestyle changes that may reduce symptoms of IH. They may suggest:1

  • Developing a regular sleep schedule
  • Avoiding alcohol and drugs that affect sleep
  • Getting regular exercise
  • Maintaining a healthy diet

Medicines used to treat idiopathic hypersomnia

There are no treatments approved specifically for IH. However, people with IH may benefit from treatments approved to treat narcolepsy. The most common narcolepsy drugs used in IH work by promoting wakefulness.2,5

Wake-promoting drugs include stimulants and non-stimulants. Stimulants help reduce excessive daytime sleepiness (EDS) by keeping you alert during the day. Some stimulants approved for narcolepsy that may help people with IH include:3,4

  • DexedrineⓇ (dextroamphetamine) and other amphetamines
  • RitalinⓇ (methylphenidate)

Some non-stimulant drugs also promote wakefulness. These usually work by changing your dopamine levels. These include:1,2

  • ProvigilⓇ (modafinil)
  • NuvigilⓇ (armodafinil)
  • SunosiⓇ (solriamfetol)
  • WakixⓇ (pitolisant)

A few case studies and small trials have shown the benefits of modafinil in people with IH. Modafinil is the most commonly used medicine for IH. Modafinil and other medicines may reduce symptoms of IH. However, they do not seem to work as well as in narcolepsy. They may also have bothersome side effects, such as dizziness, nausea, and anxiety.1,3

We need larger clinical trials to understand how best to use modafinil and other medicines in IH.1,3

Other drugs to treat idiopathic hypersomnia

Some other narcolepsy drugs are emerging as treatments for IH. Researchers are still studying whether they may help reduce symptoms of IH. These drugs include:1,4

  • XyremⓇ (sodium oxybate)
  • Xywav™ (calcium, magnesium, potassium, and sodium oxybates)
  • BiaxinⓇ (clarithromycin)
  • Flumazenil

Sodium oxybate is also known as gamma hydroxyburate (GHB). It promotes deep sleep and improves daytime sleepiness. Small studies have shown that sodium oxybate may help people with IH as much as it helps people with narcolepsy. Possible side effects include nausea, dizziness, and headaches. Ongoing clinical trials are testing the effect of sodium oxybate in people with IH.3,6

XywavⓇ is an altered version of sodium oxybate that has much less sodium. In 2020, the U.S. Food and Drug Administration (FDA) approved Xywav to treat people with narcolepsy. Phase 3 clinical trials of Xywav showed that it also improves symptoms in people with IH. In August 2021, the FDA approved Xywav for IH, making it the first approved drug for treating idiopathic hypersomnia.4,7,8,9

Before beginning treatment for idiopathic hypersomnia, tell your doctor about all your health conditions and any other drugs, vitamins, or supplements you are taking. This includes over-the-counter drugs.

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Written by: Matt Zajac | Last reviewed: August 2021