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 may change over time.^1,2

Drugs approved for narcolepsy are often used to treat symptoms of IH. But medicines work differently for different people. It may take some trial and error to find the right combination of medicines. There is 1 drug, Xywav®, approved specifically for adults living with idiopathic hypersomnia.^1-3

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 the specific symptoms you have.^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. Typically, people with narcolepsy find naps to be more restorative than people with IH do. But many people with IH still benefit from napping.^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:^1,5

• Developing a regular sleep schedule
• Avoiding alcohol and drugs that affect sleep
• Getting regular exercise
• Maintaining a healthy diet. There is some evidence that a gluten-free diet may help with sleepiness, but more research is needed.

Medicines used to treat idiopathic hypersomnia

There is 1 drug approved specifically for IH. That drug is: Xywav (calcium, magnesium, potassium, and sodium oxybate). Xywav is approved to treat adults with IH.³

Some people with IH may benefit from treatments approved to treat narcolepsy. The most common narcolepsy drugs used in IH work by promoting wakefulness.^2,6

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), Adderall®, 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 a commonly used medicine for IH. Modafinil and other medicines may reduce symptoms of IH. They may also have bothersome side effects, such as dizziness, nausea, and anxiety.^1,3

Larger clinical trials are needed 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 possible treatments for IH. These drugs include:^1,4

• Xyrem® (sodium oxybate)
• Biaxin® (clarithromycin)
• Flumazenil

Sodium oxybate is also known as gamma hydroxybutyrate (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.^3,7

Xywav is a lower-sodium version of Xyrem (sodium oxybate). The FDA approved Xywav for IH in mid-2021, making it the first approved drug for treating idiopathic hypersomnia.^3,8

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.