Oxybates to Treat Idiopathic Hypersomnia

Living with idiopathic hypersomnia (IH) means dealing with extreme daytime sleepiness. You might sleep for long periods at night but still wake up feeling tired. This is often called sleep inertia or "sleep drunkenness." There are treatments available to help manage these symptoms. One class of drugs used for sleep disorders is called oxybates.¹

How do oxybates work?

Oxybates are central nervous system depressants. This means they slow down brain activity. Doctors believe these drugs work on specific chemicals in the brain to improve sleep. They help people get better rest at night. Better sleep at night can help you stay awake during the day.¹

Examples of oxybates

There are different types of oxybates. The US Food and Drug Administration (FDA) has approved specific drugs for different sleep disorders.¹

Mixed-salt oxybates (Xywav®)

Xywav is a mixture of calcium, magnesium, potassium, and sodium oxybates. It is currently the only drug approved by the FDA specifically to treat idiopathic hypersomnia in adults. It is a liquid that you drink. This drug contains much less sodium than older oxybate drugs. This is helpful for people who need to limit their salt intake.^1,2

Your doctor may prescribe a once- or twice-nightly regimen of the oral drug. You should be closely monitored to determine if the dose is right for you.^2,3

Immediate-release sodium oxybate (Xyrem®)

Xyrem is a formulation of sodium oxybate. It is FDA-approved to treat narcolepsy. It is not currently FDA-approved for IH. However, doctors sometimes prescribed it for IH before Xywav was approved. Like Xywav, it is a liquid taken in 2 separate doses at night. It has a high sodium content.^1,4

Extended-release sodium oxybate (Lumryz®)

Lumryz is a newer form of sodium oxybate. The FDA approved it in 2023 for the treatment of narcolepsy. It is not currently FDA-approved for IH. This drug is an extended-release formula. This means you only have to take it once, usually at bedtime. You do not have to wake up in the middle of the night for a second dose.^1,5

What are the possible side effects?

Side effects can vary depending on the specific treatment or drug you are taking. Common side effects of oxybates include:^1,3-5

• Nausea
• Headache
• Dizziness
• Anxiety
• Insomnia
• Decreased appetite
• Excessive sweating (hyperhidrosis)
• Vomiting

Serious side effects can also happen. These may include breathing problems, mental health changes, or sleepwalking.^3-5

Oxybates have a boxed warning, the strictest warning from the US Food and Drug Administration (FDA). They have this warning because they can cause slow or shallow breathing (respiratory depression). Abuse or misuse of these drugs can lead to serious breathing problems, seizures, loss of consciousness, or death.^3-5

These are not all the possible side effects of oxybates. Talk to your doctor about what to expect when taking an oxybate. You should also call your doctor if you have any changes that concern you when taking an oxybate.

Other things to know

Because of the potential risks of CNS depression and abuse and misuse, you can only get these drugs through a special program. This is called a Risk Evaluation and Mitigation Strategy (REMS). You must get the medicine from a certified pharmacy. Your doctor must also be certified to prescribe it.^1,2

Do not drink alcohol when taking oxybates. Alcohol can make the side effects worse. It can lead to dangerous breathing problems.^3-5

Do not operate heavy machinery, drive a car, fly an airplane, or do anything dangerous for at least 6 hours after taking the drug. As with any drug, take only as prescribed by your doctor.^3-5

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.