Frequently asked questions about XYWAV

IH is a rare central sleep disorder. “Idiopathic” means the cause is unknown. “Central” means it is related to how the brain works.

While some people think of IH as just being 'really sleepy' during the day, it actually affects how you feel and function during the day and at night. There are a range of symptoms—from the brain fog of cognitive impairment, long sleep times (11+ hours) to the intense struggle to wake up, known as sleep inertia. Use our symptoms quiz to assess how your symptoms are affecting daily life.

This refers to feeling overwhelmingly sleepy or drowsy during the day, even after a full night’s sleep. This is the most common symptom of IH. Learn more about EDS.

The state of severe grogginess, confusion, or disorientation upon waking, regardless of the amount of sleep you get or how many alarms you set. Symptoms may include feeling irritable or clumsy for hours after waking up. Learn more about sleep inertia.

Difficulty focusing, thinking clearly, or remembering things. This is commonly described as experiencing "brain fog." Learn more about cognitive impairment.

The ability to sleep for an unusually long period of time, often 11 hours or more in a 24-hour period, is considered long sleep time.

Take this short quiz to better understand how long sleep time may be affecting your daily life. Learn more about long sleep time.

Idiopathic Hypersomnia is typically diagnosed by a sleep specialist, based on a detailed review of your symptoms and a sleep study. It’s important to see a sleep specialist who understands the full impact of IH and can help you manage the symptoms. Find a sleep specialist who may be right for you.

You can use our symptom quiz to assess how severe your symptoms are and help prepare you to talk with a sleep specialist.

Your doctor may use the Epworth Sleepiness Scale (ESS) to assess your daytime sleepiness, and the Idiopathic Hypersomnia Severity Scale (IHSS), which helps determine the severity and frequency of your IH symptoms. Be sure to share the results with your doctor.

It’s been shown that people with IH have a higher risk for heart, metabolic, and kidney diseases compared to people with IH. One risk factor is sodium consumption. Eating or consuming less sodium can help reduce the risk for high blood pressure, heart disease and stroke.

XYWAV is the only low-sodium* oxybate that's FDA-approved for adults with Idiopathic Hypersomnia.

*XYWAV contains 131 mg of sodium at the 9-g nightly dose.

Use our Find a Specialist locator tool to find a specialist in your area who you can ask about XYWAV.

Yes. In clinical trials, about 50% of patients continued taking their daytime stimulants or wake-promoting agents while also taking XYWAV.

Sharing how your symptoms are affecting daily life should be an important part of the conversation with your doctor. Plan for the next conversation with a specialist by using this personalized guide.

One risk factor for cardiovascular disease is sodium consumption. Reducing excessive sodium intake can help reduce the risk for high blood pressure, heart disease, and stroke. XYWAV is the only low sodium oxybate approved by the FDA, containing 131 mg of sodium at the maximum recommended nightly dose.

Learn more about low sodium XYWAV.

XYWAV contains sucralose.

The most common side effects in adult patients treated with XYWAV in the IH pivotal study included nausea, headache, dizziness, anxiety, insomnia, decreased appetite, excessive sweating (hyperhidrosis), vomiting, diarrhea, dry mouth, parasomnia (a sleep disorder that can include abnormal dreams, abnormal rapid eye movement sleep, sleep paralysis, sleep talking, sleep terror, sleep-related eating disorder, sleepwalking, and other abnormal sleep-related events), sleepiness (somnolence), fatigue, and tremor. In patients who remained on treatment, side effects tended to occur early and diminish over time.

These are not all the possible side effects of XYWAV. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. See the possible side effects of XYWAV.

After starting XYWAV, it may take some time for you and your doctor to determine the right dose, and to manage your symptoms. Your doctor will decide on a starting dose. If needed, they may adjust your dose or dosing routine. For more information about dosing, visit the Taking XYWAV page.

Although the exact way XYWAV works is unknown, it is thought to work during sleep to help treat IH symptoms.

XYWAV oral solution contains oxybate, a central nervous system (CNS) depressant. XYWAV contains a mixture of calcium oxybate, magnesium oxybate, potassium oxybate, and sodium oxybate. A 9 gram/night dose contains 687 mg of calcium, 182 mg of magnesium, 642 mg of potassium, and 131 mg of sodium. XYWAV also contains an artificial sweetener called sucralose. XYWAV does not contain any ingredient made from a gluten-containing grain (wheat, barley, or rye).

If your doctor prescribes nightly XYWAV, you’ll receive detailed instructions on how to prepare and take your dose(s). A Nurse Educator in your area may also be available to meet in person or virtually to answer questions and keep you on track with treatment.

Please refer to the XYWAV instructions for use found within the Medication Guide for detailed instructions about preparing and taking XYWAV.

XYWAV is a liquid taken at bedtime. It is often taken twice nightly (at bedtime and again 2.5 to 4 hours later). It can also be taken once nightly at bedtime. Your doctor may adjust your dose at first to find what works best for you. Be open and share with your doctor how you’re feeling as your dose changes.

Learn more about dosing. Please refer to the XYWAV Instructions for use found within the Medication Guide and for detailed information about preparing and taking XYWAV.

You will not be able to take other sleep medicines or sedatives (medicines that cause sleepiness) or drink alcohol while on XYWAV. Your doctor will discuss this with you at length and can answer any specific questions you might have.

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Especially, tell your doctor if you take other medicines to help you sleep (sedatives).

Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

It’s easy to understand why you might worry about taking your second dose. You may want to set an alarm clock to help you wake up for your second dose of XYWAV. If you miss your second dose, skip that dose. Do not take XYWAV again until the next night. Never take 2 doses of XYWAV at one time. If you have questions about how taking XYWAV may impact you, please talk to your doctor.

Please refer to the XYWAV instructions for use found within the Medication Guide for detailed instructions.

Jazz Pharmaceuticals is committed to supporting access for people who are prescribed XYWAV. Explore the financial assistance options for qualified patients.

Because of the risk of CNS depression, abuse, and misuse, XYWAV is available only through a restricted distribution program called the XYWAV and XYREM REMS. You must be enrolled in this program to receive XYWAV.

In addition, the Certified Pharmacy is the only pharmacy in the United States that is permitted to fill your XYWAV prescription and send it directly to you. Call the Certified Pharmacy at 1-866-997-3688 for more information.

myWAV is an app helps you get started on important steps such as, tracking your XYWAV shipments and important treatment calls in one place, organizing your daily schedule, insurance information, treatment tips, and more.

You will also have a JazzCares^® Nurse Case Manager who will be with you from the beginning of your treatment experience and will help answer questions you may have along the way.

To help you get the most of your treatment with XYWAV it is important to sign up for JazzCares. JazzCares is the XYWAV support program that helps you with access to treatment, financial support for those eligible, and other personalized resources to help you manage your care with XYWAV. Discover everything JazzCares has to offer.

The XYWAV Mentor Program connects you 1‑on‑1 with someone who has firsthand experience taking XYWAV for IH. XYWAV Patient Mentors listen to you and support you by providing practical tips and meaningful insight, by sharing their experiences.

Because of the risks of central nervous system (CNS) depression, abuse, and misuse, all patients who are prescribed XYWAV must be enrolled in the XYWAV and XYREM REMS. Before you receive XYWAV, your doctor and a pharmacist will make sure you understand how to take XYWAV safely and effectively. Before you get started you will get two calls:

1. Connect with your JazzCares Nurse Case Manager:

   Your JazzCares Nurse will call to welcome you, help with enrollment in the XYWAV and XYREM REMS, answer questions about the prior authorization process, verify your insurance coverage, and discuss your eligibility for cost‑savings programs.
2. Speak with the Certified Pharmacy and arrange your shipment:

   A pharmacist is also available 24/7 to answer any questions you may have about your prescription through the specialty pharmacy that dispenses XYWAV, called the Certified Pharmacy. 
   Call the Certified Pharmacy at 1-866-997-3688 for more information.

More information about the REMS can be found at XYWAVXYREMREMS.com. If you have any questions, you can ask your doctor or call XYWAV and XYREM REMS specialists at 1-866-997-3688. You can visit the Getting XYWAV page for more information.

To become a mentor in the XYWAV Mentor Program, you typically need to be someone who has firsthand experience taking XYWAV for IH and is willing to support others who are navigating their own IH journey. The program connects patients one-on-one with peers who can listen, share practical tips, and offer insight based on their own experiences with IH and XYWAV. Become a mentor today.