FAQs
Your questions about Idiopathic Hypersomnia (IH) and XYWAV answered
Idiopathic Hypersomnia (IH) FAQs
IH is a rare central sleep disorder. Idiopathic means the cause is unknown. Central means it is related to how the brain works.
Some key symptoms of IH are excessive daytime sleepiness, sleep inertia (severe grogginess or confusion when waking up), cognitive impairment (brain fog), and long sleep time (11 hours or more).
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.
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.
Difficulty focusing, thinking clearly, or remembering things, often due to excessive daytime sleepiness. This is commonly described as experiencing "brain fog."
The ability to sleep for an unusually long period of time, often 11 hours or more in a 24-hour period.
Healthcare providers are the most equipped to help you understand your options for treating your symptoms of IH.
You can use our symptom quiz to assess how severe your symptoms are and help prepare you to talk with your doctor.
Your doctor may use the Epworth Sleep 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.
XYWAV FAQs
Use our Find a Doctor locator tool to find a doctor in your area who can determine if XYWAV is the right treatment for your IH.
Take a quiz that will help you discuss the severity of your IH symptoms with your doctor and use the Doctor Discussion Guide to help you ask the right questions.
The most common side effects in adult patients treated with XYWAV in the IH clinical 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.
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.
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 you nightly XYWAV, they will give you detailed instructions on how to take your prescribed dose(s). You will also receive additional materials to ensure that you understand how to prepare and take your nightly XYWAV dose(s).
The Medication Guide For Detailed Instructions
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 (just at bedtime for adults with IH). 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.
The Medication Guide For Detailed Instructions
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.
The Medication Guide For Detailed Instructions
Support FAQs
Jazz Pharmaceuticals is committed to supporting access for people who are prescribed XYWAV.
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 that gives you individualized support at your fingertips. It is free to access, helps you get started and track your symptoms, includes instructions for use, support programs, treatment tips, and more, and supports you through your treatment.
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.
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 answering your questions about living with IH, and how XYWAV affected their lives.
Keep learning about IH and XYWAVIf you’re managing your IH with workarounds but still living with symptoms, it may be time to talk to a specialist about XYWAV.
Get information and stay supported
From learning more about your IH, to helping start the conversation with your doctor, and exploring XYWAV as a treatment option—take charge of your journey with support every step of the way.