Living With Narcolepsy
Consider your overall health when managing your narcolepsy
Learning about narcolepsy
Narcolepsy is a chronic, potentially disabling condition. Narcolepsy type 1 (with cataplexy) is caused by the loss of a specific type of cell in the brain called hypocretin neurons, which are involved in helping to maintain the balance between sleep and wake. Although the cause of narcolepsy type 2 (without cataplexy) is less well understood, evidence suggests that hypocretin dysfunction plays a role in narcolepsy type 2 as well.
The symptoms of narcolepsy can overlap with the symptoms of other disorders, which can make diagnosis difficult. In fact, some patients see multiple doctors before getting a diagnosis and may not get a diagnosis for more than 10 years after the onset of symptoms.
Since there is no cure for narcolepsy, long-term management for symptoms, such as EDS and cataplexy, may be needed.
- EDS is the uncontrollable need to sleep during the day. Everyone with narcolepsy has EDS.
- Cataplexy is a common symptom of narcolepsy and can be described as when your muscles suddenly become weak or go limp when you feel a strong emotion. About 70% of people with narcolepsy are believed to have cataplexy.
A long-term management plan may be needed, so it is important to keep your overall health in mind
While treating your symptoms is top-of-mind, you should be aware of other health conditions.
A study showed that certain medical conditions are more frequently observed among people with narcolepsy compared to the general population. These conditions should be considered when developing a long-term management plan.
A study has shown:
In a study, people with narcolepsy and people in the general population were interviewed regarding sleeping habits, health, medical conditions and medications, sleep disorders, and mental disorders. People with narcolepsy were more likely to report having other health conditions, including heart disease, high cholesterol, depression, and anxiety.
In the study, people with narcolepsy were found to be more likely to have certain other health conditions compared to the general population.
For example, people with narcolepsy were about 2 times more likely to have heart disease. High cholesterol, depression, and anxiety were also found to be more common among people with narcolepsy.
You may be able to modify certain risks for cardiovascular disease
Some risk factors for cardiovascular disease are considered “modifiable.” This means you may be able to address them through lifestyle changes. These risk factors include:
- Physical activity
- Dietary fiber
- Body weight
- Sodium intake
While sodium typically comes from what you eat and drink, it can also come from certain medications.
Think about more than narcolepsy symptoms when working with your doctor on a management plan.
Talk to your doctor about all aspects of your health
When creating a narcolepsy management plan with your doctor, be sure to discuss all aspects of your overall health. Tips include:
Discuss your exercise habits and lifestyle.
Talk about other conditions you may have or may be at risk for.
XYWAV™ (calcium, magnesium, potassium, and sodium oxybates) oral solution, 0.5 g/mL total salts (equivalent to 0.413 g/mL of oxybate) is a prescription medicine used to treat the following symptoms in people 7 years of age or older with narcolepsy:
- sudden onset of weak or paralyzed muscles (cataplexy)
- excessive daytime sleepiness (EDS)
Important Safety Information
WARNING: Taking XYWAV with other central nervous system (CNS) depressants such as medicines used to make you or your child fall asleep, including opioid analgesics, benzodiazepines, sedating antidepressants, antipsychotics, sedating anti-epileptic medicines, general anesthetics, muscle relaxants, alcohol, or street drugs, may cause serious medical problems, including trouble breathing (respiratory depression), low blood pressure (hypotension), changes in alertness (drowsiness), fainting (syncope), and death.
The active ingredient of XYWAV is a form of gamma hydroxybutyrate (GHB). Abuse or misuse of illegal GHB alone or with other drugs that cause changes in alertness (or consciousness) has caused serious side effects. These effects include seizures, trouble breathing (respiratory depression), changes in alertness (drowsiness), coma, and death. Call your doctor right away if you or your child has any of these serious side effects.
Because of these risks, you have to go through the XYWAV and XYREM REMS Program to have your or your child’s prescription for XYWAV filled.
Do not take XYWAV if you take or your child takes other sleep medicines or sedatives (medicines that cause sleepiness), drinks alcohol, or has a rare problem called succinic semialdehyde dehydrogenase deficiency.
Keep XYWAV in a safe place to prevent abuse and misuse. Selling or giving away XYWAV may harm others, and is against the law. Tell your doctor if you have ever abused or been dependent on alcohol, prescription medicines, or street drugs.
Anyone who takes XYWAV should not do anything that requires them to be fully awake or is dangerous, including driving a car, using heavy machinery, or flying an airplane, for at least 6 hours after taking XYWAV. Those activities should not be done until you know how XYWAV affects you or your child.
XYWAV can cause serious side effects, including the following:
- Breathing problems, including slower breathing, trouble breathing, and/or short periods of not breathing while sleeping (sleep apnea). People who already have breathing or lung problems have a higher chance of having breathing problems when they use XYWAV.
- Mental health problems, including confusion, seeing or hearing things that are not real (hallucinations), unusual or disturbing thoughts (abnormal thinking), feeling anxious or upset, depression, thoughts of killing yourself or trying to kill yourself, increased tiredness, feelings of guilt or worthlessness, or difficulty concentrating. Tell your doctor if you or your child have or had depression or have tried to harm yourself or themselves. Call your doctor right away if you have or your child has symptoms of mental health problems or a change in weight or appetite.
- Sleepwalking. Sleepwalking can cause injuries. Call your doctor if you or your child starts sleepwalking. Your doctor should check you or your child.
The most common side effects of XYWAV in adults include headache, nausea, dizziness, decreased appetite, parasomnia (a sleep disorder that can include abnormal dreams, abnormal rapid eye movement (REM) sleep, sleep paralysis, sleep talking, sleep terror, sleep-related eating disorder, sleep walking, and other abnormal sleep-related events), diarrhea, excessive sweating (hyperhidrosis), anxiety and vomiting.
The most common side effects of XYWAV in children include bedwetting, nausea, headache, vomiting, weight decrease, decreased appetite, and dizziness.
XYWAV can cause physical dependence and craving for the medicine when it is not taken as directed. These are not all the possible side effects of XYWAV.
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.