You're Just Lazy — & Other Common Misconceptions About Narcolepsy

There’s a case to be made that fatigue is merely a symptom of being alive in the year 2023. Rarely do we react when friends complain of exhaustion — hardly an original grievance. We’re exhausted, too (duh). Not exactly cause to see a doctor, right? 

Well…

“Most people don’t have the thought, ‘Hey, I’m really tired, I must have narcolepsy,’” says Dr. Chris Winter, Charlottesville-based neurologist and certified sleep specialist. “A lot of people think about narcolepsy in this outsized, comic-book way. They’ll think, ‘I’ve never fallen sound asleep on the court while playing a game of tennis, so it can’t be narcolepsy.’”

On the contrary, the realities of narcolepsy can be far less apparent. Simply put, the condition boils down to chronic, excessive exhaustion: Kids who fall asleep in class, adults who feel the urge to nap during the workday, folks who miss their stops on city buses due to impromptu slumber. “Before my narcolepsy diagnosis, I would wake up late, and I would be in a fog all day,” says Oscar,* a patient with narcolepsy. “When I was in college, I would often miss my morning lectures or be late for them.”

On top of our cinematic caricatures of narcolepsy, there are a number of other widely held misconceptions about the condition — which is why so many cases are often left undiagnosed. “I’ve had parents who tell me, after learning of their child’s narcolepsy diagnosis, ‘I've just been such a jerk to my son or my daughter. I kept telling them, you're lazy, you need to motivate yourself, why can't you be like your brother?’” says Dr. Winter. “But the reality is, they have a condition. They need more support. It’s not their fault.”

So, in the interest of helping break down some of the mystery, we partnered with Dr. Winter and Jazz Pharmaceuticals to outline some of the most harmful myths about the diagnosis — and how we can correct them. 

“When you read articles about sleep, most of them focus on combatting insomnia, or getting a better night’s sleep,” says Dr. Winter, “If you’re excessively sleepy, folks will look at you and think, that’s a gift. You’re a superstar sleeper. But the reality is, if you can fall asleep 30 seconds into a Coldplay concert, your fatigue is out of your control.”

But as he sees it, we’re far more culturally adjusted to celebrating those who “burn the midnight oil,” so to speak. We malign laziness, because it often stems from a lack of motivation. Narcolepsy, however, is a medical condition that presents as fatigue that cannot be overcome, no matter how deeply self-motivated or ambitious a person may be. Which is to say, it requires treatment and support — rather than social shaming.

According to Dr. Winter, a narcolepsy diagnosis does not have to disrupt all your professional and personal ambitions. “The lion's share of what we're doing for our patients is just getting them educated. With narcolepsy, you can still tackle normal tasks, you can travel, you can get married, you can have babies,” says Dr. Winter. “That said, if your diagnosis is taking away from your daily life, or getting in the way, it may be essential to talk to your doctor about your options.” All in all, however, Dr. Winter explains that it’s all about educating people about the condition and helping them determine how they’d like to proceed. 

“One major misconception about narcolepsy patients is that they’re always young adults,” says Dr. Winter. “When you get to be old and you fall asleep at dinner, it's kind of cute, so nobody cares. Everyone’s like, ‘Aw, look at grandpa.’ And the same is true for children. When they’re excessively sleepy, nobody thinks to visit a doctor.” That said, narcolepsy has no typical host — and it’s never too late to visit a doctor about your fatigue.

According to Dr. Winter, undiagnosed narcolepsy often leads to self recrimination. Folks conceptualize themselves as lazy or incapable — rather than acknowledging that their fatigue is due to a legitimate medical condition — and thus, out of their hands. “The most important thing is getting the word out,” he says. “We need to help people come to terms with the fact that their fatigue is no fault of their own.”

Narcolepsy is a condition, rather than an infection or an illness — which is to say, there is no “cure.” That does not mean, however, that narcolepsy cannot be treated through everyday management. “Choosing the right medication for a patient with narcolepsy is certainly a team effort,” says Dr. Winter. “I come to the table with a certain degree of expertise about the condition, but the patient knows themselves better than I'll ever know them. So the real art is making the patient feel like they're involved in the choice.”

Common prescriptions used to combat narcolepsy include various stimulants and amphetamine-based drugs. For patients 7 years and older with cataplexy and/or excessive daytime sleepiness, there’s also Xywav (calcium, magnesium, potassium, and sodium oxybate), the first and only FDA approved low-sodium oxybate. For context, cataplexy is a sudden loss of muscle tone, or a feeling of weakening while a person is awake — and it arises solely as a complication of narcolepsy. “About 70% of narcolepsy patients have some degree of cataplexy. So one aspect of choosing the right medication is noting whether or not we need to worry about cataplexy as well as excessive sleepiness,” says Dr. Winter. “If a patient says, ‘I tend to lose muscle tone when I laugh all the time and it’s embarrassing,’ we may want to utilize a medication like Xywav to offset that symptom.”

That said, prescribing medication is a nuanced process: Dr. Winter works with his patients to assess what treatments make sense with their lifestyles, what prescriptions their insurance plans will cover, and their ages. Additionally, an important part of any conversation around starting a new treatment includes discussing potential side effects and who should or shouldn't take the medication. For example, Xywav may cause serious side effects including Central Nervous System (CNS) depression, abuse and misuse, breathing problems, mental health problems, and sleepwalking. People who take other sleep medicines or sedatives, drink alcohol, or have a rare problem called succinic semialdehyde dehydrogenase deficiency should not take Xywav. Additional safety information for Xywav can be found below. Moreover, the journey doesn’t end when a medication is prescribed: There are regular check-ins to gauge whether a patient would like to swap prescriptions, alter dosages, or cease taking medication on the whole.  For Xywav, due to the risk of CNS depression and abuse and misuse, there is also a restricted distribution program, called the XYWAV and XYREM REMS, that patients must enroll in in order to get their prescription filled. 

“You can absolutely say that there’s a misperception among narcolepsy patients that their sleepiness is not putting them at risk for anything else besides falling asleep at the wheel of a car or nodding off during a boring art history lecture,” says Dr. Winter. But in reality, there are a number of other important health risks to take into consideration, beyond potential commercial vehicle calamities. As mentioned, it’s important to monitor for cataplexy — but additionally, narcolepsy carries the risk of cardiovascular complications as well. According to Dr. Winter, narcolepsy can sometimes lead to the increased prevalence of conditions like obesity, hypertension, and diabetes — all of which increase an individual’s risk for cardiovascular (CV) events (think: strokes or heart attacks). In fact, per a study that compared 9,312 adults with narcolepsy to 46,559 similar adults who do not live with the sleep disorder, people with narcolepsy generally face 2.5x greater odds of suffering a stroke in their lifetime.

But fear not: There are lifestyle solutions that can be implemented to help lower CV risk. “Even when my patients are young and in great shape, I’ll recommend making certain lifestyle adjustments, like exercising, eating a heart-healthy diet, and watching sodium intake,” says Dr. Winter. “For the general population, the American Heart Association recommends an ideal limit of 1,500 mg of sodium a day for most adults, and even cutting back by 1,000 mg a day can improve heart health.”  When choosing an oxybate, he recommends Xywav because it carries 92% less sodium than Xyrem (sodium oxybate) oral solution, a high-sodium oxybate (131 mg vs 1640 mg, respectively, in a 9-g dose, which means ~1509 mg less sodium per night). 

“In addition to eating healthy, I try to stay as active as possible,” Oscar* says. “I work out every day, whether it's hiking, running, going to the gym, or playing hockey.”

*Last name is withheld to protect the identity of the patient

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 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. XYWAV can cause sleepwalking, which can cause injuries. Call your doctor if this occurs.

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 XYREM (which also contains oxybate like XYWAV) in children include nausea, bedwetting, vomiting, headache, weight decrease, decreased appetite, dizziness, and sleepwalking.

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.

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)

Please see full Prescribing Information, including BOXED Warning, and Medication Guide.