Low prescribing rates persist even as evidence supports benefit, pointing to missed conversations, unclear expectations, and fragile early treatment periods.
By Risa Kerslake, RN, BSN
It’s not unheard of for a sleep medicine clinician to go their entire career without ever treating a person with narcolepsy, a sleep disorder with a prevalence in the United States of about 200,000.1 In addition, not all clinicians have experience prescribing sodium oxybate, a central nervous system depressant with a US Food and Drug Administration-required Risk Evaluation and Mitigation Strategy safety program, used to treat excessive daytime sleepiness and cataplexy in patients with narcolepsy.
According to a recent survey of adults with narcolepsy, just 39% of the 82 respondents seeing a healthcare provider had discussed oxybates with their providers.2 This is perplexing given the data showing the efficacy of oxybates—which include the brand names XYREM, XYWAV, and LUMRYZ—on a variety of narcolepsy symptoms. Some sleep clinicians are learning more about why oxybates are underused and helping other providers and patients set realistic expectations.
“There are a lot of negative connotations with it. But in terms of efficacy, patient satisfaction, and outcomes, it tends to be one of the most effective solutions we have,” says Asim Roy, MD, medical director of the Ohio Sleep Medicine Institute.
The First Few Weeks
In a post-hoc analysis of the phase 3 REST-ON trial of LUMRYZ, investigators, including Roy, reported efficacy as early as the first and second weeks, with improvements in sleep quality within the first week of treatment. By week two, patients started seeing noticeable improvements in daytime sleepiness, with progressively stronger efficacy by week three and beyond. Cataplexy and daytime sleepiness may take longer to improve.3
Meanwhile, side effects such as nausea, dizziness, or headache were more common in the first week—potentially making for a rough start.3
It’s also a commonly held belief that oxybates reach efficacy at a rate similar to stimulants. “Stimulants tend to work more quickly and immediately. That can create this false sense that oxybates will work just as quickly, and it’s not often the case,” Roy says.
However, as with many medications, some patients discontinue therapy soon after initiation because they haven’t been fully informed about what to expect, according to Nancy Foldvary-Schaefer, DO, MS, director emeritus of the Cleveland Clinic Sleep Disorders Center and professor of neurology at the Cleveland Clinic.
Managing Expectations
Sodium oxybate includes side effects such as nausea, vomiting, dizziness, headaches, and enuresis. “It’s a challenging drug. This is not a typical treatment presentation that patients have experienced already,” says Maggie Lavender, MSN, APRN, FNP-C, of Comprehensive Sleep Medicine Associates. “If I were a patient with no medical knowledge and my provider said they were starting me on sodium oxybate with no further discussion of expectation, and left me to look up all the information on it, I would say, ‘no way.’”
Narcolepsy advocate Julie Flygare has taken XYREM, a twice-nightly formulation of sodium oxybate, for almost two decades. “People think it’s going to knock you out and you’re going to be out for four hours—or with LUMRYZ [once-nightly sodium oxybate] for eight— and you don’t want to have the expectation that the medication is going to put you to sleep like that,” notes Flygare, president and CEO of patient advocacy organization Project Sleep.
For some patients, even hearing that they’ll need to wake in the middle of the night after the first XYREM dose is enough to put them off from the medication altogether, says W. Christopher Winter, MD, owner of Charlottesville Neurology and Sleep Medicine. “This drug class has always had a cloud of mystery and misunderstanding around it that can amplify patient anxiety.” But Winter says it can be an effective and life-saving drug, with low reports of significant reactions.
Developing Rapport Early
Before treatment discussion, Lavender stresses the importance of developing a trusting rapport—beginning in the diagnostic phase—empowering patients by giving them the knowledge and the ability to actively participate in their treatment plan. “I find patients will work better through those first two weeks to three months time period of a medicine if I’ve better prepared them for what to possibly expect,” she says.
For Foldvary-Schaefer, educating patients multiple times before they take the first dose helps patients and their loved ones be on the same page. “After the first education, we wait to hear from the patient that they have the drug in hand, then our support staff will re-educate about use and safety over the phone, or I’ll see them in the clinic if they have more questions or concerns,” she says. Often, family members aren’t in the room when the prescription is written, and they may have questions or concerns later, especially if they’ll be assisting with nighttime dosing.
Close Communication
In busy practices, it can be difficult for clinicians to follow up with patients within two weeks or a month of starting sodium oxybate. If there are time constraints, support staff can be the point of contact for patients.
At minimum, Lavender recommends, patients should be provided with contact information to follow up with their clinician in the first few weeks. “For sure, if you start any type of treatment, that patient needs to be seen within four to six weeks. Patients in general have contact with providers to get new scripts of Adderall every month, so for a medicine this serious, why are we not making it a priority to be in contact with these patients?”
Encourage Peer Support
Support for patients with narcolepsy can and should extend beyond the walls of a provider’s office. Flygare and co-investigators recently conducted a survey of 1,308 individuals with narcolepsy type 1, type 2, and idiopathic hypersomnia to evaluate factors associated with feeling supported in adjusting to life with their diagnosis. At diagnosis, over 91% didn’t know anyone else with their condition, even though this is linked with feeling supported. “Clinicians should assess for social support and assist with resource identification,” states a paper about the study.4
“I think that doctors may feel worried that people are giving medical advice. But you also have to realize you’ve never taken the medication, so having support from someone else who’s actually taken it is really important,” says Flygare. Project Sleep has a toolkit and podcast on upcoming treatments to help people with narcolepsy understand their options.
Connecting patients with support groups and advocacy groups is an underutilized practice for time-constrained clinicians, but it’s a way to show patients that they’re not alone, says Lavender. “We as a community have to do better with knowing what’s out there, getting the word out, and being informed,” she says.
References
1. Turner M. The treatment of narcolepsy with amphetamine-based stimulant medications: A call for better understanding. J Clin Sleep Med. 2019 May 15;15(5):803-5.
2. Lavender M, Merius H, Schneider B, et al. 0840 Oxybate awareness, usage, and experience among people with narcolepsy: A MyNarcolepsyTeam survey analysis. Sleep. 2025 May;48(suppl 1):A364.
3. Krahn L, Roy A, Winkelman JW, et al. Assessing early efficacy after initiation of once-nightly sodium oxybate (ON-SXB; FT218) in participants with narcolepsy Type 1 or 2: A post hoc analysis from the phase 3 REST-ON trial. CNS Drugs. 2025;39(suppl 1):53-9.
4. Flygare J, Oglesby L, Parthasarathy S, et al. Social support and isolation in narcolepsy and idiopathic hypersomnia: An international survey. Sleep Med. 2025 Jan;125:65-73.
