narcolepsy patient journey

Patients' journeys to a narcolepsy diagnosis: a physician survey and retrospective chart review

Affiliation.

• 1 Jazz Pharmaceuticals, Inc., Palo Alto, CA. [email protected].
• PMID: 24918805
• DOI: 10.3810/pgm.2014.05.2769

Narcolepsy is a lifelong disorder with potentially debilitating symptoms. Obtaining an accurate diagnosis often requires multiple tests and physician visits. This report describes results from an online, quantitative, company-sponsored survey in which physicians provided information from the charts of their patients with narcolepsy. Neurologists, pulmonologists, psychiatrists, and other specialists who were board certified in sleep medicine; had 2 to 30 years of clinical experience; and treated ≥ 5 narcolepsy patients per month were invited to complete ≤ 6 surveys using charts of patients who were treated for narcolepsy in the last 6 months. Data from 252 patients were collected from 77 physicians. Patients were predominantly male (55%), white (67%), and had a median age of 38 years (range: 12-83 years). Referral to the respondent physician was common, mainly from primary care physicians. The most common initial symptoms were excessive daytime sleepiness (91%), trouble staying awake during the day (44%), and trouble concentrating/functioning during the day (43%). Overall, initial symptoms were of at least moderate severity in 85% of patients. Most patients completed overnight polysomnography (83%), a Multiple Sleep Latency Test (76%), and/or the Epworth Sleepiness Scale (62%). The median time from patient-reported symptom onset to diagnosis was 22 months (range: 0-126 months); at least half saw ≥ 2 providers before being diagnosed; and 60% of patients had previously been misdiagnosed with other disorders, including depression (31%), insomnia (18%), and/or obstructive sleep apnea (13%). In this study, the journey to a narcolepsy diagnosis required evaluation by multiple physicians and took nearly 2 years in 50% of patients, and > 5 years in 18%. These data highlight the need for increased awareness of the signs and symptoms of narcolepsy.

Publication types

• Research Support, Non-U.S. Gov't
• Aged, 80 and over
• Diagnosis, Differential
• HLA Antigens
• Middle Aged
• Narcolepsy / diagnosis*
• Polysomnography
• Referral and Consultation
• Retrospective Studies
• Severity of Illness Index
• Time Factors
• Young Adult

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Living with Narcolepsy: Current Management Strategies, Future Prospects, and Overlooked Real-Life Concerns

Emily c barker.

1 Case Western Reserve University School of Medicine, Department of Pediatrics, Cleveland, OH, USA

Julie Flygare

2 Project Sleep, Los Angeles, CA, USA

Shalini Paruthi

3 Sleep Medicine and Research Center, St. Luke’s Hospital, St. Louis, MO, USA

4 Saint Louis University School of Medicine, Departments of Medicine and Pediatrics, St. Louis, MO, USA

Katherine M Sharkey

5 Department of Medicine, The Warren Alpert Medical School of Brown University, Providence, RI, USA

6 Department of Psychiatry & Human Behavior, The Warren Alpert Medical School of Brown University, Providence, RI, USA

7 Rhode Island Hospital, Providence, RI, USA

Associated Data

• Mayo Clinic Laboratories. Orexin-A/Hypocretin-1 in Spinal Fluid . available from: https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/604230 . Accessed April 2, 2020.
• Driver and Vehicle Licensing Agency. Guidance, Neurological Disorders: assessing Fitness to Drive . Available from: https://www.gov.uk/guidance/neurological-disorders-assessing-fitness-to-drive#primarycentral-hypersomnias–including-narcolepsy . Accessed June20, 2020 2020.
• Narcolepsy Network. Narcolepsy and driving laws . Available from: https://narcolepsynetwork.org/narcolepsydrivinglaws/ . Accessed June20, 2020.
• Clinicaltrials.gov. Once-nightly sodium oxybate for treatment of excessive daytime sleepiness and cataplexy in narcolepsy – NCT02720744 . Available from: https://clinicaltrials.gov/ct2/show/ {"type":"clinical-trial","attrs":{"text":"NCT02720744","term_id":"NCT02720744"}} NCT02720744 . Accessed April3, 2020..
• Wake Up Narcolepsy. Narcolepsy 360 Podcast . Available from: https://www.wakeupnarcolepsy.org/get-involved/podcast/ . Accessed April 3, 2020.
• Narcolepsy Network. Narcolepsy network annual conference . https://narcolepsyconference.org/ . Accessed June20, 2020 Accessed April 3, 2020.
• Office of the Under Secretary of Defense for Personnel and Readiness. Available from: DOD Instruction 6130.03 Medical Standards for Appointment, Enlistment, or Induction into the Military Services .; 2018. https://www.esd.whs.mil/Portals/54/Documents/DD/issuances/dodi/613003p.pdf?ver=2018-05-04-113917-883 . Accessed May26, 2020..
• Project Sleep. Rising voices of narcolepsy . Available from: https://project-sleep.com/rising-voices-of-narcolepsy/ . Accessed April 3, 2020.

Narcolepsy is a neurological disorder of the sleep-wake cycle characterized by excessive daytime sleepiness (EDS), cataplexy, nighttime sleep disturbances, and REM-sleep-related phenomena (sleep paralysis, hallucinations) that intrude into wakefulness. Dysfunction of the hypocretin/orexin system has been implicated as the underlying cause of narcolepsy with cataplexy. In most people with narcolepsy, symptom onset occurs between the ages of 10 and 35 years, but because the disorder is underrecognized and testing is complex, delays in diagnosis and treatment are common. Narcolepsy is treated with a combination of lifestyle modifications and medications that promote wakefulness and suppress cataplexy. Treatments are often effective in improving daytime functioning for individuals with narcolepsy, but side effects and/or lack of efficacy can result in suboptimal management of symptoms and, in many cases, significant residual impairment. Additionally, the psychosocial ramifications of narcolepsy are often neglected. Recently two new pharmacologic treatment options, solriamfetol and pitolisant, have been approved for adults, and the indication for sodium oxybate in narcolepsy has been expanded to include children. In recent years, there has been an uptick in patient-centered research, and promising new diagnostic and therapeutic options are in development. This paper summarizes current and prospective pharmacological therapies for treating both EDS and cataplexy, discusses concerns specific to children and reproductive-age women with narcolepsy, and reviews the negative impact of health-related stigma and efforts to address narcolepsy stigma.

Introduction

Narcolepsy is a chronic neurologic disorder that affects the stability of sleep and wakefulness. 1 All individuals with narcolepsy have excessive daytime sleepiness (EDS), and most experience sleep paralysis, hypnogogic and/or hypnopompic hallucinations, and/or disrupted sleep at night. 2 Cataplexy, a phenomenon of sudden, brief loss of muscle tone during wakefulness, is another defining feature of narcolepsy. 1 Additionally, many people with narcolepsy report difficulties with concentration, cognition, and daytime fatigue. 3

Diagnosis of narcolepsy requires confirmation of EDS with a multiple sleep latency test (MSLT)—defined as an average sleep latency of <8 minutes during 5 sleep opportunities across the day—as well as two or more REM-onset naps. 4 Because of converging evidence that narcolepsy with cataplexy results from dysfunction in the neural hypocretin/orexin pathways that contribute to sleep-wake regulation, 5 low hypocretin-1 levels (≤110 pg/mL) measured in cerebrospinal fluid (CSF) can also be used to diagnose narcolepsy in centers where the test is available. At the time of publication, clinical testing for Orexin-A/Hypocretin-1 in Spinal Fluid is available through Mayo Clinic Laboratories. 6 Narcolepsy is categorized into two types based on clinical presentation and associated underlying biomarkers. Narcolepsy Type 1 (NT1) is defined by the presence of cataplexy and is nearly always associated with low hypocretin levels and/or impaired hypocretin signaling, whereas Narcolepsy Type 2 (NT2) is diagnosed when cataplexy does not occur and hypocretin deficiency/dysfunction is not observed. Partial deficiency of hypocretin can exist in the absence of cataplexy, however, indicating that some cases of NT2 may be caused by less-extensive impairment to hypocretin signaling. 7 Moreover, the scant neuropathology data in NT2 suggest that although hypocretin neuronal dysfunction is implicated in both types of narcolepsy, hypocretin neuron damage is more circumscribed in NT2 than in NT1. 7 NT2 is a challenge to diagnose due to non-specificity of symptoms, limitations of diagnostic tests and absence of useful biomarkers, and much remains to be understood about the pathophysiology of this hypersomnia subtype. 8 Whether NT2 is an entity distinguishable from idiopathic hypersomnia (IH) is also a topic of intense interest, and although this continues to be debated, some differentiating features have been advanced, eg, more disrupted nocturnal sleep and better restorative response to naps in NT2 than IH. 8 , 10

Although the exact causes of narcolepsy are still under investigation, evidence points to an immune process that results in damage and/or dysfunction of the hypocretin-producing neurons in the lateral-posterior hypothalamus as a plausible etiology for NT1. 5 Observations that support immune-mediated NT1 pathophysiology include the association of NT1 development with major histocompatibility complex genes, particularly the HLA-DQB1*06:02 allele, 11 influenza A and streptococcal infections, and the Pandemrix H1N1 vaccine. 12 Other areas of active investigation into the causes of narcolepsy include examination of the histamine system, search for other immune mediators, and studies of “secondary narcolepsy” attributed to hypothalamic injury from traumatic, infectious, or demyelinating processes.

Prevalence estimates indicate that narcolepsy affects between 25 and 50 people per 100,000, 13 with higher rates observed in Japanese 14 and African American 15 cohorts and lower rates in Israel. 16 A 2019 study of an insurance database comprised of >18 million people found a prevalence rate of 79.4 per 100,000 persons and an incidence rate between 4.87 and 7.67 per 100,000 persons per year. 17 Variation in prevalence estimates is attributed to differences in case definition across studies and to differences in genetic susceptibility to narcolepsy among different subgroups. 13 Historically, narcolepsy had been reported to be more common in men than in women, 18 though more recent epidemiologic evidence shows equal prevalence of narcolepsy between genders or higher prevalence in women. 17 , 19 , 20 Women with narcolepsy report earlier symptom onset than men, and fall asleep more quickly on the MSLT. 20 Furthermore, in the Doberman Pinscher canine narcolepsy model, cataplexy was at least twice as severe in females as in males. 21

Diagnostic and Treatment Challenges

Even when the narcolepsy is suspected, diagnosis can be elusive. Short sleep latencies and sleep onset REM periods can be seen in conditions other than narcolepsy, 24 , 25 and although test–retest reliability is high in NT1, more variable MSLT results are observed among individuals with NT2 and idiopathic hypersomnia. 26 A short REM latency (≤15 minutes) during nocturnal polysomnography (NPSG) has high specificity for NT1 and can aid in diagnosis, 27 , 28 though short REM latency on NPSG can also be observed in people with other untreated sleep disorders, night-shift workers, and individuals with insufficient sleep. 29 From a practical standpoint, many individuals with excessive sleepiness take medications that interfere with multiple sleep latency testing, and tapering and withholding these medications in preparation for the MSLT can cause safety concerns and decrements to quality of life. Measurement of a CSF hypocretin-1 level is a definitive test for NT1, 30 but challenges remain, such as access and acceptability among individuals with possible narcolepsy. Innovative testing methods using neuroimaging techniques such as positron emission tomography (PET), single-photon emission computed tomography (SPECT), functional magnetic resonance imaging (fMRI), and magnetic resonance spectroscopy (MRS) are being investigated as possible tools for improving diagnosis of narcolepsy. 31

People with narcolepsy have a higher incidence of certain comorbid conditions, including obesity, depression, anxiety, and other sleep disorders. For instance, a community-based study that compared 68 individuals with narcolepsy to age- and sex-matched controls at diagnosis and after an average follow-up period of 9.9 years found higher rates of obesity, psychiatric conditions, obstructive sleep apnea, endocrine disorders, and low back pain among those with narcolepsy. 19 A larger study of insurance-coding data that included 9312 people with narcolepsy, found excess rates of anxiety disorders, diabetes, headaches, depression, obesity, periodic limb movement disorder, obstructive sleep apnea, REM behavior disorder, and restless legs syndrome. 32 Won et al 20 examined gender differences in comorbid conditions among people with narcolepsy and found that men were significantly more likely to have a diagnosis of attention-deficit-hyperactivity disorder (ADHD), whereas women were more likely to be diagnosed with a neurologic or autoimmune disorder.

A limited number of studies have examined the relationship between age and the core symptoms of narcolepsy. Findings suggest that symptoms are dynamic over time and that EDS, cataplexy, and night-time sleep quality may improve with age. 33 , 36 Age-related increase in MSLT sleep latency and decrease in sleep onset REM periods (SOREMPs) have been observed in NT1. 34 Cataplexy has been observed to be significantly less frequent in individuals with NT1 age 65 or older, compared to those younger than 65 years. 33 Additionally, a 10-year longitudinal study reported improvement and even resolution of cataplexy, along with improved ESS and night-time sleep quality in a large proportion of individuals with NT1. 36 Another longitudinal study found that in a majority of individuals with NT1, EDS changed little over the 5 years of observation; nevertheless, spontaneous improvement in EDS was observed in 15% of the cohort, and was tied to milder hypocretin deficiency and more consolidated night-time sleep. 35 These studies challenge prior assumptions that narcolepsy symptoms are stable and unremitting over time.

Individuals with narcolepsy have higher rates of accidental injury than matched controls, including burns, 37 bone fractures 38 and automobile crashes. 39 In a study that compared car crashes between 282 individuals with NT1, NT2, or idiopathic hypersomnia (IH) and 470 controls, 22.7% of people with a hypersomnolence condition reported an auto accident in the previous 5 years compared with 14% of controls. 39 Crashes were predicted by higher levels of subjective sleepiness, use of caffeinated energy drinks, and reports of daytime napping. Interestingly, those with narcolepsy or IH who had been treated for 5 years or more did not have higher rates of automobile accidents than controls. In the European Union, national restrictions regulate that fitness to drive is assessed prior to issuance or renewal of driving licenses for individuals with certain sleep disorders, including NT1 and NT2. 40 In the US, most state motor vehicle bureaus expect driving license applicants to self-report conditions that may compromise fitness to drive, but do not make reporting of medical conditions mandatory and may or may not require further documentation if a condition is self-reported. Only a handful of states require mandatory reporting of a medical condition, including narcolepsy, that may impair driving, as well as documented assessment of fitness to drive. 41

Treatment Landscape for Narcolepsy

In 2013, the FDA hosted a patient-focused drug development initiative (PFDDI) for narcolepsy to gather perspectives from individuals living with this condition. Some of the reported therapeutic challenges for the narcolepsy community included variable responsiveness and limited access to available treatment options, as well as intolerable drug side effects. 42 The Maski et al 43 report of the Unite Narcolepsy survey, administered in conjunction with the PFDDI meeting, indicated that 57.1% of people with narcolepsy experienced daytime sleepiness or fatigue three or more times per day in spite of treatment while only 3.9% reported no daytime sleepiness in response to treatment. The lack of perceived efficacy, as well as side effects, drug interactions, and high costs, likely contribute to inconsistent medication use. A study of 116 people with narcolepsy found that while 55.2% of study participants took their medications at least 80% of the time, 12.9% took their medications only 50–80% of the time and 31.9% took their prescribed medications less than 50% of the time. 44

It is striking that until recently, only 5 medications had been indicated for the treatment of narcolepsy in the US, reflecting an ongoing need for increased treatment options to combat EDS and cataplexy in narcolepsy. Increased understanding of narcolepsy pathophysiology is enabling exploration of other candidate molecules and in 2019 two new compounds, pitolisant and solriamfetol, were approved in the US for treatment of excessive daytime sleepiness in narcolepsy. Alternative formulations of current treatments aim to increase convenience and adherence to regimens and extended indications are expanding options for the pediatric population. Additionally, prospective treatments, such as orexin agonists, are showing promise in clinical trials and may soon find their way into the armamentarium of treatment options. Non-pharmacological therapies are likely to be effective adjunctive treatment for narcolepsy.

Historic and Current Pharmacologic Treatments

Historically, stimulants, antidepressants and hypnosedatives have been used to treat EDS and cataplexy associated with narcolepsy. The first compound to demonstrate significant improvement for excessive sleepiness in narcolepsy was amphetamine in 1935 and it is still prescribed today and indicated for that purpose. 45 , 46 Methylphenidate has been used to treat EDS in narcolepsy since the 1950s and is considered to have a more favorable safety profile than amphetamine. Methylphenidate and amphetamine are recommended as second- and third-line therapeutics for EDS. They are mechanistically similar, promoting wakefulness by increasing presynaptic dopamine release. 45

Tricyclic antidepressants (TCAs), including imipramine, clomipramine, desipramine and protriptyline were reported to improve cataplexy symptoms as early as 1960. They are included as suggested treatments for cataplexy by the American Academy of Sleep Medicine (AASM) and European Federation of Neurological Societies, although rigorous randomized, placebo-controlled clinical trials have not been performed. 46 , 47 Intolerable side effects with TCAs are common, as well as rebound cataplexy upon withdrawal. 45 Although no antidepressants are FDA-approved for the treatment of cataplexy, classes other than TCAs have shown efficacy in reducing cataplexy, and are often better tolerated. Venlafaxine, a selective serotonin and norepinephrine reuptake inhibitor (SNRI), is a first-line recommended therapeutic for cataplexy and shows fewer side effects but has similar withdrawal concerns as TCAs. Fluoxetine, a selective serotonin reuptake inhibitor (SSRI), and selegiline, a monoamine oxidase type B inhibitor, are also common antidepressant-class recommended treatments for cataplexy. 45 , 47

Currently, sodium oxybate, the sodium salt of gamma hydroxybutyrate, is the only medication indicated for both EDS and cataplexy. It is recommended as the first-line therapy for both of these indications, based upon rigorous randomized, placebo-controlled clinical trials, and its indication was recently expanded to include treatment of children (≥7 years of age) with narcolepsy after a placebo-controlled, double-blind, randomized clinical trial demonstrated the efficacy, safety, and tolerability of sodium oxybate in children and adolescents with narcolepsy. 48 For individuals who cannot take sodium oxybate, first-line recommended wake-promoting agents are modafinil and armodafinil, in part because their potential for abuse and dependency are lower than amphetamine. Modafinil has been shown to control EDS in narcolepsy at a comparable level to sodium oxybate, but is ineffective in reducing cataplexy, compared to placebo. 49

New and Prospective Pharmacologic Treatments

Solriamfetol.

Solriamfetol, a derivative of phenylalanine, is a dopamine and norepinephrine reuptake inhibitor recently approved in the US for the treatment of EDS in adults with narcolepsy or obstructive sleep apnea. In Phase 2 and 3 clinical trials, solrimfetol was shown to significantly improve wakefulness and reduce sleepiness in these patient populations compared to placebo as shown by Maintenance of Wakefulness Test (MWT) sleep latency and by Epworth Sleepiness Scale (ESS) scores. 50 , 53 Solriamfetol inhibits reuptake of the monoamines via interaction at both the dopamine transporter and the norepinephrine transporter and thus by a mechanism distinct from that of the wake-promoting agent modafinil, which is thought to bind primarily at the dopamine transporter to inhibit dopamine reuptake. 54 Solriamfetol also differs mechanistically from the amphetamines as it does not promote the release of norepinephrine. 51 , 55 , 56 These distinctions may account for differences in therapeutic effects between solriamfetol and other wake-promoting drugs. 56 , 57 Unlike modafinil, armodafinil and pitolisant (see below), solriamfetol does not interfere with the efficacy of oral contraceptive pills, 58 potentially offering a more convenient option of non-amphetamine wake-promoting agent to women with narcolepsy passing through their child-bearing years. Solriamfetol treatment also shows no evidence of drug-induced rash, a potential side effect of the wake-promoting agents modafinil and armodafinil. 59

Pitolisant is an antagonist/inverse agonist of the histamine H 3 receptor that was approved for the treatment of narcolepsy with or without cataplexy in the European Union in 2016 60 and in the US for the treatment of EDS in adults in August 2019. 58 The histaminergic system in the central nervous system modulates processes including wakefulness, feeding, and learning and memory consolidation via histamine receptors, H 1 , H 2 , H 3 and H 4 . 61 Blocking histamine synthesis, or histamine receptor H 1 , has been shown to increase cortical slow waves and enhance sleep. Conversely, enhancing the neurotransmission of histamine has been shown to promote wakefulness. The histamine H 3 receptor controls the release, synthesis and turnover of histamine and the neuronal activity of histaminergic cells. 62 Thus, pitolisant acts to promote wakefulness by blocking H 3 receptors, which, in turn, increases synaptic histamine release via H 1 receptors. 63

Randomized and open-label clinical trials have demonstrated efficacy of pitolisant in decreasing ESS scores and increasing MWT scores compared to placebo in people with narcolepsy with or without cataplexy, as well as in decreasing severity of cataplexy compared to placebo in people with NT1. 64 , 66 These studies also demonstrated that pitolisant is noninferior to modafinil in reducing EDS in people with narcolepsy with or without cataplexy.

Alternative Sodium Oxybate Formulations

Multiple investigations are underway to identify alternative formulations of sodium oxybate to increase the options with this standard therapy for both EDS and cataplexy. 47 , 58 To address the twice-nightly dosing of sodium oxybate, which some individuals find difficult to time correctly or to be an inconvenience, a once-nightly dosing regimen of an extended-release sodium oxybate formulation that uses micropump technology (FT218) is being tested for safety and efficacy. FT218 recently completed Phase III clinical development for treatment of EDS associated with narcolepsy and cataplexy, evaluating safety and efficacy of daily doses of 4.5, 6.0, 7.5 and 9.0 g sodium oxybate compared to placebo. Outcomes include MWT sleep latency, Clinical Global Impression of Change (CGI-C) and mean number of cataplexy attacks. If approved, FT-218 will be the first once-nightly treatment to address both EDS and cataplexy in narcolepsy. 67

A low-sodium alternative to sodium oxybate, JPZ-258, is a recently developed mixed salts oxybate oral solution. Sodium load for the maximum therapeutic dose of sodium oxybate (9.0 g) is equivalent to 1640 mg sodium intake, 68 71% of the 2300 mg maximum recommended sodium intake by the American Heart Association, and exceeding the 1500 mg recommended for individuals with conditions associated with sodium sensitivities. 69 The new formulation, JPZ-258, would reduce sodium intake by up to 92% and may thus present a safer alternative for people with narcolepsy who also have heart failure, hypertension or renal impairment or for those carrying risk factors for such conditions. Recently completed Phase 3 clinical trials evaluated safety and efficacy in people with narcolepsy with cataplexy and demonstrated significant differences in weekly number of cataplexy attacks as well as improved ESS scores compared to placebo. 70 , 71 The US Food and Drug Administration accepted a New Drug Application for JZP-258 for the treatment of cataplexy and EDS in people with narcolepsy ages 7 years and older in March 2020 and it is anticipated it will be commercially available in 2020.

Hypocretin/Orexin-Based Therapies

Because the pathophysiology of narcolepsy involves deficiency of the neuropeptide hypocretin-1, 72 multiple modes of hypocretin ligand-replacement strategies have been pursued as potential therapies for narcolepsy. 47 Penetration of the blood-brain barrier has proven the greatest challenge in hypocretin-replacement therapy. Considering significant barriers to hypocretin-replacement approaches, non-peptide small molecule hypocretin receptor agonists represent another avenue for targeting hypocretin deficiency in narcolepsy. TAK-925 is a hypocretin/orexin 2 receptor-selective agonist that is under development and has been shown to promote wakefulness in mice. 73 Phase 1 studies indicate that intravenous TAK-925 is well tolerated in people with narcolepsy type 1 and increases wakefulness compared to placebo as measured by MWT and Karolinska Sleepiness Scale. 74 , 75 An oral hypocretin/orexin 2 receptor-selective agonist TAK-994 has also shown increased wakefulness and decreased cataplexy in mouse models and is progressing in phase 1 and phase 2 clinical trials. 76 , 78 These strides suggest a promising future for hypocretin/orexin receptor agonism in the treatment of narcolepsy with cataplexy.

AXS-12 (Reboxetine)

Reboxetine is a selective norepinephrine reuptake inhibitor approved for treatment of depression in 40 countries outside of the U.S. 58 A formulation of reboxetine, AXS-12, is under development for the treatment of EDS and cataplexy in narcolepsy. AXS-12 has demonstrated efficacy in reducing sleep and cataplexy in mice 79 and decreasing EDS and cataplexy in a pilot study in individuals with narcolepsy. 80 A recently completed phase 2 randomized, double-blind, placebo-controlled, crossover trial in individuals with narcolepsy and cataplexy compared AXS-12 with placebo and measured EDS, cataplexy, cognitive function, and sleep quality. 81 Phase 3 trials are planned, and if AXS-12 proves efficacious in the treatment of both EDS and cataplexy, it may be an alternative for individuals who do not tolerate or respond to other regimens. AXS-12 may also be useful to individuals with NT1 and comorbid depression. 58

Non-Pharmacologic Treatments: Lifestyle Changes and Psychological Therapies

Lifestyle changes for treating narcolepsy symptoms are prescribed routinely to complement pharmacologic treatments. These most often include implementing scheduled naps and maintaining a regular sleep routine. 82 Many studies demonstrate the positive impact of naps on alertness in people with narcolepsy. 83 Other lifestyle alterations may be recommended including modifying work schedules based on individual needs, avoiding sleep-inducing situations and identifying sources of psychosocial support. 83 , 84 A study of 42 people with narcolepsy (NT1: n=32, NT2: n=10) showed decreased cardiopulmonary fitness compared to age- and sex-matched controls and higher levels of sleepiness and more frequent cataplexy episodes were associated with lower levels of exercise tolerance. 85 Although causality cannot be determined from this cross-sectional study, these finding raise the question of whether regular exercise may help improve narcolepsy symptoms in patients who are able to safely implement an exercise routine.

Narcolepsy symptoms have been shown to have significant impact on not only the physical but also the mental and social health of persons with narcolepsy. 86 , 88 Thus, counseling and psychological therapies have also been suggested as potential treatment approaches to address both the symptoms of narcolepsy, as well as the associated psychological impact that can accompany the diagnosis. 83 , 84 , 89 Although there is a shortage of controlled studies examining the benefits of non-pharmacological and lifestyle adjustments to treat narcolepsy, reports indicate that a large proportion of individuals rely on alternative treatment modalities to supplement medication. 83 Medication alone is often insufficient for alleviating narcolepsy symptoms and psychological and lifestyle approaches should be considered more broadly and tested rigorously. 42

Challenges and Prospects for Specific Populations with Narcolepsy

Children and adolescents with narcolepsy.

Narcolepsy may be diagnosed in children as young as 5 or 6 years of age, with a peak incidence around 15 years of age. 90 Most children with narcolepsy are brought to their physicians’ attention because of their excessive daytime sleepiness, similar to adults. 91 Some children may restart taking naps after having given them up. The naps may not be refreshing, which may differ from adults, who often characterize their naps as refreshing. Some older children are able to realize they have cataplexy or muscle weakness with strong emotions, whereas others only realize what has been happening when discussing this with their physician. Parents may note the muscle weakness, yet not realize it to be cataplexy, such as when a child’s head and tongue protrudes or thrusts forward while laughing which may also include ptosis (occulobuccofacial weakness), or may wonder why their child keeps falling to the floor when laughing. 92 Children are sometimes so frightened by the hypnagogic and hypnopompic hallucinations that they may not volunteer that information unless specifically asked. Similarly, sleep paralysis can be difficult to verbalize for children. Sleep logs and video recordings showing cataplexy are helpful if the child and parent have difficulty articulating the pentad signs of narcolepsy.

Diagnosis is by the same “adult” criteria with in-lab polysomnography and multiple sleep latency testing, using the same cut-offs for the mean sleep latency of </=8 minutes and 2 sleep-onset REM periods (or sleep onset REM latency of </=15 minutes on overnight polysomnography) as described in detail earlier. Hypocretin levels can also be measured in children.

Treatment is also similar to adults with age-specific considerations. 93 Lifestyle treatment is as important as medication. Children are advised to continue to maintain a good sleep-wake routine (consistent bedtimes and wake times) and live an active lifestyle, full of the usual extracurricular activities. Sports activities keep the child moving and improve alertness and energy levels. Parents are counseled to be especially vigilant regarding safety while using playground equipment, swimming, cooking, or any other activities during which if cataplexy occurred, the child could sustain significant harm. It is recommended that children with narcolepsy are always supervised during these types of ‘potentially dangerous’ activities. For teens who are old enough to drive, the young drivers are educated on the importance of first assessing if they are alert enough, driving only when necessary, driving short distances if possible, and driving in the right lane in case they need to pull over abruptly.

Parents are educated on the importance of healthy eating as some children may have substantial weight gain at the onset of their narcolepsy. Additionally, parents are instructed to look for signs of precocious puberty, which is associated with narcolepsy, and may need to be evaluated by an endocrinologist. 94

Children and teens with narcolepsy are at higher risk for depression, social and emotional distress, aggressive behavior, and difficulty with focus and attention resulting in poor school performance. 87 , 95 , 96 Treatment can substantially improve quality of life.

Most teachers are able to make accommodations for children to have one or more brief scheduled naps within the school day if needed, and otherwise, it is advised that children take a brief nap after school. Job counseling is also provided to teens with narcolepsy (with or without cataplexy) to avoid professions that require quiet, sedentary work, night-shift work, a commercial driver’s license, or other jobs including but not limited to pilot, military personnel, security personnel. Additionally, for teens with cataplexy, counseling is provided to avoid jobs that include heavy machinery or heights.

Despite lifestyle changes, medications are almost always necessary to help children with narcolepsy stay awake and alert during the day. Parents may be hesitant to start medications; however, it is of paramount importance for the child to be alert, focused and able to keep up with their schoolwork. At the time of publication, there are no evidence-based guidelines or consensus guidelines for treatment of narcolepsy in children. Therapy is individualized for each child’s symptoms. Typically, stimulants are first-line medications, followed by wake-promoting agents, including modafinil or armodafinil, and lastly, sodium oxybate. Cataplexy may be treated with sodium oxybate and antidepressant medications in the SSRI or SNRI classes. Sodium oxybate is now approved to treat EDS and cataplexy in children and adolescents age 7 years and older, 48 the wake-promoting medications modafinil and armodafinil are approved for children 17 years of age and older, and pitolisant is being tested in pediatric populations. 97 It is also important to discuss with older teens to avoid alcohol, which can worsen sleep quality and also possibly interact with medications.

Individuals of Childbearing Potential

The limited amount of information regarding narcolepsy during pregnancy and lactation and potential effects of common narcolepsy medications on the human fetus and neonate present challenges both to women with narcolepsy when facing decisions concerning family planning as well as to physicians treating this population of narcolepsy patients. A survey-based study evaluating narcolepsy specialists around the world indicated that most physicians stopped medications at the time of conception, during pregnancy and during breastfeeding. 98 This report suggested that based on the available literature, perceived risks of narcolepsy medications might be overestimated, 98 however current studies indicate the potential of teratogenicity of certain therapies and treatment of narcolepsy during pregnancy should consider all potential risks and benefits and should include informed collaboration between patient, sleep doctor and obstetrician. 99 , 100 Challenges for women with narcolepsy who choose to go without medication during pregnancy and lactation are likely to include compromised safety to both mother and fetus/infant as well as increased work absences and potential for unemployment for working women due to poor symptom control. 101 Simply anticipating these challenges could make embarking on family life a difficult consideration for young adult women with narcolepsy and may, in part, explain the increased age at first pregnancy for NT1 women and increased likelihood for single-pregnancy discovered in recent retrospective cohort and case–control studies. 102 , 103

A recent finding of particular relevance to this population of people with narcolepsy is the demonstration of emission of sodium oxybate, first-line therapy for NT1, in the milk of lactating women taking sodium oxybate. 104 , 105 Our study in 2 women with NT1 representing 3 pregnancies, and a case report in a woman with NT1 indicated the possibility of avoiding infant exposure to elevated levels of gamma-hydroxybutyric acid (GHB) by delaying feeding expressed milk until exogenous GHB can be presumed to be absent from the milk. Larger, confirmatory studies should be undertaken; however, this information should be considered when evaluating therapeutic options for NT1 women who elect to breastfeed and respond well to sodium oxybate therapy. This option may be less feasible for women who have limited support for night-time infant care and feedings. It is significant that in the retrospective cohort study by Maurovich-Horvat et al, 102 60.1% of women who developed narcolepsy before or during pregnancy reported neonatal care to be adversely affected by narcolepsy symptoms. Reported struggles in the puerperium included excessive sleepiness, sleep attacks during feeding or nursing, fear of being impaired by symptoms, and cataplexy while holding the baby. Improved options for safely treating postpartum NT1 women with sodium oxybate might help to eschew these dangers.

Considering the burden the above challenges could pose for the duration of pregnancy and breastfeeding in childbearing women with narcolepsy, it is requisite that this population be presented with a comprehensive understanding of their options, and sufficient guidance from their physician throughout the family planning process.

Studies examining the impact of narcolepsy on intimate relationships and sexuality are limited, but shed light on unique challenges to which practitioners should demonstrate sensitivity. Women and men with narcolepsy have reported forms of sexual dysfunction, including cataplexy with orgasm (termed orgasmolepsy) and erectile dysfunction with narcolepsy treatment, suggesting that individuals with narcolepsy may experience distinct challenges associated with sexual intimacy. 106 , 109 Orgasmolepsy episodes have been described as involving complete loss of muscle tone, but not lasting more than 30 seconds. Case studies indicate that cataplexy treatments may be effective in reducing orgasmolepsy for some patients, but rigorous studies in this area have not been pursued. 107 A further consideration, which receives little mention in the literature, is the potential impact of other symptoms of narcolepsy and narcolepsy treatments on intimate relationships and sexuality. 110 Excessive sleepiness, strict sleep regimens and sedating properties or sexual dysfunction side effects of narcolepsy therapies are only a few of the aspects of disease presentation and management that could pose challenges to sexual intimacy and intimate partner relationships. Future research in this area could aid to increase sleep specialist-awareness of some under-addressed psychosocial challenges in narcolepsy.

Acknowledging and Addressing Narcolepsy Stigma

Public understanding of narcolepsy is limited and often inaccurate, with entertainment and media portrayals associating narcolepsy with humorously falling asleep rather than with a serious health condition requiring medical attention. 111 As a result, people with narcolepsy face significant delays in proper detection and diagnosis. 22 Misperceptions of narcolepsy also perpetuate stigma and being labeled by teachers, co-workers, supervisors, and others as antisocial, lazy, careless, or faking. 42

Significant prior research over the past 38 years and across various cultures well established that narcolepsy significantly impacts health-related quality of life (HRQOL) and psychosocial wellbeing, e.g. 88 , 112 , 119 People with narcolepsy report feeling socially isolated (even within their own families), inferior to others, and hesitant to disclose their disorder to others, fearing the consequences and reaction they would receive. 112 Despite these descriptions of diminished quality-of-life, health-related stigma was not studied as a potential underlying mechanism impacting people with narcolepsy until 2015. 120 Defined as a social process, experienced or anticipated, characterized by exclusion, rejection, blame or devaluation that results from experience, perception or reasonable anticipation of an adverse social judgment about a person or a group, 121 health-related stigma has been reported in a number of chronic conditions, and is a potential predictor of lower HRQOL. Kapella et al (2015) found that young adults with narcolepsy reported feeling significantly more stigma than those without narcolepsy in all domains, including social rejection, financial insecurity, internalized shame, and social isolation and that the levels of health-related stigma observed in this sample were comparable to those found in people living with HIV. 120 These high levels of health-related stigma are significant, especially with growing evidence that stigma contributes to economic disparities and difficulties with social relationships, and can affect access to and the quality of health care as well as adherence to a medication regimen. 122 In addition to high levels of perceived stigma, people with narcolepsy reported lower levels of quality of life, especially in physical, vitality and social functioning roles, and greater anxiety and depression than young adults in the comparison group. The major factors impacting social functioning were depression, sleepiness, and social rejection. Conversely, less depression, sleepiness and perceived social isolation predicted significantly better social functioning. Further, the authors proposed that health-related stigma likely affects social functioning both directly and indirectly through depressed mood.

Addressing Stigma at an Individual Level

Further research is needed to examine other levels of stigma (societal, organizational, and individual perspectives) and across a broader age range. From this, evidence-based strategies could be developed for predicting vulnerable individuals and implementing effective strategies to mitigate the deleterious impacts of stigma. Health-related stigma interventions in other chronic illness communities suggest benefits from using educational programs, skill-building, cognitive behavioral therapy and support groups.

Kapella et al ground-breaking first study on narcolepsy and stigma highlights that living with this condition is a multifaceted experience involving a complex web of social dynamics that extends beyond managing the basic symptoms of narcolepsy. 120 Thus, treating the full scope of narcolepsy’s impact requires a multidisciplinary care approach including pharmacologic treatments, scheduled naps, lifestyle changes (such as diet, exercise, and sleep hygiene) and social support (such as counseling, support groups, conferences, and educational and skill-building programs).

Connecting people with narcolepsy and their loved ones to patient advocacy organizations is another key way to support the social experiences of those living with narcolepsy. Patient advocacy organizations offer a variety of resources, events, support services and educational programming that can help to foster connection and reduce stigma. For example, sharing one’s illness story with others is a powerful method of creating reflection and connection, and finding meaning and understanding. 123 Particularly for “invisible illnesses” like narcolepsy, having one’s voice heard can be an incredibly validating experience. 124 Thus, there is great value in programs like Wake Up Narcolepsy’s Narcolepsy 360 Podcast 125 and Narcolepsy Network’s Annual Conference. 126 In addition to formal in-person and video support groups run through these organizations, there are additional formal and informal online support groups via platforms like Facebook and Patients Like Me.

Addressing Stigma at a Societal Level

During the FDA’s narcolepsy meeting in 2013, people with narcolepsy and their loved ones consistently expressed the need for more to be done to help narcolepsy gain acceptance and understanding in schools, workplaces, and other social and professional settings. 42 Thus, efforts aiming to raise accurate awareness and debunk societal misperceptions of narcolepsy will help to reduce stigma and reduce unnecessary delays to diagnosis.

Better public education may also reduce the restrictions that people with narcolepsy face in professional and educational settings. For example, a diagnosis of narcolepsy is listed as a disqualifying condition for serving in the US military and those with narcolepsy must apply for a medical waiver to enlist or continue to serve. 127 Furthermore, sleep disorders, including narcolepsy, are associated with more auto accidents and medical errors in healthcare workers. 128 In the United States, legal protections under the Americans with Disabilities Act of 1990 (ADA) can help people with narcolepsy to receive educational and employment accommodations. Determining whether a particular person with narcolepsy qualifies for educational or employment accommodations should be an individualized process that takes into consideration the person’s particular circumstances. Likewise, while educational and employment accommodations both involve the ADA and use some overlapping terminology – different factors, processes and protections are in play in these two areas. Learning about the legal protections empowers people with narcolepsy and their doctors and caregivers to help those with narcolepsy to obtain appropriate accommodations and succeed at school and in the workplace.

Research indicates that audiences are more likely to engage with and retain information when it is delivered by someone with lived experience, giving a “face” to medical terminology and statistics. 129 For example, In Our Own Voices (IOOV) is a public education program developed by the National Alliance on Mental Illness (NAMI) that trains individuals living with mental illness to deliver public presentations of their personal stories of illness and recovery. Studies have found that presentations by IOOV trainees are effective in increasing knowledge and correcting misperceptions among the general public, college students, and healthcare professionals alike. 130 , 132

Following these best practices, Project Sleep created the Rising Voices of Narcolepsy program 133 in 2017 to train people with narcolepsy to share their story effectively via speaking or writing. In just three years, the program has trained over 60 speakers and writers around the world. This program aims to empower advocates while also raising awareness, reducing stigma and reducing delays to diagnosis. Other patient advocacy organizations in the US include:

Hypersomnia Foundation:

https://www.hypersomniafoundation.org/

Narcolepsy Network:

https://narcolepsynetwork.org/

Project Sleep:

https://project-sleep.com

Wake Up Narcolepsy:

https://www.wakeupnarcolepsy.org/

Although narcolepsy is not a prevalent condition, it is one of the most common causes of excessive daytime sleepiness. 2 Nevertheless, it is under-recognized by the general public and medical providers and people with narcolepsy often experience protracted delays in diagnosis. Testing for narcolepsy has relied on behavioral testing and clinical history but advances in biomarkers such as CSF hypocretin-1 levels and neuroimaging may make narcolepsy easier to diagnose and shed light on pathophysiologic differences between NT1 and NT2. Until recently, few pharmacologic treatment options were available, and most medications used to treat narcolepsy were not developed for this disorder and had not undergone vigorous testing in this population. New pharmaceuticals that are now available and those in development provide novel options to treat EDS and cataplexy. In the last decade, the experiences of people with narcolepsy are playing a more prominent role in management of this condition. Innovations in pharmacologic therapies, lifestyle modifications and behavioral strategies, and personalized care for specific populations are changing the outlook for management of narcolepsy. Finally, the acknowledgement of health-related stigma associated with narcolepsy and efforts to reduce the impact of this bias are allowing individuals with narcolepsy to enjoy a better quality of life.

Dr. Emily C. Barker is a medical writer and has worked as an independent contractor generating reports and summaries for medical advisory board meetings and round-table discussions for Jazz Pharmaceuticals and has also received speaker honoraria from Jazz Pharmaceuticals. Julie Flygare, JD is employed as the President & CEO of Project Sleep, a 501(c)(3) non-profit organization dedicated to raising awareness about sleep health and sleep disorders. As a patient-perspective expert, Ms. Flygare has consulted on patient-centricity and health communications best practices with drug developers including Harmony Biosciences, Jazz Pharmaceuticals, Avadel Pharmaceuticals and Takeda Pharmaceuticals. She also receives royalties from sales of her book, Wide Awake & Dreaming: A Memoir of Narcolepsy. Dr. Shalini Paruthi is a clinical educator and sleep medicine physician, with focus in pediatrics. She gives professional lectures and receives honoraria from conference organizers and royalties from UpToDate. Dr. Paruthi is an uncompensated member of the Board of Directors of the Restless Legs Syndrome Foundation. Dr. Katherine M. Sharkey is a sleep medicine physician; she recently participated in an early-access patient program for pitolisant sponsored by Harmony Biosciences. As an academic physician, she gives professional talks and receives honoraria from conference organizers and royalties from UpToDate. Her research is funded through grant support from NIH and the Hassenfeld Institute. Dr. Sharkey is an uncompensated founding member of TIMES UP Healthcare. The authors report no other conflicts of interest in this work.

Narcolepsy 360 Podcast 

Every person diagnosed with Narcolepsy embarks on a unique journey. There is no standard path, and for many, this proves to be among the most challenging aspects of the disorder.

The Narcolepsy 360 podcast is a series of interviews that take a panoramic view of Narcolepsy from the patient, care-giver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From latest research to life-style tips, our podcasts shed light on the less discussed issues around Narcolepsy.

Latest Episode

Listen on Apple Podcast |  Spotify  | Stitcher  | Overcast | Google Podcast | Or right here!

Tatiana Maria Corbitt is a writer, artist and advocate. Tatiana is also a person with Narcolepsy Type 1.

In this episode, Tatiana and Claire discuss how the onset of her symptoms occurred after having the flu, while in the first year of college. She was diagnosed in 2017 while studying Applied Biological Studies. Since she experienced such a drastic shift while in the midst of her college career, Tatiana had challenges navigating her studies, managing her symptoms, receiving appropriate accommodations and maintaining her mental health.

Initially, Tatiana’s family was supportive throughout her diagnosis process, but coming to terms that there wasn’t a cure for Narcolepsy has caused a strain within the familial relationships. Their hope for her to become a doctor was thwarted when Tatiana couldn’t find a university with the appropriate disability resource office available that would advocate for her in her studies.

Tatiana currently writes for Health Union about living with Narcolepsy.  Tatiana shares with Claire her current medication and the value of having a service dog. Her service dog, Kida, assists her in so many different facets which helps Tatiana feel safe while managing symptoms. 

Because Tatiana’s Narcolepsy caused such a drastic change in her quality of life, she has had to navigate changes in friendship and familial relationships. Thankfully, she has found community in the Wake Up Narcolepsy Online Support Groups. She recently became a facilitator for a WUN Support Group – LGBTQIA Support Group.

You can follow Tatiana on @saltytatertats on Instagram. Her art Instagram is @studioslumber . You can check out her writings about living with Narcolepsy here . 

Tatiana says, “I recommend the Wake Up Narcolepsy Narcolepsy LGBTQIA+ Support Group that I lead on Fridays. They also have other support groups for people with Narcolepsy that I’ve participated in and highly recommend, especially for people that are newly diagnosed or who don’t have support systems at home.” 

About This Episode

Thomas Gow is a Client Experience Analyst at TruDataRx. Thomas is also a person with Narcolepsy Type 1 and one of the inspirations to the creation of Wake Up Narcolepsy.

In this episode, Thomas shares his experience of diagnosis at the age of 10 and how it wasn’t until he began to experience cataplexy that something bigger was going on beyond just being sleepy.

He shares how he navigated his educational journey from middle school to grad school, playing sports and now working a full-time job. In his acceptance of Narcolepsy, he took logical risks to see how his body could handle different life experiences. Routines, goals, support systems and logical risks have all played a part in helping him embrace his Narcolepsy. 

He believes Narcolepsy has allowed him to grow in a way that gives him a completely different perspective on the world. He says, “[Narcolepsy] is along the ride to where you want to go in life.” It isn’t driving you. 

You can follow Thomas @tgow14 on Instagram and on Facebook.

Tove Maren Stakkestad is a Danish American Writer and Blogger. She is currently sharing her experience of being a mom of 4 boys on her blog Mama In The Now. Tove is also a person with Narcolepsy Type 1.

In this episode, Tove reflects that she believes both her father and grandfather had Narcolepsy and she had a sleepy childhood. When her mother took her to the doctors they thought it was childhood epilepsy and didn’t require further treatment. When she started falling asleep during client meetings, she sought out a doctor’s insight about her sleepiness. It was then she was diagnosed with Narcolepsy Type 1.

As her fourth child was on the way, Tove’s husband suggested that she start a blog as a means to creating an income and assist her in the ability to stay home and raise her kids. She writes about motherhood with honesty and humor. 

Tove is currently unmedicated and lives a lifestyle she calls unapologetic self-care. There is so much to learn through Tove’s blog but Claire asks specifically about a post where Tove describes how Narcolepsy has made her a better parent.  

You can follow Tove @mamainthenow on Instagram, Facebook, Twitter and Pinterest. You can also check out her blog Mama In the Now here .

Tove recommends joining The Facebook Group: Real Moms in the Now – A fun group for mothers from all stages of motherhood. Also, The Hygge Movement – This is a cozy drama-free group of women who embrace the Danish lifestyle of “hygge” (mindfulness and coziness). We share book recommendations, arts and crafts – just all the things that make you feel warm and fuzzy inside.

Desiree Gorbea-Finalet is a person with Narcolepsy Type 1 and a student of Peace and Conflict Studies. 

In this episode, Claire and Desiree discuss how because she was labeled as a “good sleeper” as a young child that it may have contributed to a delayed diagnosis. Growing up in Puerto Rico, her family had a history of migraines so when she sought out help her doctors and neurologists focused on the migraines rather than her excessive daytime sleepiness. 

Despite struggling with excessive daytime sleepiness, Desiree was always super productive during her wakefulness. She participated in extracurricular activities and completed both high school and her undergrad within three years. In 2017, after the destructive effects of Hurricane Maria, Desiree came to the States. Since coming to the States she has been able to receive better Narcolepsy care and get plugged into a local support group.

Desiree encourages everyone to listen to their bodies and intuition and to not give up advocating for yourself until you find out what is “wrong” with your body. 

You can follow Desiree @uniboricua on Instagram. She recommends the following Facebook groups — Foothills Narcolepsy Support Group (Specifically for individuals living in North-Western North Carolina and Southern Virginia), Narcolepsy Humor, and Narcolepsy Support Group.

Dr. Grandner is the Director of the Sleep and Health Research Program at the University of Arizona , Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center , and an Associate Professor in the Department of Psychiatry at the UA College of Medicine , with joint appointments in the Departments of Medicine, Psychology ( UA College of Science ), Nutritional Sciences ( College of Agriculture and Life Sciences ), and Clinical Translational Science . His research focuses on how sleep and sleep-related behaviors are related to cardiovascular disease, diabetes, obesity, neurocognitive functioning, mental health and longevity.

In this episode, Claire and Dr. Grandner discuss how although he is a clinical psychologist, his focus is on sleep behavior. He is interested in understanding collectively our relationship with sleep and what causes disruptions in our sleep and therefore affects our day-to-day functions.

Dr. Grandner shares what his lab is currently studying, but also deep dives into how sleep greatly affects our mental health, mental wellness, memory and mental acuity. He shares his insight on how diet, nutrition and sleep all intricately interact. Dr. Grandner is constantly asking, “How do we improve people’s sleep?”

We really appreciate learning about sleep and sleep health from a sleep behavioral approach, thank you Dr. Grandner for your time and sharing with our community.

 To learn more about Dr. Grandner’s research and work you can check his website . You follow Dr. Grandner @michaelgrandner on Twitter and @drgrandner on Facebook.

Nicole Kenyon is a person with Narcolepsy Type 1. She is also a multi-faceted Narcolepsy advocate. She is an author of a memoir, a blogger, legislative advocate, personal trainer and the face of @fitniknarcoleptic Instagram where she shares workout routines.

In this episode, Nicole shares how she struggled with excessive sleepiness most of her childhood, but because she was very athletic it was often glossed over. Multiple times she went to doctors seeking help but whether it was her weight or her active lifestyle, they didn’t listen and her diagnosis was delayed. It wasn’t until college, while talking to a fellow rugby teammate who recently was diagnosed with Narcolepsy did she find the answer to her experience as well.

Despite knowing she had Narcolepsy it still took a while before getting diagnosed, and the doctor who initially oversaw her treatment didn’t provide effective care. Today, Nicole has a great sleep specialist. Because of her arduous experience, Nicole is passionate about advocating for CWN. 

Nicole in early 2020 was diagnosed with MS. This has brought about new questions on whether MS caused her Narcolepsy. Nicole has invested in herself through fitness and a healthy lifestyle. She offers insight into the importance of working out for health reasons and learning to love yourself. 

You can follow Nicole at @fitniknarcoleptic on Instagram. You can read her memoir here Part 1 and Part 2 . You can also read her blog here .

Matthew Horsnell is a person with Narcolepsy Type 1. He also is a multi-faceted Narcolepsy advocate. He’s a speaker, a blogger, legislative advocate and Narcolepsy support group leader.

In this episode, Matthew and Claire discussed how becoming a dad pushed him to figure out his extreme daytime sleepiness that he dealt with throughout his childhood.  He, in his words, “passed the test with flying colors,” and was diagnosed with Narcolepsy Type 1. 

After navigating living with Narcolepsy, being a parent and generally being an adult for a few years, Matthew realized he wanted to be vocal about his Narcolepsy and spread Narcolepsy awareness. Matthew is a generous Narcolepsy advocate. He first entered into advocacy through the Know Narcolepsy awareness campaign . He participated in Project Sleep’s Rising Voices of Narcolepsy Program to help him confidently speak about living with Narcolepsy. Today, he advocates by speaking at events, webinars and participating as a legislative advocate in DC. He writes blogs on Health Union about living with Narcolepsy. He facilitates a weekly online support group through Wake Up Narcolepsy.  He also is an active social media advocate posting and spreading awareness with the hashtag = #worldsstrongestperson havingnarcolepsywithcataplexy .

Matthew shares about how exercise, therapy, support groups, and connecting with the Narcolepsy community have brought about a fuller life. We really appreciated Matthew’s honesty and empathy that he offers in sharing his experiences living with Narcolepsy.

You can follow Matthew at @mhorsnell on Instagram @matthorsnell . You can read his writings about Narcolepsy for Health Union here . You can watch his Rising Voices of Narcolepsy Story Sharing Event. You can also watch his presentation, “Social Support and Counseling: Navigating Narcolepsy And Mental Health Comorbidities” during Wake Up Narcolepsy REAL: Navigating Narcolepsy and Mental Health Education Day Webinar.

Grace McGinnis is a college student studying pre med, a Division 1 college athlete and also a person with Narcolepsy Type 1.

In this episode, Grace and Claire discuss how Grace functioned as a “sleepy child” and how she was aware at a young age that her experience of sleepiness wasn’t normal. In her sophomore year of high school, her health and performance as a swimmer were deteriorating. She sought insight from doctors. Around the 5th doctor, they suggested she get a sleep test. She was diagnosed with Narcolepsy Type 1. 

Now, Grace is in college and is also a competitive swimmer for the University of Miami! Grace candidly shares how she navigates her daily life of practice, school and friendship. She recommends structure, schedule and naps! She also offers insight into what it has been like to be so transparent about her Narcolepsy.

Grace’s honesty is so welcoming and it is no surprise as she has created a blog called Sleep G , to share her experience with sleep health and Narcolepsy.

You can follow Grace at @sleepyg_zzz and @Grace_McGinnis on Instagram. She recommends joining Narcolepsy groups on Facebook because as she says, “It’s a great way to connect with people and learn more.”

Dr. George Church is a Professor at Harvard & MIT, co-author of 580 papers, 143 patent publications & the book “Regenesis”; developed methods used for the first genome sequence (1994) & million-fold cost reductions since (via fluor-NGS & nanopores), plus barcoding, DNA assembly from chips, genome editing, writing & recoding; co-initiated BRAIN Initiative (2011) & Genome Projects, machine learning for protein engineering, tissue reprogramming, organoids, xeno-transplantation, in situ 3D DNA, RNA and protein imaging. 

He is also a person with Narcolepsy Type 1. 

In this episode, Dr. Church shares his diagnosis story which occurred alongside his daughter’s diagnosis of Narcolepsy. He offers insight on how he navigated his symptoms prior to diagnosis. He also shares how he currently manages his symptoms to live optimally at home and in his thriving lab. Claire was fortunate enough to have Dr. Church explain what his lab focuses on and if he has any future plans to conduct Narcolepsy research. 

You can follow Dr. George Church on Twitter @geochurch and learn more about his research and work here .

Ginna Freehling is a neuroscience graduate and works in cancer clinical research at a biotech company. She is also a PWN.

In this episode, Ginna shares how at the age of twenty she started experiencing symptoms of Narcolepsy. In the process of trying to figure out what was going on, she was discouraged by her sleep specialist to not seek a formal diagnosis. For the next few years, she managed her symptoms on her own. Finally, as symptoms worsen she was able to get a sleep test at Stanford and was diagnosed with Narcolepsy Type 1.

Ginna offers insight on medication titration, her experience with disclosing her diagnosis with work, navigating friendship and her passion for sleep education. She says, “As a society, we don’t put enough emphasis on the value of sleep.”

You can follow on Instagram  @Ginna24 . She says, “The XYREM/XYWAV Facebook group has been helpful to learn about others’ experiences in switching to XYWAV from XYREM.”

Ginna also offers, “In general I would say exercise and a diet low in simple carbohydrates can help with EDS. I follow a gluten-free diet due to a wheat allergy and IBS but have subsequently found that it helps my daytime wakefulness as well. Individuals with resources surrounding this include Belle Hutt  @bellehutt  on Instagram and Gina Dennis’ page  madcapnarcolepsy.com. ”

You can follow Wake Up Narcolepsy at  @narcolepsy_360  on Instagram,  @wakeupnarcolepsy  on Instagram and Facebook and  @wakenarcolepsy  on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Dr. Jennifer Gudeman is the Vice President, Medical and Clinical Affairs at Avadel Pharmaceuticals. In this episode, Dr. Gudeman and Claire discuss how Avadel Pharmaceuticals is seeking FDA approval for a once-nightly form of sodium oxybate (FT218) for the treatment of EDS and cataplexy in people with Narcolepsy.

Dr. Jennifer Gudeman was appointed Vice President, Medical and Clinical Affairs at Avadel in December 2020. Avadel is a global biopharmaceutical company committed to improving the standard of care for people with Narcolepsy. Dr. Gudeman and her team are focused on publications of primary and secondary data from the phase 3 REST-ON trial of investigational once-nightly FT218 and building out the medical affairs programs. They are also leading an ongoing open-label extension clinical study, called Restore, to evaluate the long-term safety and tolerability of investigational once-nightly FT218.

Dr. Gudeman has published numerous peer-reviewed papers and provided domestic and international presentations on partnership with industry for drug development. In 2017, Dr. Gudeman received the Healthcare Businesswomen’s “Rising Star” award. During her career, she has led or contributed to six commercial product launches and three clinical development programs, as well as led interactions with medical societies and patient advocacy organizations to help ensure that commercial medications fulfill their clinically proven therapeutic benefits to patients and providers. Prior to joining Avadel, Dr. Gudeman was Vice President, Medical Affairs at AMAG Pharmaceuticals, overseeing a team of medical science liaisons and scientific communications. Dr. Gudeman graduated summa cum laude with a bachelor’s degree in pharmacy and magna cum laude with a doctorate in pharmacy from St. Louis College of Pharmacy in 1999 and 2000, respectively.

Travis Pavlicek is a husband, father of three and his son Cruz is a child with Narcolepsy.

In this episode, Travis shares how the onset of Cruz’s Narcolepsy symptoms escalated within a span of 3 weeks. He details how his family struggled to find a doctor who knew what was going on with Cruz until finally they drove through the night to Mayo Clinic in Rochester, Minnesota, and got a consultation from Dr. Kotagal.

Travis also shares how the diagnosis of Narcolepsy Type 1 affected the entire family. Claire and Travis reflect on the co-morbid and behavior issues that arise for children with Narcolepsy. Also how while establishing accommodations for CWN there is a lot of education involved to help administration and teachers understand Narcolepsy. 

Travis really advocates for parents with CWN to connect with other parents on Facebook groups, to read about children and adult experiences, and be honest with your immediate community. Finally, Travis shares how WUN’s Narcolepsy Family Camp had a profound effect on Cruz.

You can follow Travis on Instagram @ travispavlicek and on Facebook @travis.pavlicek .

Here are some Facebook groups that Travis recommends: Narcolepsy Support Group, Wake Up Narcolepsy, Parents of Children with Narcolepsy, XYREM/XYWAV Support Group, Project Sleep, More Than Tired and Know Narcolepsy. 

You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Shamarla Morgan is a PWN and a Narcolepsy advocate.

In this episode, Shamarla shares how despite a self-diagnosis of Narcolepsy Type 1 within the first year of her symptoms, it took four years for her to receive a proper diagnosis. She experienced many frustrating interactions with doctors who didn’t take her communication about the disorder and her symptoms seriously. They chose to test her for other issues. 

What Shamarla experienced was medical racism and part of her Narcolepsy advocacy is to help raise awareness and educate doctors so that other Black Americans and people of color will be listened to when they communicate their symptoms.

Shamarla also shares her experience with not taking medication and the decision to take medication when she was in college. Shamarla is really intune with her body and her biggest lifestyle recommendation is to take naps. Sleep is medicine!

You can follow Shamarla on Instagram @sincerelyymorgan and on Facebook @shamarla.morgan .

Dr. John Peever is a professor of Cell and Systems Biology at the University of Toronto.

In this episode, Dr. Peever shares why he got into Narcolepsy and other sleep disorders research. He shares what his latest research is focusing on and how sleep research may influence future Narcolepsy treatments. 

In his efforts through research and the Canadian Sleep Society, he highlights how essential sleep is part of daily lives and our overall health.

You can learn more about Dr. John Peever’s research here . 

Ginger Zee is the chief meteorologist for ABC News, author, advocate and a person with Narcolepsy. 

In this episode, Ginger shares her journey to being diagnosed with Narcolepsy Type 2. She also shares how her mental health was affected by her drug prescriptions to her Narcolepsy symptoms. 

Claire and Ginger discuss how she handles her Narcolepsy while always having to be prepared to travel for work as a chief meteorologist for ABC News when a major weather event takes place. Ginger details her pregnancy experiences and being a mother of two. On top of her work as a meteorologist, Ginger is also an author. Ginger has written a memoir, Natural Disaster–I cover them, I am one, and a YA fiction series called Chasing Helicity .

Ginger is an advocate for both Narcolepsy awareness and encouraging young people to go into STEM.

You can follow Ginger at @ginger_zee on Instagram, @gingerzeetv on Facebook, and @ginger_zee on Twitter. You can check out her books on her website .

Belle Hutt is a fitness instructor, influencer, author, advocate and a PWN. 

In this episode, Belle shares her journey to being diagnosed with Narcolepsy Type 1. She also shares how she navigated her education while having Narcolepsy and not feeling comfortable to disclose to her professors about it. Ultimately, she decided to get personal trainer certification. 

Gradually Belle felt more confident sharing her reality of life with Narcolepsy. She began a blog and talked about it along with fitness on her Instagram. She found that exercise GAVE her energy. Belle was featured in a BBC documentary about her Narcolepsy and her online community blossomed. This year Belle published Energetic Narcoleptic, a book that shares her story, simple workout routines, easy nutritional meals and more all designed to help promote energy for people with Narcolepsy and those without. On top of all of that, Belle continues to be a fitness instructor at a gym in Amsterdam and online with her Belle Hutt Live Community.

We are grateful for Belle’s advocacy and partnership, as she has participated in leading at session at our Narcolepsy Summer Camp and interview on fitness for Doing Life During COVID-19 mini-series. 

You can follow Belle at @bellehutt on Instagram. You can check out her website ( www.bellehutt.com ) and her blog ( https://energeticnarcoleptic.tumblr.com/ ). To join her Belle Hutt Live Community, you can learn more @bellehuttlivecommunity on Instagram.

Listen on iTunes  |  Stitcher  | Overcast | Google Play  |  Spotify  | Or right here!

Dr. Indra Narang is the Director of Sleep Medicine at the Hospital for Sick Children, in Toronto, Canada. She is also an Associate Professor at the University of Toronto. Dr. Narang specializes in many sleep disorders including Pediatric Obstructive Sleep Apnea and Narcolepsy. She established the first pediatric Narcolepsy clinic in Toronto which is now a large multi-disciplinary team effort.

In this episode, Dr. Narang talks about her journey into pediatric sleep medicine. She shares what new medicines she is interested in and how it will affect children with Narcolepsy’s symptom management. She also shares her current research focuses on the impact of Narcolepsy on mental health in children and their families. Dr. Narang is qualitatively exploring the symptoms of Narcolepsy on the quality of life and functioning in adolescents.

Emily Kreuziger is a mom, a professional snowmobiler and a person with Narcolepsy. 

In this episode, Emily shares her long diagnosis process. After being diagnosed and learning more about Narcolepsy, she realized her first symptoms started 10 years prior to her actual diagnosis. She also shares how she went from originally being diagnosed with IH, then Narcolepsy Type 1 to now her proper diagnosis of Narcolepsy Type 2.

As a new mom, Emily generously shares her experience of becoming pregnant, her decision to go off meds, the delivery and now, what it’s like to be back on medication with a baby.

Emily also is a professional snowmobiler. It’s a family affair, which is awesome, but Emily goes into detail on how she manages her Narcolepsy symptoms and energy as she trains and races on a snowmobile. 

You can follow Emily at @kreuziger_racing on Instagram, Kreuziger Racing and Emily Kreuziger on Facebook, and @girlswithsnowmobiles on YouTube.

Gary Rutter is a sheep shearer, a dad and a person with Narcolepsy. You read it right, a sheep shearer, a job so physical that you burn the same amount of calories as if you just ran a marathon.

In this episode, Gary shares how he came about doing his unique occupation. He also shares that he was diagnosed with Narcolepsy Type 1 just a few years ago despite experiencing symptoms since he was in middle school. Since his proper diagnosis, Gary has been navigating Narcolepsy treatment, his occupation and most recently becoming a dad. He shares how he has been working to have his sleep schedule in line with his sons. Gary is very intuned with his body and has been experimenting and learning ways to be efficient with his energy use. We must say it’s very interesting and inspiring.

You can follow Gary at  @gary.rutter82  on Instagram,  @rut82  on Facebook and at  @garyrutter13  on Twitter.

Dr. Deborah Hartman leads the global research program for Narcolepsy and other sleep-wake disorders at Takeda, a biopharmaceutical company.

In this episode, Dr. Hartman talks about Takeda’s approach to studying sleep-wake disorders and the importance of working together with people with Narcolepsy to better understand what is needed, and with the scientific and medical community to develop potential new therapies. Dr. Hartman and Claire discuss the lack of understanding around Narcolepsy, including the difference between Narcolepsy Type 1 and Narcolepsy Type 2. Importantly, Dr. Hartman digs into the science behind sleep-wake disorders, including the cause of Narcolepsy Type 1 and how researchers have identified the neuropeptide orexin as the master regulator of sleep and wakefulness.

Additionally, Dr. Hartman walks through the process of discovering a new drug and conducting clinical trials, as well as how the ongoing COVID-19 pandemic has impacted research worldwide. You can learn more about ongoing clinical trials in Narcolepsy here: https://www.wakeupnarcolepsy.org/research/clinical-trials/ .

Thank you to Dr. Hartman for joining us and to Takeda for their partnership and ongoing research into sleep-wake disorders like Narcolepsy. You can follow Takeda at @TakedaPharma Twitter.

TW: This episode discusses sexual assault and rape, which may be triggering for some individuals.

Lauren Thomas is a person with Narcolepsy, a Narcolepsy advocate and works in the champagne business.

In this vulnerable and candid episode, Lauren shares how she was diagnosed with Narcolepsy just a little over a year and a half ago, but recounts how Narcolepsy symptoms were part of her childhood. Lauren also shares her journey with mental health issues, which she now considers were linked to Narcolepsy and directly contributed to her delayed diagnosis. After college, she finally saw an endocrinologist, who was helping her with weight loss and recommended a sleep study. This was a pivotal experience that led to a diagnosis of Narcolepsy Type 1 at the age of 28.

Despite Lauren’s long journey to diagnosis, she’s taken time to fine tune her medication and adapt her life to support her symptom management, and during this period began to work for her family’s company, Cheurlin Champagne, the 1st African American-owned Champagne Company.

Lauren also tested positive for COVID-19 this past March. She shares her experience fighting the virus and how her symptoms weren’t necessarily the standard symptoms being communicated.

You can follow Lauren at @lmt826 on Instagram and her family’s business, Cheurlin Champagne, @cheurlin1788   on Instagram. If you are interested in finding out more information about Cheurlin Champagne go to www.cheurlin.com . Lauren recommends Wide Awake and Dreaming by Julie Flygare. She is on the planning committee for World Narcolepsy Day with Project Sleep . She also recommends an alarm clock called MedCenter. She says, “ I am obsessed with my talking alarm clock. I can set up to 4 different alarms at a time and it literally says ‘the time is …. this your reminder to take your meds..’ relentlessly, it’s annoyingly efficient!”

Dr. David Ingram is a pediatric sleep physician at Children’s Mercy Hospital. In addition to caring for children with sleep problems in clinic, he is the founding editor of the ATS Pediatric Sleep Case Series and is adjunct faculty in the department of psychology where he teaches a college Sleep & Dreams course.

In this episode, Dr. David Ingram shares when he first learned about sleep medicine and why he chose to become a sleep medicine clinician. Dr. Ingram also shares how he approaches his pediatric treatment of children with Narcolepsy (CWN). Claire and Dr. Ingram discuss transitional care for CWNs, assessing driving readiness in adolescents with Narcolepsy and current research he is conducting in collaboration with Wake Up Narcolepsy. Dr. Ingram shares what surprised him about his findings in the recent research study. Its purpose is to better define the delivery of comprehensive care for children with Narcolepsy, with a multidisciplinary approach to treatment.

Dr. Ingram was interviewed for WUN’s March blog post “ Pediatric Narcolepsy – Expert Insight”

A Wake Up Narcolepsy backed research study was published in the Journal of Clinical Sleep Medicine in January 2021. Dr. David Ingram lead the study. To read up about their finding click here.

We are grateful to Dr. Ingram’s dedication to pediatric sleep medicine and his work to help expand the field’s understanding of effective treatment for CWNs and their families.

Shannon Burkoth is a person with Narcolepsy, mother and Narcolepsy advocate in the rare disease space.

In this episode, Shannon shares how she was diagnosed with Narcolepsy when she turned 30, but since then has realized she experienced Narcolepsy symptoms since she was a child. Shannon also offers her journey to finding the right doctor and medication. She highlights how people with Narcolepsy often deal with multiple comorbid issues which can be exacerbated with the wrong medication.

Shannon also shares her journey to becoming a Narcolepsy and rare disease advocate. She highlights the grief experience after being diagnosed and no longer able to do the activities she once enjoyed. Through conferences, meeting other advocates, and participating in the Rising Voices of Narcolepsy program, Shannon is empowered to share her story to educate and create awareness.

Shannon, thank you for your advocacy! You can follow Shannon at @shannon.burkoth on Instagram and @sburkoth on Facebook. You can learn more about Shannon’s advocacy work at shannonburkoth.com . Shannon says, “ I want all people with Narcolepsy to know they are not alone and there is an incredible community waiting to embrace them!” Shannon recommends Project Sleep’s Rising Voices of Narcolepsy program , Wake Up Narcolepy’s Online Support Groups , Narcolepsy 360 podcast , and Wake Up Narcolepsy’s Family Camp for CWN.

Kelly Main is a person with Narcolepsy studying law and an expert sailor living in New Zealand.

In this episode, Kelly shares that she struggled with Narcolepsy symptoms since her childhood, but because she was so active in sports her diagnosis was delayed. Doctors believed she was tired from growing and her very physical activity. Kelly has had a passion for sports and found herself excelling once she discovered sailing. She was on a competitive school sailing team, they ended competing in New Zealand & Australia Secondary School Championships. Her team won ALL the races that day.

Kelly also shares her experience navigating friendships and social life while undiagnosed and how she struggled with people not understanding her sleepiness. In university, Kelly began researching her symptoms and found information on Narcolepsy. She took the evidence to a doctor, conducted a sleep test and was diagnosed. This was less than a year ago.

It was a pleasure to hear Kelly’s story. You can follow Kelly at @kelimain on Instagram.

Thaddeus Bath is a person with Narcolepsy and was a part of Wake Up Narcolepsy’s 2020 #TeamWUN for the Boston Marathon. 

In this episode, Thaddeus shares how he was diagnosed with Narcolepsy Type 2 in 2016. He discusses how sobriety helped realize that there was something bigger happening with his sleep issues. He also shares how fitness is an active passion of his. He is training for his black belt in Taekwondo, regularly goes to the gym to lift AND He runs…not just 5ks but half marathons, marathons and ULTRA marathons (100 miles long). 

Thaddeus was a part of the 2020 #TeamWUN for the Boston Marathon. Together, they trained and worked to raise $50,000 for Narcolepsy research. Although a marathon is hardly a big feat for him anymore, it was an honor for him to participate in the Boston Marathon through spreading Narcolepsy awareness and raising funds for Narcolepsy research. 

You can follow Thaddeus at @thaddeus_bath on Instagram and @thaddeusbath on Facebook.

Mike McHargue is a bestselling author of Finding God in the Waves, and soon to be released You’re a Miracle (and a Pain in the Ass). He is the host of Ask Science Mike podcast and co-founded The Liturgist Podcast. He also is an international speaker, science advisor and story consultant for film and television. In 2019, he was diagnosed with Narcolepsy Type 1.

In this episode, Mike shares how a health crisis led to multiple diagnoses, including Narcolepsy Type 1. He discusses how he is adapting to a new lifestyle and despite his multiple comorbid conditions, he is able to continue to do fulfilling work. Mike also gives insight on how his family is adapting to the changes as well. 

Mike had a great book come out in 2020, You’re a Miracle (and a Pain in the Ass), which he and Claire dive into. Mike sees his position in the public eye as an opportunity to be  “open, honest and un-self conscious” about his disabilities.

You can follow Mike at @mikemchargue on Instagram, Twitter and Facebook. You can learn more about his new book and podcast at https://asksciencemike.com/ .

Doing Life During COVID-19 Miniseries

Doing Life During COVID-19: Homeschooling During a Pandemic with Lindsay Jesteadt

Wake Up Narcolepsy’s former executive director, Claire Crisp, talks with Lindsay Jesteadt, former director of development at Wake Up Narcolepsy. Claire has experiencing homeschooling and Lindsay has a PhD in Educational Leadership with an emphasis on Special Education Policies and Procedures. She has held an assistant principal position and teaching graduate-level students online. Both Claire and Lindsay are parents to children with Narcolepsy (CWN).

In this discussion, Claire and Lindsay share their current experience homeschooling their kids while working a full-time job while safer at home protocols are in place. They share insights about the main issues the educational system is facing during the mandated homeschooling. They discuss from their experience the potential positives and negatives for CWN being educated at home. They share resources that may be helpful for students and parents who are experiencing homeschooling during this time.

Doing Life During COVID-19: Pediatrics with Dr. Kiran Maski

In this episode, Wake Up Narcolepy’s former executive director, Claire Crisp, has a conversation with Dr. Kiran Maski, director of sleep clinic and department of neurology at Boston Children’s Hospital, about pediatric treatment during the time of COVID-19. They discuss symptom management, the effects of homeschooling, what over the counter medication you should consult with your doctor about if your child is showing symptoms of the virus and what research Dr. Maski is currently focusing on.

To learn more about the focus group she discusses please go here .

Doing Life During COVID-19: Exercise + Movement with Belle Hutt

In this episode, Wake Up Narcolepy’s former executive director, Claire Crisp has a conversation with Belle Hutt @bellehutt , a personal trainer, author and PWN about the importance of exercise and movement for PWN, especially during this time of safer at home.

Doing Life During COVID-19: Trauma + Isolation with Dr. Cynthia Eriksson and Dr. Alison Wong

Our fifth episode in our Doing Life During COVID-19 miniseries is addressing trauma, grief, isolation during the time of a global pandemic. Wake Up Narcolepsy’s former executive director, Claire Crisp has a conversation with Dr. Cynthia Eriksson, Associate Professor of Clinical Psychology and Chair the PsyD Program at Fuller Theological Seminary, and Dr. Alison Wong, Assistant Professor of Marriage and Family Therapy and Director of Research of Fuller Psychological and Family Services at Fuller Theological Seminary.

Claire, Dr. Eriksson and Dr. Wong cover how to recognize the emotions you are feeling during a traumatic global pandemic, tips on how to acknowledge your feelings, how to reduce stress, how to grieve and finally ways to find support. This conversation specifically focused on people with Narcolepsy and families of PWN.

Doing Life During COVID-19: Food + Nutrition with Chef Andre Royal

In this episode, Wake Up Narcolepsy’s former executive director, Claire Crisp, has a conversation with Andre Royal , chef, entrepreneur, author and PWN. They discuss what food to focus on to boost your immune system, to give yourself grace, tips on how to meal prep and staple pantry items to have.

Andre and Claire also talk about Andre’s new coloring book that he authored and his son illustrated- The Hippo Critic . It may be a great way to relieve stress while practicing safer at home protocols.

Here are some websites he recommends you check out to help you with cooking at home!

• tip: check the ratings and the comments of recipes you are interested in cooking)
• Cookie and Kate – Breakfast Recipes
• Excellent tips overall, even on technique
• Narcolepsy  Dietary & Lifestyle Changes

Doing Life During COVID-19: Mental Health + Mindfulness with Dr. Jason Ong

In this episode, Wake Up Narcolepy’s former executive director, Claire Crisp, has a conversation with Dr. Jason Ong, associate professor in the department of neurology at Center for Circadian and Sleep Medicine at Northwestern University Feinberg School of Medicine, about mental health, depression, anxiety and mindfulness for people with Narcolepsy, especially during this time of safer at home.

Welcome to the new season of Narcolepsy 360! Claire Crisp is an author, advocate, former executive director at Wake Up Narcolepsy and mother of a child living with Narcolepsy. In this episode, Claire shares her journey on deciding to write a memoir about the process to get her daughter, Matilda, properly diagnosed with Narcolepsy. She also shares that through writing the book, her passion and dedication to supporting and advocating for families who are navigating life Narcolepsy grew. So much so that she took on the role of executive director at Wake Up Narcolepsy!

Claire also tells us some exciting things that are happening at Wake Up Narcolepsy and how you can get involved. You can follow Claire at @londonerinla on Instagram, @clairecrisp1 on Twitter, and @claireccrisp on Facebook. Be sure to check out Claire’s book and blog at claireccrisp.com . If you are interested in any of the events, services, and support Wake Up Narcolepsy offers, please go to www.wakeupnarcolepsy.org .

Dr. Kiran Maski is a pediatric neurologist that specializes in sleep medicine. She is the director of the Neurology Sleep Clinic at Boston Children’s Hospital. In this episode, Dr. Maski shares how she got into studying sleep medicine and how she leads the Sleep Clinic at Boston Children’s Hospital. She also details how she brings in a group of other specialists that address the comorbidity that tends to come into to play with a Narcolepsy diagnosis. Dr. Maski is passionate about improving diagnostic delays and she has developed a screening tool to identify children and adolescents with Narcolepsy and Idiopathic Hypersomnia (IH) in the community. With this tool, she hopes to bring awareness about CNS Hypersomnia conditions to children, parents, teachers, school nurses and healthcare providers. She is partnering with Wake Up Narcolepsy and other sleep centers to validate this Hypersomnia Screening Tool. If you are interested in participating in the study please click here .

We are grateful for Dr. Maski who works to raise awareness of narcolepsy and prompt referrals to appropriate pediatric specialists for faster diagnoses. Disclaimer: Since recording this episode, Sodium oxybate has been approved by the FDA for pediatric use.

About The Episode

Dr. Brian Murray is an associate professor, neurology and sleep medicine at University of Toronto Department of Medicine, chair of Royal College Specialty Committee in Neurology and head of division of neurology & chair of Research Ethics Board Sunnybrook Health Sciences Center. Dr. Murray cares mostly for adult people with Narcolepsy and also, young adults with Narcolepsy transitioning from pediatrics into adult care.

In this episode, Dr. Murray shares his expertise and approach to supporting the young adult patients who are transitioning into adult care. Claire and Dr. Murray discuss college accommodations, medication responsibility, life & family planning and sleep hygiene.

Dr. Murray also offers insight into how treatment may change or rather be fine-tuned with the digitization of sleep studies. He also shares simple ways you can utilize health tracking apps on smartphones to better gather data on individual’s daily symptoms and management of those symptoms.

We are grateful for Dr. Murray’s insight and passion for treating PWNs and supporting them to have a full life.

Tara Stuart is a mother, teacher, daughter of a person with Narcolepsy and was a part of the 2019 Boston Marathon #TeamWUN. In this episode, Tara shares her memories of growing up with her father having Narcolepsy and how it affected their family.

Tara’s dad wasn’t properly diagnosis well into his late 20s early 30s. He worked for his family’s construction company where he was able to accommodate his need to take naps. Tara’s dad turned 90 in 2019, and she decided to join Wake Up Narcolepsy’s team for the Boston Marathon in honor of him. This opportunity opened up her family to reflect and have a dialogue about their childhood. Her dad has even taken to writing down his memories. It is a sweet treat to hear their story through Tara.

You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Anna Leigh Marr is an actor, writer, voice-over artist and a person with Narcolepsy. In this episode, Anna shares her diagnosis journey whereupon it took four years to get properly diagnosed and all they while she completed her bachelor of arts at Northwestern University. Claire and Anna discuss our culture’s glorification of the overworked/underslept lifestyle and how it might confuse those experiencing symptoms of Narcolepsy.

Anna also shares her experience of being an actor and writer with a focus on comedy and improv while her cataplexy was slowly developing. Anna is determined to be an advocate for others with Narcolepsy and spreading awareness through comedy that doesn’t perpetuate stereotypes or spread misinformation. Currently, she is developing a web series about a comedian trying to make in NYC while coming to terms with their Narcolepsy and cataplexy. She is highlighting the funny and potentially awkward things that Narcolepsy brings out in life.

Anna also is the co-founder of Bluelaces Theatre Co. which creates immersive, multi-sensory theatrical experiences specifically designed for audiences with autism and other developmental differences.

You can follow Anna at  @marrzipanna  on Instagram and Twitter. You can find out more about  Bluelaces Theatre Co. at   www.bluelaces.org/ . She recommends participating in the Project Sleep’s Rising Voices of Narcolepsy program. She also recommends doing  CBT (cognitive behavioral therapy)  as part of your symptom management and find a  behavioral sleep specialist  in your area.

Nicole Jeray is an LPGA tour player and long-time advocate for Narcolepsy awareness. Since graduating from Northern Illinois University, she has played professional golf worldwide for 22 years. Nicole is her own agent and has negotiated all of her sponsorship arrangements.

In this episode, we hear Nicole’s diagnosis journey and how she navigated her professional career while managing symptoms of Narcolepsy. Nicole has always been vocal and honest about her condition and discusses with Claire why she never felt the need to hide the truth of her situation. Nicole also shares lifestyle tips she has learned along the way to her professional golfing career. She is a member of the WUN board of directors and leads the Narcolepsy young adult online support groups.

You can follow Nicole at @nicole.jeray on Facebook. You can find out more about her professional golfing career at http://www.nicolejeray.com/ .

Julie Flygare is an author, founder, CEO & president of Project Sleep, an advocate and a person with Narcolepsy. She started the Narcolepsy Not Alone Campaign, the Jack and Julie Scholarships for college-age students with Narcolepsy and the Rising Voices of Narcolepsy Program.

In this episode, Julie shares her diagnosis story which led her to change her career trajectory and embark on becoming a vocal advocate for people with Narcolepsy. Her advocacy has allowed her to write a memoir, found a non-profit, work in the public policy space, create international social campaigns and develop programs that empower other PWNs to become advocates. She also shares the exciting World Narcolepsy Day launch which took place September 22, 2019.

This episode is jam-packed with information about the programs and support Project Sleep is currently offering. Julie and Claire discuss what is going on with federal funding for sleep and Narcolepsy research, how to use social media as an advocate and what it’s like to write a memoir!

It was such a pleasure to hear Julie’s story and work. You can follow Julie at  @REMRunner  on Instagram & Twitter and  @JulieFlygareAuthor  on Facebook. You can learn more about advocacy work at www.julieflygare.com . You can also follow Project Sleeps efforts at  @project_sleep  on Instagram & Twitter and  @ProjectSleepAwareness on Facebook. You can learn more about the programs, initiatives and support Project Sleep offers at   www.project-sleep.com .

You can follow us at  @narcolepsy_360  on Instagram,  @wakeupnarcolepsy  on Instagram and Facebook and  @wakenarcolepsy  on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Dr. Emmanuel Mignot is professor of psychiatry and behavioral sciences at Stanford University and director of the Stanford Center for Sleep Sciences and Medicine .  He is internationally recognized for discovering the cause of Narcolepsy.

Dr. Mignot has received numerous research grants and honors, including National Sleep Foundation and National Institute of Health Research Awards, Howard Hughes Medical Institute Investigator and McKnight Neuroscience awards, the Drs. C. and F. Demuth 11th Award for Young Investigators in the Neurosciences, the WC Dement Academic Achievement Award in sleep disorders medicine, the CINP and ACNP awards in neuropharmacology and the Jacobaeus prize.

In this episode, Dr. Mignot and Claire discuss what led him to research Narcolepsy. He details the important research breakthroughs that have occurred the past couple of decades and also shares what his current focus is in research around Narcolepsy.

Claire and Dr. Mignot talk about a few causes of Narcolepsy and why he enjoys being a clinician, treating people and children with Narcolepsy.

We are so grateful for the research and work Dr. Mignot is doing and how understanding Narcolepsy as autoimmune disease can continue to open new doors for research, develop more effective medicine and better the lives of people with Narcolepsy.

You can learn more about Dr. Emannuel Mignot’s work at  Standford Medicine Center for Narcolepsy . You can follow Standford Sleep Medicine at  @stanfordsleepmedicine  on Instagram and  @stanfordsleepmed  on Facebook.

Monica and David Gow are co-founders and board members of Wake Up Narcolepsy. They are parents of a young adult with Narcolepsy. In this episode, Monica and David share their journey on getting their son properly diagnosed with Narcolepsy. The struggle and gross negligence of doctors, who didn’t take their sons symptoms seriously, led them to start Wake Up Narcolepsy, a non-profit organization to raise research funds for a cure and raise awareness about Narcolepsy.

This month they are celebrating the 10 year anniversary of Wake Up Narcolepsy. Monica and David also tell us about how it all started and what they hope Wake Up Narcolepsy offers in the next 10+ years.

You can follow Monica @ wognom on Twitter. If you are interested in any of the events, services and support Wake Up Narcolepsy offers, please go to www.wakeupnarcolepsy.org .

Matt Hieb is the father of Madi, a child living with Narcolepsy (CWN). In this episode, Matt recounts the journey on getting Madi properly diagnosed with Narcolepsy. She was five when her symptoms started, so doctors didn’t take her symptoms as signs of a sleep disorder.

Since Madi’s diagnosis, the Hiebs have been learning their new “normal.” Matt shares first-hand experience advocating for Madi in her school, to her doctors and even to Madi herself. He touches on how Narcolepsy affects Madi socially and how they have started multiple fundraising initiatives to promote awareness and offset travel cost for CCK.

Matt recommends two Facebook Groups- Parents of Children with Narcolepsy (United States) and Online Auction to Support Camp for Children with Narcolepsy

Kelsey Biddle is a person with Narcolepsy (PWN) that was diagnosed in 2018 with Narcolepsy Type 1. In this episode, Kelsey shares the unique journey of being diagnosed within six weeks of the onset of symptoms.

Kelsey has taken this past year to fully transition into her “new normal” by finding the right medications and creating a supportive schedule that allows her to do her job well as a clinical research coordinator in an Alzheimer’s research group in the Psychiatry & Neurology department at Brigham & Women’s Hospital.

Kelsey shares with Claire how she has allowed herself to grieve since coming to terms with her Narcolepsy, but also she hasn’t given up hope in becoming a doctor. Kelsey offers great advice on self-care and how she schedules her days to promote wakefulness. Oh, and Kelsey was part of Wake Up Narcolepsy’s 2019 Team for the Boston Marathon and worked to raise $50,000 for narcolepsy research.

You can follow Kelsey at @biddlekd on Instagram and Facebook. You can also follow her @kbiddle616 on Twitter. If you are interested in Kelsey’s story click here .

You can follow us at @narcolepsy_360 on Instagram and   @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Andre Royal is a father, chef, entrepreneur and person with Narcolepsy. In this episode, Andre shares his complicated journey to get properly diagnosed since he was living with multiple complicated medical conditions.

Getting diagnosed created a career crossroads for Andre. Since then, Andre has worked to find a career that will best support him and his schedule but also fulfill him in the work that he is doing. Feeling inspired by the power of social media, Andre began posting food creations on Instagram which built his reputation in his community. This has led him to be sponsored by food companies but also launch a non-profit!

Suddenly Sleepy Sleepwalk is an annual 5k that raises awareness about Narcolepsy in Eugene, Oregon. It is a fun-filled family event! In 2020, Suddenly Sleepy became a non-profit and continued to expand its opportunities to raises awareness about Narcolepsy.

You can follow Andre at @chef_andre_royal on Instagram and @chefandreroyal on Facebook. You can also learn more about Suddenly Sleepy Sleepwalk here and follow along at @suddenlysleepysleepwalk5K on Instagram

This is this first of a two-episode series in our deep dive into Idiopathic Hypersomnia (IH) and potential relation to Narcolepsy Type 2. This week we are speaking Dr. David Rye.

Dr. David Rye is professor of neurology at Emory University, board certified in neurology and sleep medicine. Dr. Rye is also chair of the Scientific Advisory Board for Hypersomnia Foundation.

In this episode, Claire and Dr. Rye discuss Idiopathic Hypersomnia, another complex sleep disorder that often takes people years to get properly diagnosed. He details the differences between IH and Narcolepsy and current treatments for Idiopathic Hypersomnia. He also shares the good work that Hypersomnia Foundation is doing to inform and spread awareness about IH.

To find out more information about Idiopathic Hypersomnia go to www.hypersomniafoundation.org . You can Follow Hypersomnia Foundation at @hypersomniafoundation on Instagram and Facebook and @hypersomnianews on Twitter.

Elle Wales is a graphic designer, known as Falling Asleep Elle (on the internet), creator of Narcolepsy memes and a person with Narcolepsy (PWN).

In this episode, Elle shares her diagnosis journey with Claire and how she navigated her university education while figuring out how to best manage symptoms. In the midst of all these transitions, Elle’s imagination, creative talents, passion for advocacy and honesty influenced her to first create a Narcolepsy guidebook for her honours project, which you can access on falling-asleep.com . Elle also discusses the transition from school to maintain full-time work.

Elle has continued her creative advocacy endeavors by creating #NarcolepsyMemes. #NarcolepsyMemes are shareable images or gifs that usually speak about the reality of living with Narcolepsy in a humorous, but not belittling, way. Through Instagram and #NarcolepsyMemes, Elle educates, advocates and simply shares the day-to-day life of a PWN. She also has been honest and open about her mental health and how it does/does not relate to her Narcolepsy.

It was such a pleasure to hear Elle’s story and work. You can follow Elle at @falling_asleep_elle on Instagram and @fallingasleepnarcolepsy on Facebook. You can learn more about Narcolepsy on falling-asleep.com . Elle’s from Australia, so she recommends the Narcolepsy Support Australia Facebook Group. She also recommends the Rising Voices of Narcolepsy Program facilitated by Project Sleep.

Charlie Bain is a person with Narcolepsy, who first noticed symptoms of Narcolepsy at 19. In this episode, Charlie shares his experience of getting diagnosed with Narcolepsy and taking time off from school to adapt to a new lifestyle. He also advises on ways to utilize accommodations during college and he shares his experience transitioning into a career. 

Charlie also offers some great lifestyle tips and creative ways to integrate napping while having a full-time job.

Kevin Cosgrove is the co-founder of Wake Up Narcolepsy, Biologic/Dermatology Sales Professional and a person with Narcolepsy.

In this episode, Kevin details his diagnosis process which led him to found Wake Up Narcolepsy with Monica and David Gow, with the intention to spread awareness about Narcolepsy and fund Narcolepsy research. He sheds light now the processes to diagnosis can be delayed due to individuals learning to adapt and mask their symptoms. 

Claire and Kevin discuss how over the years, he has maintained a career as a sales professional by really understanding what is body needs in terms of medication, lifestyle habits and a support system. He also shares how at certain points due to life and work, he’s had to prioritize which hobbies, golf and djing, he can spend time doing. 

He wisely shares, “Don’t fight the disease, embrace it.”

In this final episode of season one, both Kevin and Claire reflect on the growth of Narcolepsy awareness, research breakthroughs and medications in the past 10 years. They also share their hope and vision for the NEXT 10 years. 

Henry Nicholls is a person with Narcolepsy, an author and science journalist specializing in evolutionary biology, conservation, the history of biology and sleep. His most recent publication is SLEEPYHEAD: The Neuroscience of a Good Night’s Rest .

In this episode, Henry shares about his own experience in getting his Narcolepsy diagnosed and how he has been able to build a career through writing and journalism. He also details how in writing a book about sleep disorders, he was able to identify that he deals with multiple sleep disorders beyond Narcolepsy, and also how this is common for people living with Narcolepsy. He traveled all over the world interviewing sleep experts, clinicians and researchers about sleep disorders– in many ways, it was clarifying and illuminating to see the science behind disorders that affect him. So much so that he has been able to achieve better sleeping habits and get actually restful sleep!

You can follow Henry @WayOfThePanda on Twitter and @SleepyheadByHenryNicholls on Facebook. If you are interested in learning more about his journalism and books, please go to http://henrynicholls.com .

Gina Dennis is a person with Narcolepsy (PWN), but is also a FWN (family with Narcolepsy), since her mother, son and ex-husband all have Narcolepsy. In this episode, Gina shares the decades-long journey to be diagnosed with Narcolepsy. She remembers having Narcoleptic symptoms as early as 5 years old but wasn’t diagnosed until her thirties.

Once her son was diagnosed, she deep dived on the internet to help finds ways to mitigate his symptoms. In her research, she found adapting to a low-carb eating lifestyle could mitigate symptoms. Naturally, she experimented with herself first and convinced her family to try this eating habit as well. Gina, her mom and son all are keto and it has brought greater energy and outlook to them all.

Gina has since shared her findings with the Narcoleptic community, became a Certified Health Coach and launched a website called Madcap Narcolepsy. In her free time, she coaches others on holistic approaches and lifestyle changes to live a more wakeful life.

You can follow Gina @madcapnarcolepsy on Facebook, Instagram, Youtube and @ MadcapMiss on Twitter. Interested in learning more about Gina and her work? Go to madcapnarcolepsy.com .  Interested in learning more about Keto? Join her Madcap Keto for Narcolepsy Facebook Group .

Erin Carey is a mother of five girls and two are children with Narcolepsy (CWN). When Kyla started showing symptoms of Narcolepsy, Erin initially thought it was diabetes. When Kyla communicated she was falling asleep at school, Er in knew, due to her sister’s own diagnosis of Narcolepsy, that Kyla most likely had Narcolepsy as well.

In this episode, Erin shares how once Kyla was properly diagnosed she knew that Kendall, Kyla’s younger sister, also had Narcolepsy. Erin had her family get genetic testing to see if any of the other kids had the genetic marker. Kendall did and shortly after was diagnosed with Narcolepsy.

As a mother two children with Narcolepsy, Erin details how she works to allow her family to be able to do what they love. When it comes to medication, schedule and schooling Kyla and Kendall have differing plans, but the entire family has adapted to the Keto diet. Erin now is a keto coach and also started a non-profit FACES (Families and Children Experiencing Symptoms) of Narcolepsy.

You can follow Erin and learn more about FACES at https://facesofnarcolepsy.org/ and   @FACESofNarcolepsy on Facebook. You can also learn more about keto on Keto with Erin Facebook Group  

Sara Kowalczyk is a mother and women’s health patient advocate, clinical researcher, regulatory writer and person with Narcolepsy. In this episode, Sara shares her diagnosis story but also her decision and experience in becoming a mother.

Claire and Sara discuss how Sara developed expertise on Narcolepsy and women’s health while going through two pregnancies with Narcolepsy with cataplexy. She conducted a survey and has led support groups surrounding Narcolepsy, pregnancy and motherhood.

Sara earned two masters-level degrees from Boston University in medical science and public health (epidemiology and biostatistics). She has conducted independent survey-based research studies on pregnancy perceptions and experiences, cognitive-related symptoms and patient reported outcomes (the latter is called the Boston University Narcolepsy and Idiopathic Hypersomnia Patient Perspectives Study (BUNIHPPS)). When Sara isn’t working on her passions related to patient advocacy, she is enjoying time spent with her family and adorable children, Brendan and Julia.

Sara recommends the following Facebook Groups: Xyrem Support group, Pregnant people with Narcolepsy and mothers, Narcolepsy/cataplexy education focused group and BUNIHPPS.

This is this second of a two-episode series in our deep dive into I diopathic Hypersomnia (IH) and potential relation to Narcolepsy Type 2. This week we are speaking Betsy Ashcraft.

Betsy Ashcraft is a retired lawyer who practiced law for over 20 years specializing in securities and corporate litigation, and capital markets. She is also the mother of a person with IH.

In this episode, Claire and Betsy discuss the journey to get her son properly diagnosed with IH and how originally doctors believed he had Narcolepsy. Betsy details the symptoms that she saw in her son that didn’t line up with Narcolepsy symptoms and how an article on Dr. David Rye helped her realize he had IH.

Betsy also shares about the programs, awareness work and resources the Hypersomnia Foundation provides to those who are seeking out more information about Idiopathic Hypersomnia.

Dr. Jason Ong is an associate professor in the department of neurology and the Center for Circadian and Sleep Medicine at the Northwestern University Feinberg School of Medicine.  

In this episode, Dr. Ong and Claire discuss Narcolepsy and mental health. Dr Ong’s primary research interest is focused on non-pharmacological sleep disorders, including cognitive-behavioral therapy (CBT) and mindfulness meditation. He has a clinical practice where he delivers CBT for Insomnia and provides psychosocial support for patients with Narcolepsy.

He also shares recent findings is research on how to improve sleep quality through behavioral sleep medicine.

We are so grateful for the research and work Dr. Ong is doing and how understanding and effective way to treat mental health and sleep habits can improve the lives of people with Narcolepsy.

Kayla Douglas, known as  @nomadnarcolepsy on Instagram, is a person with Narcolepsy, a Narcolepsy life coach and an extensive world traveler!

In this episode, Kayla details her childhood with Narcolepsy that led to diagnosis. As a child, she loved to read about the world and in her mind, she traveled all over. It was in college that she was able to make that dream a reality through studying abroad. After that first bit of travel she was motivated to travel more and boy did she travel! 

It wasn’t until she left the US to work in Spain, she realized she wasn’t thriving despite being on medication and managing symptoms. With the help of a doctor, she was able to reduce her medication by changing her diet and implementing other stress-relieving practices.

To date, Kayla has traveled to AT LEAST 22 countries! Also, she is currently medication free. Kayla offers advice on how to travel with Narcolepsy, and now is offering life coaching services to people with Narcolepsy. 

You can follow Kayla at   @nomadnarcolepsy on Instagram and Facebook. You can learn more about her coaching services and read her blog at   https://www.kaylamdouglas.com/ .

Kayla recommends Positively Narcolepsy facebook group and Going Beyond Coping blog, in her words, “As they have helped me so much with keeping a positive attitude and finding the most creative little life hacks.” She also recommends Gina Denis, aka Madcap Narcolepsy , if you’re interested in learning more about the ketogenic diet. She also recommends the Rising Voices of Narcolepsy Program facilitated by Project Sleep. Because of Rising Voices, she felt empowered to publish this first writing piece –  Scared of the Dark: The Narcolepsy Symptoms that Nobody Talks About .

Julia Steiner

Dr. eric zhou, andee coppel.

The Narcolepsy 360 Podcast was produced by Elizabeth Joy Windom and sponsored by Jazz Pharmaceuticals.

One person’s journey to diagnosis and living with narcolepsy

Tim couldn’t figure out why he was so tired. later, he found out that he had narcolepsy..

Tim was always tired. As a sophomore in high school, he would fall asleep in class. As an adult living in New York City, he’d worry that he would drift off on the subway and miss his stop. For many years, that was just the way life was — until he was diagnosed with narcolepsy.

The journey to diagnosis

Tim’s journey to diagnosis was complicated, which is true for many people with the condition. When he experienced symptoms in high school, he assumed it was because he was overworked, stressed or simply a teenager going through a phase. “I would fall asleep while walking down a hallway in school and didn’t even realize that was unusual because I lived with these symptoms my whole life," Tim said.

Aside from excessive daytime sleepiness, Tim also experienced disturbed nighttime sleep, where he’d wake up as many as 20 times in one night. “Your functionality is about the same as somebody who has been up for 48 to 72 hours. Everybody says they're tired, but it’s not this same level of sleepiness. This is a different level of tired," he said. He also experienced sleep paralysis, hallucinations and even minor episodes of cataplexy, which is the sudden and brief loss of muscle strength or tone brought on by certain emotions or situations such as laughter or surprise.

Eventually, things got so bad for Tim that he did see a healthcare provider but didn’t get a satisfactory answer right away. Over the course of multiple appointments and many years, he took a variety of glucose tests and thyroid tests as doctors attempted to determine what was causing his symptoms. Doctors also explored whether he might have chronic fatigue syndrome, but they concluded that wasn’t it, either. Despite his persistent desire to figure out what was going on, nothing led to an explanation for his exhaustion. Eventually, he began to wonder if something was even wrong at all.

“The symptoms created a journey for me to try to understand what’s going on." Tim said. "Why I’m feeling this way, is this normal? Is this how everybody feels?”

Still, the cause wasn’t obvious; real-life narcolepsy doesn’t look like it does in the movies, Tim noted.

“Probably the single biggest misconception that I’ve run into with narcolepsy is that people have this movie and television view of somebody who just falls asleep randomly in the middle of sentences or in the middle of eating, and for most people, that’s not the experience,” he said.

It wasn’t until 2015 that everything started to make sense. A friend told Tim the story of how her brother was diagnosed with narcolepsy, a rare neurological disorder that affects approximately 165,000 people in the United States. The circumstances and symptoms leading to her brother’s diagnosis sounded oddly familiar to Tim, and he was eager to learn more.

After meeting with a sleep specialist who agreed that it did sound like he may have narcolepsy, Tim underwent a sleep study that confirmed he did. 

The diagnosis explained everything. Narcolepsy is a chronic sleep disorder that affects how the brain processes sleep-wake cycles. Normally, states of wakefulness and sleep occur at one time and in a regular pattern. This means people can stay awake all day and stay asleep at night. These states of wakefulness and sleep are regulated by chemicals in the brain such as hypocretin and histamine. For people affected by narcolepsy, low levels or an absence of these chemicals results in a blurring between these normally separate states. As Tim experienced, the most common symptom of narcolepsy is excessive daytime sleepiness. There’s no cure, and it often lasts for a person’s entire lifetime. 

Understanding the diagnosis

Tim described the diagnosis as something that gave him feelings of both relief and fear. He was happy to have an explanation for his symptoms but also had to fully absorb what it meant. Now that he knew the underlying reason for his excessive daytime sleepiness, Tim could no longer write it off as just being tired.

He began to question what the diagnosis meant for his day-to-day life: “Am I going to be able to do the things that I wanted to do, now that I know I have these physical limits?”

To help him deal with those questions and concerns, Tim became committed to finding ways to manage his narcolepsy symptoms so that they wouldn’t get in the way of him achieving his career and life goals.

Managing the impact

While there is no cure for narcolepsy, Tim has found various techniques to help manage his symptoms. For example, he tries to budget his energy, and participation in the activities and social engagements depending on how he is feeling.

“Being able to say "no" to activities is something I've learned to be confident and comfortable in because it's necessary for my mental and physical health,” Tim said. “I've found that I am still able to do the things I want, just with a little bit more care and a little bit more caution."

Tim also has a strong support circle of friends, family, and people in the narcolepsy community that play a major role in his ability to cope with symptoms. Being able to speak to them frankly about what he’s going through has helped them understand his struggles and the calculations he needs to make.

“By having a strong support circle of friends, family, and people in the narcolepsy community who understand what I'm going through and can relate - I've found I'm able to cope because of the people in my life,” he said.

"Learning to manage my symptoms took a lot of time and a lot of support from medical professionals, the narcolepsy community, and my friends,” Tim said. “Through these support circles in my life, I was able to get my symptoms under control and I now have a great career and a beautiful home. And ultimately I am in a much better and happier place"

Embracing the future

Moving to New York City as an adult offered Tim many new opportunities – including a chance to make the most of his condition when he’s not on a typical sleep schedule. “It’s wonderful to know that if I’m awake at two in the morning I can go jump on the train, I can go to Midtown and get a burger from my favorite burger joint, or walk a couple blocks up to my local deli.”

In those early hours of the morning Tim has also gotten a chance to see a side of New York City that most people don’t, a side he’s been able to document through his love of photography. That serenity helps keep him moving at the speed of life.

With a strong support network, smart time management and an openness to new experiences, Tim’s been able to make life with narcolepsy work for him. While this condition certainly still poses challenges, Tim now knows that they don’t have to get in the way of living. “What I found is that there is hope and there is a way forward. I don’t have to let this define me.”

To learn more about living with narcolepsy, visit www.KnowNarcolepsy.com .

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Narcolepsy is a sleep disorder that makes people very drowsy during the day. People with narcolepsy find it hard to stay awake for long periods of time. They fall asleep suddenly. This can cause serious problems in their daily routine.

Sometimes narcolepsy also causes a sudden loss of muscle tone, known as cataplexy (KAT-uh-plek-see). This can be triggered by strong emotion, especially laughter. Narcolepsy is divided into two types. Most people with type 1 narcolepsy have cataplexy. Most people who don't have cataplexy have type 2 narcolepsy.

Narcolepsy is a life-long condition for which there's no cure. However, medicines and lifestyle changes can help manage the symptoms. Support from others — family, friends, employers and teachers — can help people cope with the disorder.

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The symptoms of narcolepsy may get worse during the first few years of the disorder. Then they continue for life. They include:

Excessive daytime sleepiness. People with narcolepsy fall asleep without warning. It can happen anywhere and at any time. It may happen when you're bored or during a task. For example, you may be working or talking with friends and suddenly fall asleep. It can be especially dangerous if you fall asleep while driving. You might fall asleep for only a few minutes or up to a half-hour. After waking, you'll often feel refreshed but you'll get sleepy again.

You also may experience a decrease in how alert and focused you feel during the day. Daytime sleepiness often is the first symptom to appear. Feeling sleepy makes it hard to focus and function.

Some people with narcolepsy continue doing a task when they fall asleep briefly. For example, you may fall asleep while writing, typing or driving. You might continue to perform that task while asleep. When you awaken, you can't remember what you did, and you probably didn't do it well.

Sudden loss of muscle tone. This condition is called cataplexy. It can cause slurred speech or complete weakness of most muscles. Symptoms may last up to a few minutes.

Cataplexy can't be controlled. It's triggered by intense emotions. Often the emotions that cause cataplexy are positive. Laughter or excitement may cause the symptoms. But sometimes fear, surprise or anger can cause the loss of muscle tone. For example, when you laugh, your head may drop without your control. Or your knees may suddenly lose strength, causing you to fall.

Some people with narcolepsy experience only one or two episodes of cataplexy a year. Others have several episodes a day. Not everyone with narcolepsy has these symptoms.

Sleep paralysis. People with narcolepsy often experience sleep paralysis. During sleep paralysis, you can't move or speak while falling asleep or upon waking. It's usually brief — lasting a few seconds or minutes. But it can be scary. You may be aware of it happening and can recall it afterward.

Not everyone with sleep paralysis has narcolepsy.

• Hallucinations. Sometimes people see things that aren't there during sleep paralysis. Hallucinations also may happen in bed without sleep paralysis. These are called hypnagogic hallucinations if they happen as you fall asleep. They're called hypnopompic hallucinations if they happen upon waking. For example, you might feel as if there is a stranger in your bedroom. These hallucinations may be vivid and frightening because you may not be fully asleep when you begin dreaming.
• Changes in rapid eye movement (REM) sleep. REM sleep is when most dreaming happens. Typically, people enter REM sleep 60 to 90 minutes after falling asleep. But people with narcolepsy often move more quickly to REM sleep. They tend to enter REM sleep within 15 minutes of falling asleep. REM sleep also can happen at any time of the day.

Other characteristics

People with narcolepsy may have other sleep disorders. They might have obstructive sleep apnea, in which breathing starts and stops during the night. Or they may act out their dreams, known as REM sleep behavior disorder. Or they may have trouble falling asleep or staying asleep, called insomnia.

When to see a doctor

See your health care provider if you experience excessive daytime sleepiness that affects your personal or professional life.

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The exact cause of narcolepsy is unknown. People with type 1 narcolepsy have low levels of hypocretin (hi-poe-KREE-tin), also called orexin. Hypocretin is a chemical in the brain that helps control being awake and when you enter REM sleep.

Hypocretin levels are low in people who experience cataplexy. Exactly what causes the loss of hypocretin-producing cells in the brain isn't known. But experts suspect it's due to an autoimmune reaction. An autoimmune reaction is when the body's immune system destroys its own cells.

It's also likely that genetics plays a role in narcolepsy. But the risk of a parent passing this disorder to a child is very low — only about 1% to 2%.

Research also indicates that in some cases narcolepsy may be linked to exposure to the swine flu (H1N1 flu) virus. It also may be linked to a certain form of the H1N1 vaccine. The vaccine was administered in Europe.

Typical sleep pattern vs. narcolepsy

The typical process of falling asleep begins with a phase called non-rapid eye movement (NREM) sleep. During this phase, brain waves slow. After an hour or so of NREM sleep, brain activity changes and REM sleep begins. Most dreaming occurs during REM sleep.

In narcolepsy, you may suddenly enter REM sleep without going through NREM sleep. This can happen both at night and during the day. Cataplexy, sleep paralysis and hallucinations are similar to changes that occur in REM sleep. But in narcolepsy they happen while you're awake or drowsy.

Risk factors

There are only a few known risk factors for narcolepsy, including:

• Age. Narcolepsy typically begins between ages 10 and 30.
• Family history. Your risk of narcolepsy is 20 to 40 times higher if you have a close family member who has it.

Complications

• Public misconception of the condition. Narcolepsy can cause problems at work or in your personal life. Your performance may suffer at school or work. Others might see people with narcolepsy as lazy or lethargic.
• Effects on intimate relationships. Intense feelings, such as anger or joy, can trigger cataplexy. This can cause people with narcolepsy to withdraw from emotional interactions.
• Physical harm. Falling asleep suddenly may result in injury. You're at increased risk of a car accident if you fall asleep while driving. Your risk of cuts and burns is greater if you fall asleep while cooking.
• Obesity. People with narcolepsy are more likely to be overweight. Sometimes weight rapidly increases when sleepiness symptoms start.

Narcolepsy care at Mayo Clinic

• Kryger M, et al., eds. Principles and Practice of Sleep Medicine. 7th ed. Elsevier; 2022. https://www.clinicalkey.com. Accessed Dec. 19, 2022.
• Martin VP, et al. Sleepiness in adults: An umbrella review of a complex construct. Sleep Medicine Reviews. 2022; doi:10.1016/j.smrv.2022.101718.
• Ferri FF. Narcolepsy. In: Ferri's Clinical Advisor 2023. Elsevier; 2023. https://www.clinicalkey.com. Accessed Dec. 19, 2022.
• Ropper AH, et al. Sleep and its abnormalities. In: Adams and Victor's Principles of Neurology. 11th ed. McGraw Hill; 2019. https://accessmedicine.mhmedical.com. Accessed Dec. 19, 2022.
• Narcolepsy fact sheet. National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet. Accessed Dec. 19, 2022.
• Chien P-Y, et al. Pharmacological interventions for excessive daytime sleepiness in adults with narcolepsy: A systematic review and network meta-analysis. Journal of Clinical Medicine. 2022; doi:10.3390/jcm11216302.
• Narcolepsy following 2009 Pandemrix influenza vaccination in Europe. Centers for Disease Control and Prevention. https://www.cdc.gov/vaccinesafety/concerns/history/narcolepsy-flu.html. Accessed Dec. 30, 2022.
• Justinussen JL, et al. How hypocretin agonists may improve the quality of wake in narcolepsy. Trends in Molecular Medicine. 2023; doi:10.1016/j.molmed.2022.10.008.
• Sodium oxybate oral. Facts & Comparisons eAnswers. https://fco.factsandcomparisons.com. Accessed Jan. 4, 2023.
• Oxybate salts (calcium, magnesium, potassium and sodium). Facts & Comparisons eAnswers. https://fco.factsandcomparisons.com. Accessed Jan. 4, 2023.
• Ami TR. Allscripts EPSi. Mayo Clinic. July 6, 2022.

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• Neurobiology of Sleep and Wakefulness Sleep-Wake State Stability Role of the Hypothalamus Histamine There’s More to Know
• Pathophysiology of Narcolepsy Etiology Sleep-Wake State Instability Manifestations of Sleep-Wake State Instability
• Clinical Assessment of Narcolepsy Evaluating Excessive Daytime Sleepiness Evaluating Cataplexy Evaluating Other Narcolepsy Symptoms
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Perspectives From Real People Living With Narcolepsy

Listening to stories from people living with narcolepsy can help when evaluating the impact of the disorder in clinical practice..

Your patients living with narcolepsy have their own unique stories to tell. Hear from real people living with narcolepsy as they share their stories about the impact of the disorder on their lives.

Excessive Daytime Sleepiness (EDS)

Excessive daytime sleepiness and its daily impact.

Excessive daytime sleepiness has significantly affected Nicki’s life, especially due to “surprise naps” that have caused her to sleep through her own birthday celebration.

Recognizing Narcolepsy and Excessive Daytime Sleepiness

In college, Matt recognized that he was always the first one to leave the party, but he didn’t know it was because of excessive daytime sleepiness associated with narcolepsy.

What Does Excessive Daytime Sleepiness (EDS) With Narcolepsy Feel Like?

Emily, scott, sharon, & sean.

Four Personal Stories: Four people living with narcolepsy share their experience of what excessive daytime sleepiness (EDS) feels like for them.

What Cataplexy Can Feel Like

Nicki describes what triggers her cataplexy and what it feels like when she loses muscle control.

Emotions That Can Trigger Cataplexy Attacks

Cataplexy attacks have interfered with big moments in Sean’s personal and professional life, like when he got engaged. Narcolepsy with cataplexy affects everyone differently, but attacks are often brought on by strong emotions. 1

Avoiding Emotions to Control Cataplexy

Partial cataplexy in his face has impacted Sean’s life. Avoiding emotions to control attacks has become part of his personality.

Social Situations Triggered My Cataplexy

After experiencing cataplexy while holding her infant son, Sharon started to avoid social situations.

Biggest Impact of Narcolepsy

Scott shares why he believes narcolepsy changed the way his friends and family saw him and how the disorder set the course for his life today.

A Parent’s Perspective: Being a Parent With Narcolepsy

Scott, a stay-at-home dad, shares his journey navigating fatherhood while living with narcolepsy.

Resources and Tools

Preview and download resources and tools to help sharpen your clinical skills.

Pathophysiology

In most people, narcolepsy is caused by loss of hypocretin.

• American Academy of Sleep Medicine. International Classification of Sleep Disorders . 3rd ed. Text Revision. American Academy of Sleep Medicine; 2023.

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Performance of routine tasks without awareness.

Sudden and brief loss of muscle tone, often triggered by strong emotions or certain situations. Narcolepsy with cataplexy is known as narcolepsy type 1.

Complete collapse to the ground; nearly all skeletal muscles are involved.

Only certain muscle groups are involved.

Biological clock mechanism that regulates the 24-hour cycle in the physiological processes of living beings. It is controlled in part by the SCN in the hypothalamus and is affected by the daily light-dark cycle.

Frequent awakenings and inappropriate transitions between states of sleep and wakefulness during nighttime sleep.

The inability to stay awake and alert during the day.

A neurotransmitter in the brain that supports wakefulness.

Vivid, realistic, and sometimes frightening dream-like events that occur when falling asleep.

Also known as orexin. A neuropeptide that supports wakefulness and helps suppress non-REM sleep and REM sleep.

Primary brain region for regulating the timing of sleep-wake states.

Unintentionally falling asleep due to excessive daytime sleepiness. Also known as “sleep attacks.”

Brief, unintentional lapses into sleep or loss of awareness.

A validated objective measure of the tendency to fall asleep in quiet situations.

People living with narcolepsy type 1 have low levels of hypocretin.

Narcolepsy without cataplexy; the cause of narcolepsy type 2 is unknown.

A state of sleep characterized by slower-frequency, more synchronized neuronal activity and decreased muscle tone. Deep stages help to restore the body.

A multiparameter test that monitors physiologic signals during sleep; used as a diagnostic tool in sleep medicine.

A state of sleep characterized by fast-frequency, desynchronized activity on EEG, vivid dreams, and loss of muscle tone. Normally occurs 60-90 minutes after sleep onset. Also known as “paradoxical sleep.”

Brief loss of control of voluntary muscles with retained awareness at sleep-wake transitions.

An abnormal sleep phenomenon characterized by REM sleep occurrence within 15 minutes of sleep onset; may occur during nighttime sleep or daytime napping.

A group of neurons located in the hypothalamus that are essential for promoting non-REM sleep. These neurons project to all wake-promoting regions to inhibit wakefulness and promote non-REM sleep during the night.

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about sleep, wakefulness, and narcolepsy

Discover more through interactive exploration of the science of sleep and wakefulness

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“No two people experience narcolepsy the same way .” – Katie

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Every Story About Narcolepsy Is Different

Hearing personal stories about the impact of symptoms can make a difference..

Living with narcolepsy can be a challenge, but knowing you are not alone may help. Meet this extraordinary community of people who are living with narcolepsy. In their own words, they share how narcolepsy has had an impact on their everyday lives and how they have learned to manage day to day.

Visit the Video Library to hear personal stories from people living with narcolepsy

Check out In the Know: A Narcolepsy Mini-Podcast for conversations on issues important to the narcolepsy community

Discover Know Our Stories: A Narcolepsy Blog written by people living with narcolepsy

Living with narcolepsy Graduate student

Ijeoma doesn’t let her narcolepsy diagnosis define her.

Living with narcolepsy Community director and blogger

Matt has succeeded in navigating daily life through a positive approach and self-advocacy. Hear Matt share the importance of speaking up.

Living with narcolepsy Teacher

For Leah, every day is a new day.

She has found peace in what she can do and has stopped judging herself by impossible standards.

Living with narcolepsy Salesperson

Controlling his emotions to avoid cataplexy has become part of his personality.

Living with narcolepsy Consultant

Katie’s mantra in challenging times is to not believe in broken dreams.

Living with narcolepsy Stay-at-home dad

Scott has found the inner resilience to become the father he wants to be. See Scott's perspective on being a parent while living with narcolepsy.

Living with narcolepsy Healthcare administrative assistant

Narcolepsy is part of Emily's life, but it doesn’t rule her life.

A key part of navigating her narcolepsy symptoms involves self-advocacy at home, with her healthcare providers, and at work.

Living with narcolepsy Case manager/nurse

Taking the time to find the right support group helped Sharon understand she is not alone.

Living with narcolepsy Philosophy graduate student

Nicki missed her 21st birthday because of her narcolepsy.

Living with narcolepsy Business owner

Gina doesn’t feel guilty setting boundaries in her relationships.

She has found several different ways to manage living with narcolepsy day to day.

Living with narcolepsy Author and professional chef

Andre makes sure he is an active participant in his own journey by taking part in things that inspire him and by being his own advocate. See his perspective and his tips for advocating for yourself.

Living with narcolepsy Finance and technology

Tim found relief in his diagnosis and encourages others to put their health first.

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This link will take you to a site where you can learn about a prescription treatment option for excessive daytime sleepiness (EDS) or cataplexy in adults with narcolepsy.

Vivid dream-like experiences that occur while falling asleep or while waking up.

Occurs at night and includes dreams; muscles are not active to prevent people from acting out dreams.

People with type 1 narcolepsy can be diagnosed by their cataplexy or low levels of hypocretin (also known as orexin).

The cause of type 2 narcolepsy is unknown.

Restorative sleep state with decreased muscle tone.

Daytime and evening habits to improve sleep.

Brief total loss of voluntary muscle control when falling asleep or while waking up.

Also known as orexin, hypocretin is a naturally occurring chemical in the brain that helps maintain wakefulness and prevent non-REM sleep and REM sleep from occurring at the wrong time.

Unintentionally falling asleep due to excessive daytime sleepiness; “sleep attacks.”

The inability to stay awake and alert during the day; a constant need for sleep or unintentionally falling asleep.

A naturally occurring chemical in the brain that helps maintain wakefulness.

Frequent shifts between different states of sleep and wakefulness at night.

Difficulty focusing or concentrating.

Brief loss of muscle tone with retained awareness, often triggered by strong emotions.

Performance of routine tasks without awareness or memory.

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Recognition of Narcolepsy in Your Patients

CME | CNE | CPE 0.50 Credits

• Description

Educational Objective

• CME/CE Information
• Faculty and Disclosures

Instructions

Program Description

The diagnostic journey patients with narcolepsy face is complex and multifaceted. Plagued by the Hollywood stigma and trope of comedic relief, narcolepsy is often misunderstood by patients and health care professionals (HCPs) alike. Misdiagnosis and diagnostic delay result in an oftentimes tumultuous journey for patients with this rare condition, further impacting their lower quality of life (QoL) due to untreated symptoms. It is imperative that HCPs recognize the signs, symptoms, and related QoL impact of narcolepsy in order to aid the patient in their diagnostic journey and, if possible, discuss referral to a sleep specialist.

The first episode of this CMEO BriefCase series on narcolepsy focuses on screening for narcolepsy based on patient presentation, description of function, and changes in QoL to facilitate initiation of a treatment plan to optimize patient outcomes.

Intended Audience

Sleep specialists, primary care practitioners, pulmonologists, neurologists, psychiatrists, physician associates (PAs), nurse practitioners (NPs), nurses, and pharmacists.

Commercial Supporter

This program is supported by an independent medical education grant from Jazz Pharmaceuticals.

Upon completion of the educational activity, participants should be able to:

• Screen for narcolepsy based on patient presentation or patient or family/caregiver description of function and changes in QoL

Accredited Provider

This educational initiative is provided by CME Outfitters.

Jointly Accredited Provider

In support of improving patient care, CME Outfitters, LLC, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

Physicians (ACCME)

Designation Statement

CME Outfitters, LLC, is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians. CME Outfitters, LLC, designates this enduring activity for a maximum of 0.50  AMA PRA Category 1 Credits TM . Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Nurses (ANCC)

This activity is designated for 0.50 contact hours. Nurse practitioners can apply for AMA PRA Category 1 Credit(s) TM through the American Academy of Nurse Practitioners (AANP). AANP will accept AMA PRA Category 1 Credit(s) TM from Jointly Accredited Organizations. Nurse practitioners can also apply for credit through their state boards.

California Residents: This continuing nursing education activity was approved by the California Board of Registered Nursing. CME Outfitters LLC’s provider number is CEP15510.

Physician Assistants (AAPA)

CME Outfitters, LLC, has been authorized by the American Academy of PAs (AAPA) to award AAPA Category 1 CME credit for activities planned in accordance with AAPA CME Criteria. This activity is designated for 0.50 AAPA Category 1 CME credits. Approval is valid until expiration date. PAs should only claim credit commensurate with the extent of their participation.

Pharmacists (ACPE)

This application-based activity is approved for 0.50 contact hours (0.05 CEUs) of continuing pharmacy credit.

Activity UAN: JA0007185-0000-23-091-H01-P

Additional Credit Information

ABIM MOC Credit: Successful completion of this CME activity, which includes participation in the evaluation component, enables the participant to earn up to 0.5 medical knowledge MOC points in the American Board of Internal Medicine's (ABIM) Maintenance of Certification (MOC) program. Participants will earn MOC points equivalent to the amount of CME credits claimed for the activity. It is the CME activity provider's responsibility to submit participant completion information to ACCME for the purpose of granting ABIM MOC credit.

Royal College MOC Credit: Through an agreement between the Accreditation Council for Continuing Medical Education and the Royal College of Physicians and Surgeons of Canada, medical practitioners participating in the Royal College MOC Program may record completion of accredited activities registered under the ACCME’s “CME in Support of MOC” program in Section 3 of the Royal College’s MOC Program. MIPS Improvement Activity: Completion of this accredited CME activity meets the expectations of an Accredited Safety or Quality Improvement Program (IA_PSPA_28) for the Merit-based Incentive Payment Program (MIPS). Clinicians should submit their improvement activities by attestation via the CMS Quality Payment Program website.

Planners' and Managers' Disclosures

Shirley Michelle Franks, MSN, APRN, FNP-BC (peer reviewer)  has no disclosures to report. Susan Perry (planning committee) has no disclosures to report. John Jones, PharmD (planning committee)  has no disclosures to report. Susan H Yarbrough, CHCP (planning committee)  has no disclosures to report. Sandra Caballero, PharmD (planning committee) has no disclosures to report. Sharon Tordoff (planning committee)  has no disclosures to report.

Conflict of Interest Disclosure Policy

It is the policy of CME Outfitters, LLC, to ensure independence, balance, objectivity, and scientific rigor and integrity in all of their CE activities. Faculty must disclose to the participants any relationships with commercial companies whose products or devices may be mentioned in faculty presentations, or with the commercial supporter of this CE activity. CME Outfitters, LLC, has evaluated, identified, and mitigated any potential conflicts of interest through a rigorous content validation procedure, use of evidence-based data/research, and a multidisciplinary peer review process.

Disclosure of Unlabeled Use

Faculty of this CE activity may include discussions of products or devices that are not currently labeled for use by the FDA. The faculty have been informed of their responsibility to disclose to the audience if they will be discussing off-label or investigational uses (any uses not approved by the FDA) of products or devices.

Richard K. Bogan, MD, FCCP, FAASM (Moderator) Associate Clinical Professor University of South Carolina Medical School, Columbia, SC Medical University of South Carolina, Charleston, SC Principal, Bogan Sleep Consultants, LLC Columbia, SC

Dr. Bogan reports the following financial relationships: Consultant : Avadel; Axsome Therapeutics, Inc.; Harmony Biosciences; Jazz Pharmaceuticals, Inc.; Oventus; and Takeda Pharmaceuticals U.S.A., Inc. Research Support : Apnimed; Avadel; Bayer; Bresotec Medical; Eisai Inc.; Fisher Paykel Healthcare; FRESCA Medical; Idorsia Pharmaceuticals US Inc.; Jazz Pharmaceuticals, Inc.; LivaNova; Merck & Co., Inc.; NLS Pharmaceutics; Philips; Roche; Sanofi; Sommetrics, Inc.; Suven Pharma; Takeda Pharmaceuticals U.S.A., Inc.; and Vanda Pharmaceuticals Inc. Speakers Bureau : Eisai Inc.; Harmony Biosciences; Idorsia Pharmaceuticals US Inc.; and Jazz Pharmaceuticals, Inc.

Paul P. Doghramji, MD, FAAFP Senior Family Physician, Collegeville Family Practice Medical Director, Health Services Ursinus College Collegeville, PA

Dr. Doghramji reports the following financial relationships: Advisory Board: Bayer; Eisai Inc.; and Idorsia Pharmaceuticals Ltd Speakers Bureau: AbbVie Inc.; Eisai Inc.; Idorsia Pharmaceuticals Ltd; and Merck & Co., Inc. Stock Shareholder (directly purchased): CVS Health Corporation and Pfizer Inc.

In order to receive CME/CE credits, participants must complete the pre-assessment questions, post-assessment, and program evaluation. Participants must also score at least 75% on the post-assessment. Certificates will be distributed online at the conclusion of the activity. Your online certificate will be saved on myCME within your Dashboard or Transcript , which you can access at any time.

For information about the accreditation of this program, please contact Ree Whitman, [email protected] .

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Patient Case Study

Time to Complete: 30 minutes

Released:  September 25, 2023

Expires:  September 25, 2024

Maximum Credits: 0.50 / AMA PRA Category 1 Credits TM 0.50 / ABIM MOC Points 0.50 / AAPA Category 1 CME Credits 0.50 / ANCC Contact Hours 0.50 / CE for Pharmacists

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Related Activities

Differential Diagnosis for Narcolepsy

Choosing and Optimizing Therapy in Narcolepsy

Additional patient resources

Looking for more XYWAV treatment information?

Watch a xywav educational webinar.

Learn about XYWAV from experts in narcolepsy through webinars on demand. These sessions led by healthcare professionals will help you gain a deeper understanding of your condition as well as how XYWAV may help treat your cataplexy and/or excessive daytime sleepiness (EDS).

These useful resources can help

Doctor discussion guide.

To help prepare yourself to talk to your doctor about XYWAV, download and read our Doctor Discussion Guide.

XYWAV Patient Brochure

Learn important information about XYWAV, including what it is, things to know about your treatment experience, and much more.

PDF 2.78 MB

Support from someone like you: the XYWAV Mentor Program

The XYWAV Mentor Program connects you 1-on-1 with someone who has firsthand experience taking XYWAV. The XYWAV Patient Mentors understand what you are going through. They listen to you and support you, providing practical tips and meaningful insight by sharing their experiences. Get updates about the XYWAV Mentor Program, and more.

Hear from the experts how XYWAV can support you through your narcolepsy treatment journey

Get important, up-to-date information on XYWAV delivered to you by healthcare professionals through interactive live webinars.

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.

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:

• sudden onset of weak or paralyzed muscles (cataplexy)
• excessive daytime sleepiness (EDS)
• idiopathic hypersomnia (IH) in adults.

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 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 (REM) sleep, sleep paralysis, sleep talking, sleep terror, sleep-related eating disorder, sleepwalking, and other abnormal sleep-related events), somnolence, fatigue, and tremor.

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.

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

Finding support for Narcolepsy? Connect with people like you.

Living with Narcolepsy is an online patient support community that is powered by BensFriends.org , a network of patient support communities for rare diseases. Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Narcolepsy is a chronic sleep disorder, or dyssomnia, characterized by excessive sleepiness and sleep attacks at inappropriate times, such as while at work. People with narcolepsy often experience disturbed nocturnal sleep and an abnormal daytime sleep pattern, which often is confused with insomnia. Narcoleptics, when falling asleep, generally experience the REM stage of sleep within 5 minutes; whereas most people do not experience REM sleep until an hour or so later.

Narcolepsy is neurological and not caused by mental illness or psychological problems. It is most likely affected by a number of genetic mutations and abnormalities that affect specific biologic factors in the brain, combined with an environmental trigger during the brain’s development, such as a virus.

National Institutes of Health (NIH) has additional information about Narcolepsy here .

LivingWithNarcolepsy.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

Read More…

Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts . Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles . Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join.

Latest Discussions

@trust_level_0 Dear Narcolepsy Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But […]

Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare […]

Sascha Gallardo – June 15, 2020 The patients who visit our sites have tons of questions on their mind related to their symptoms, which clinic to visit, the medications they are taking, and the treatment procedures they will undergo. They want a […]

Sascha Gallardo – July 1, 2020 We’re excited to announce that Ben’s Friends has partnered with ClozTalk, a social impact company that helps charities raise people’s awareness of their mission. ClozTalk now designs apparel like t-shirts, […]

Sascha Gallardo – August 31, 2020 Delays in getting an accurate diagnosis for a rare disease is very common. Patients would visit a physician, present their symptoms, and then they would be told there is nothing wrong with them. They’d visit […]

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Scholastica’s Journey from HIV Patient to Life-Saving Case Manager

Scholastica works for KP-STAR (Key Populations Strengthening Technical Assistance Response), a U.S. Government-funded project that provides health and other crucial services in Namibia to people who are at risk of contracting HIV.  

In 2007, Scholastica tested HIV positive and started taking drugs and drinking alcohol. When doctors put her on HIV treatment, she did not take her medication regularly and soon her immune system started to weaken.

“My HIV positive diagnosis was the most difficult news at the time due to limited information, stigma, and discrimination associated with the disease. I feared dying and started abusing alcohol and drugs. My body was weak, and I was also diagnosed with tuberculosis. In 2010, I weighed merely 27 kilograms,” Scholastica recalls.

Whenever Scholastica defaulted on taking her medication, she would change to a different health facility and pretend to be a first-time client – after which she was put on HIV treatment again. She did this to avoid the stigma and discrimination that patients fear when defaulting. “My struggle to adhere to the treatment continued. I moved from one clinic to another and always registered myself as a newly diagnosed HIV patient,” she explains.

This continued until Scholastica received the opportunity to become a Peer Educator on condition that she improves. A Peer Educator is a person who reaches out to other community members who live with or are affected by HIV to convince them to receive professional care and treatment. 

She narrates that it took her several weeks contemplating whether she wanted to continue being who she was or honestly change her life and start afresh. “In the end I decided to change. I had to change not only to help my peers to take up HIV services, but also to help myself and gain control of my own life,” recalls Scholastica. 

Scholastica’s steadfastness paid off and she was finally even recruited as a Case Manager in Gobabis under the KP-STAR project. Today, her role is to ensure that clients who test HIV positive are receiving antiretroviral treatment (ART), becoming virally suppressed, and staying on their treatment. This means that a blood test does not detect HIV anymore, and the person can no longer transmit HIV to someone else. 

Scholastica also ensures that clients who test HIV negative and are at high risk of acquiring HIV are getting Pre-Exposure Prophylaxis (PrEP) medication. PrEP reduces the risk of HIV infection significantly. She also provides other health and social support services to those in need.

Being a Case Manager has been a life changer for Scholastica. “Considering my own defaulting history, I first had to evaluate myself. I took a very important step in my journey when I requested to be transferred from Katutura Health Center in Windhoek to Epako Clinic in Gobabis. At that time, my viral load was very high. But with the support of the Epako Clinic staff and USAID’s KP-STAR project I became a model HIV patient. I am now virally suppressed and proud that I cannot transmit the virus to anyone,” says Scholastica. 

Scholastica has become a role model for many people living with HIV and an advocate for the project’s Undetectable = Untransmissible (U=U) campaign. With the help of lunchbox-sized transparent containers filled with red and black beads, she demonstrates the positive effect that HIV medication has on the viral load of a patient’s blood.

As a Case Manager, Scholastica is committed to helping anyone, including people who may feel marginalized, such as female sex workers living with HIV, to lead a happy, healthy, safe, and fulfilled life. She currently manages 139 clients on ART and 51 on PrEP. 

“I enjoy my work a lot. Knowing that I have helped many people and made a difference in their lives is very satisfying,” she concludes.

Ms. Fayonce Van Wyk, Omaheke Regional Coordinator for IntraHealth Namibia, asserts that Scholastica’s openness about her HIV status makes it easier for her to carry out her work. 

“Scholastica has received case management training from IntraHealth Namibia, and she is also a certified HIV Rapid Tester.  She knows all her clients as well as their file numbers by heart which shows the high level of commitment towards her work,” says Fayonce. 

Scholastica is a living testimony of how a single person can impact others to fully benefit from services provided by the Ministry of Health and Social Services in collaboration with projects such as KP-STAR. She is also a good example of how to remain healthy and live positively with HIV.

KP-STAR is funded by the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) through the United States Agency for International Development (USAID) and implemented by Intrahealth Namibia. 

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0857 Evidence for an Independent Association of Cardiovascular Disease in Patients with Narcolepsy

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Christopher Kaufmann, Munaza Riaz, Haesuk Park, Wei-Hsuan Lo-Ciganic, Debbie Wilson, Atul Malhotra, Emerson Wickwire, R Bhattacharjee, 0857 Evidence for an Independent Association of Cardiovascular Disease in Patients with Narcolepsy, Sleep , Volume 47, Issue Supplement_1, May 2024, Page A368, https://doi.org/10.1093/sleep/zsae067.0857

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Narcolepsy is a lifelong disabling disorder causing profound daytime sleepiness. Symptoms present as early as childhood and result in marked disturbances in the life course of many persons with narcolepsy (PWN). Further, PWN experience several health conditions, including cardiovascular disease (CVD). Importantly, PWN often present with several co-occurring sleep disorders, including obstructive sleep apnea, which is a prominent risk factor for CVD. This study examined the association between narcolepsy and CVD comprehensively accounting for potential confounders predisposing PWN to CVD.

This retrospective cohort study used the 2005-2021 IBM® MarketScan® Commercial and Medicare supplemental databases to identify newly diagnosed PWN from at minimum 2 outpatient claims using the International Classification of Diseases–Clinical Modification (ICD-9/10-CM) diagnosis codes. In addition, we identified a comparison cohort of persons without narcolepsy or other hypersomnolent disorders, using propensity score (PS) matching [1: up to 3 ratios] to balance groups based on underlying demographics, the presence of relevant health conditions, including sleep apnea and diabetes, and other confounders. Using Cox proportional hazard regression, we calculated hazard ratios (HR) with 95% confidence intervals (95%CI) to estimate CVD risk outcomes (including major adverse cardiovascular events [MACE], heart failure, stroke, atrial fibrillation, and myocardial infarction [MI]) for PWN compared to non-narcolepsy. Patients were censored at the end of enrollment or up to December 13, 2021.

Among 134,067 patients included (mean age=40±16.8 years; 62% female), 34,562 were PWN and 100,405 were matched non-narcolepsy patients. Compared to non-narcolepsy patients, PWN were associated with a 77% increased risk of any CVD (HR=1.77, 95%CI=1.65-1.89) and an 82% increased risk of MACE (HR=1.82, 95%CI=1.66-1.99). PWN also were associated with an increased risk of heart failure (HR=1.64, 95%CI=1.47-1.83), any stroke (HR=2.04, 95%CI=1.82-2.29), atrial fibrillation (HR=1.58, 95%CI=1.40-1.77), and MI (HR=1.64, 95%CI=1.37-1.96) compared to non-narcolepsy patients.

Using a large representative commercial insurance claims database, our study provides evidence that narcolepsy is an independent risk factor of CVD after comprehensive matching and adjustment for relevant confounders, including sleep apnea.

This study was supported by the Sleep Research Society Foundation (Grant #: 23-FRA-001).

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