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

Authors Barker EC, Flygare J, Paruthi S, Sharkey KM

Received 7 April 2020

Accepted for publication 17 June 2020

Published 16 July 2020 Volume 2020:12 Pages 453—466


Checked for plagiarism Yes

Review by Single anonymous peer review

Peer reviewer comments 3

Editor who approved publication: Dr Sutapa Mukherjee

Emily C Barker,1 Julie Flygare,2 Shalini Paruthi,3,4 Katherine M Sharkey5– 7

1Case Western Reserve University School of Medicine, Department of Pediatrics, Cleveland, OH, USA; 2Project Sleep, Los Angeles, CA, USA; 3Sleep Medicine and Research Center, St. Luke’s Hospital, St. Louis, MO, USA; 4Saint Louis University School of Medicine, Departments of Medicine and Pediatrics, St. Louis, MO, USA; 5Department of Medicine, The Warren Alpert Medical School of Brown University, Providence, RI, USA; 6Department of Psychiatry & Human Behavior, The Warren Alpert Medical School of Brown University, Providence, RI, USA; 7Rhode Island Hospital, Providence, RI, USA

Correspondence : Katherine M Sharkey
Alpert Medical School, Brown University, 233 Richmond Street, Providence, RI 02906 Tel +1 401-863-2450
Fax +1 401-863-2940

Abstract: 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.

Keywords: narcolepsy, cataplexy, sleepiness, hypersomnia, solriamfetol, pitolisant, sodium oxybate, children, pregnancy, lactation, stigma

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