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

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. Loui...

Descripción completa

Guardado en:
Detalles Bibliográficos
Autores principales: Barker EC, Flygare J, Paruthi S, Sharkey KM
Formato: article
Lenguaje:EN
Publicado: Dove Medical Press 2020
Materias:
Acceso en línea:https://doaj.org/article/71aec5b33e934115ad4f4c362bf537dd
Etiquetas: Agregar Etiqueta
Sin Etiquetas, Sea el primero en etiquetar este registro!
id oai:doaj.org-article:71aec5b33e934115ad4f4c362bf537dd
record_format dspace
spelling oai:doaj.org-article:71aec5b33e934115ad4f4c362bf537dd2021-12-02T11:40:08ZLiving with Narcolepsy: Current Management Strategies, Future Prospects, and Overlooked Real-Life Concerns1179-1608https://doaj.org/article/71aec5b33e934115ad4f4c362bf537dd2020-07-01T00:00:00Zhttps://www.dovepress.com/living-with-narcolepsy-current-management-strategies-future-prospects--peer-reviewed-article-NSShttps://doaj.org/toc/1179-1608Emily 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, USACorrespondence : Katherine M SharkeyAlpert Medical School, Brown University, 233 Richmond Street, Providence, RI 02906 Tel +1 401-863-2450Fax +1 401-863-2940Email Katherine_Sharkey@brown.eduAbstract: 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, stigmaBarker ECFlygare JParuthi SSharkey KMDove Medical Pressarticlenarcolepsycataplexysleepinesshypersomniasolriamfetolpitolisantsodium oxybatechildrenpregnancylactationstigmaPsychiatryRC435-571Neurophysiology and neuropsychologyQP351-495ENNature and Science of Sleep, Vol Volume 12, Pp 453-466 (2020)
institution DOAJ
collection DOAJ
language EN
topic narcolepsy
cataplexy
sleepiness
hypersomnia
solriamfetol
pitolisant
sodium oxybate
children
pregnancy
lactation
stigma
Psychiatry
RC435-571
Neurophysiology and neuropsychology
QP351-495
spellingShingle narcolepsy
cataplexy
sleepiness
hypersomnia
solriamfetol
pitolisant
sodium oxybate
children
pregnancy
lactation
stigma
Psychiatry
RC435-571
Neurophysiology and neuropsychology
QP351-495
Barker EC
Flygare J
Paruthi S
Sharkey KM
Living with Narcolepsy: Current Management Strategies, Future Prospects, and Overlooked Real-Life Concerns
description 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, USACorrespondence : Katherine M SharkeyAlpert Medical School, Brown University, 233 Richmond Street, Providence, RI 02906 Tel +1 401-863-2450Fax +1 401-863-2940Email Katherine_Sharkey@brown.eduAbstract: 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
format article
author Barker EC
Flygare J
Paruthi S
Sharkey KM
author_facet Barker EC
Flygare J
Paruthi S
Sharkey KM
author_sort Barker EC
title Living with Narcolepsy: Current Management Strategies, Future Prospects, and Overlooked Real-Life Concerns
title_short Living with Narcolepsy: Current Management Strategies, Future Prospects, and Overlooked Real-Life Concerns
title_full Living with Narcolepsy: Current Management Strategies, Future Prospects, and Overlooked Real-Life Concerns
title_fullStr Living with Narcolepsy: Current Management Strategies, Future Prospects, and Overlooked Real-Life Concerns
title_full_unstemmed Living with Narcolepsy: Current Management Strategies, Future Prospects, and Overlooked Real-Life Concerns
title_sort living with narcolepsy: current management strategies, future prospects, and overlooked real-life concerns
publisher Dove Medical Press
publishDate 2020
url https://doaj.org/article/71aec5b33e934115ad4f4c362bf537dd
work_keys_str_mv AT barkerec livingwithnarcolepsycurrentmanagementstrategiesfutureprospectsandoverlookedreallifeconcerns
AT flygarej livingwithnarcolepsycurrentmanagementstrategiesfutureprospectsandoverlookedreallifeconcerns
AT paruthis livingwithnarcolepsycurrentmanagementstrategiesfutureprospectsandoverlookedreallifeconcerns
AT sharkeykm livingwithnarcolepsycurrentmanagementstrategiesfutureprospectsandoverlookedreallifeconcerns
_version_ 1718395705845874688