Lynn Marie Trotti1, Jason C Ong2, David T Plante3, Catherine Friederich Murray4, Rebecca King5, Donald L Bliwise6. 1. Department of Neurology and Emory Sleep Center, Emory University School of Medicine, USA. Electronic address: Lbecke2@emory.edu. 2. Center for Circadian and Sleep Medicine, Department of Neurology, Northwestern University Feinberg School of Medicine, USA. 3. Department of Psychiatry, University of Wisconsin-Madison, USA. 4. Prior Founding Board Member, Hypersomnia Foundation, USA. 5. Current Board Member, Hypersomnia Foundation, USA. 6. Department of Neurology and Emory Sleep Center, Emory University School of Medicine, USA.
Abstract
OBJECTIVE/ BACKGROUND: Knowledge of idiopathic hypersomnia symptomatology derives from clinical case series. Web-based registries provide complementary information by allowing larger sample sizes, with greater geographic and social diversity. PATIENTS/ METHODS: Data were obtained from the Hypersomnia Foundation's online registry. Common clinical features of idiopathic hypersomnia and other central disorders of hypersomnolence were queried, for the last thirty days and when symptoms were most severe. Symptoms were compared between idiopathic hypersomnia participants with and without long sleep durations and between participants with idiopathic hypersomnia and those with either form of narcolepsy. Frequency of medication use and residual symptoms on medication were evaluated. RESULTS: Five-hundred sixty-three registry respondents were included, with idiopathic hypersomnia (n = 468), narcolepsy type 2 (n = 44), and narcolepsy type 1 (n = 51). "Brain fog," poor memory, and sleep drunkenness were all present in most idiopathic hypersomnia respondents, with brain fog and sleep drunkenness more commonly endorsed by those with long sleep durations. Eighty-two percent of participants with idiopathic hypersomnia were currently treated with medication, most commonly traditional psychostimulants such as amphetamine salts. Among treated patients, symptoms improved while on medication, but substantial residual hypersomnia symptoms remained. Participants with narcolepsy type 1 were more likely than those with idiopathic hypersomnia to endorse intentional and unintentional daytime naps and automatic behaviors. CONCLUSIONS: Symptoms of idiopathic hypersomnia extend well beyond excessive daytime sleepiness, and these symptoms frequently persist despite treatment. These findings highlight the importance of online registries in identifying gaps in the use and effectiveness of current treatments.
OBJECTIVE/ BACKGROUND: Knowledge of idiopathic hypersomnia symptomatology derives from clinical case series. Web-based registries provide complementary information by allowing larger sample sizes, with greater geographic and social diversity. PATIENTS/ METHODS: Data were obtained from the Hypersomnia Foundation's online registry. Common clinical features of idiopathic hypersomnia and other central disorders of hypersomnolence were queried, for the last thirty days and when symptoms were most severe. Symptoms were compared between idiopathic hypersomniaparticipants with and without long sleep durations and between participants with idiopathic hypersomnia and those with either form of narcolepsy. Frequency of medication use and residual symptoms on medication were evaluated. RESULTS: Five-hundred sixty-three registry respondents were included, with idiopathic hypersomnia (n = 468), narcolepsy type 2 (n = 44), and narcolepsy type 1 (n = 51). "Brain fog," poor memory, and sleep drunkenness were all present in most idiopathic hypersomnia respondents, with brain fog and sleep drunkenness more commonly endorsed by those with long sleep durations. Eighty-two percent of participants with idiopathic hypersomnia were currently treated with medication, most commonly traditional psychostimulants such as amphetamine salts. Among treated patients, symptoms improved while on medication, but substantial residual hypersomnia symptoms remained. Participants with narcolepsy type 1 were more likely than those with idiopathic hypersomnia to endorse intentional and unintentional daytime naps and automatic behaviors. CONCLUSIONS: Symptoms of idiopathic hypersomnia extend well beyond excessive daytime sleepiness, and these symptoms frequently persist despite treatment. These findings highlight the importance of online registries in identifying gaps in the use and effectiveness of current treatments.
Authors: Chad Ruoff; Fabio Pizza; Lynn Marie Trotti; Karel Sonka; Stefano Vandi; Joseph Cheung; Swaroop Pinto; Mali Einen; Narong Simakajornboon; Fang Han; Paul Peppard; Sona Nevsimalova; Giuseppe Plazzi; David Rye; Emmanuel Mignot Journal: J Clin Sleep Med Date: 2018-01-15 Impact factor: 4.062
Authors: Lynn Marie Trotti; Prabhjyot Saini; Erin Bremer; Christianna Mariano; Danielle Moron; David B Rye; Donald L Bliwise Journal: J Clin Sleep Med Date: 2022-05-01 Impact factor: 4.324