Idiopathic hypersomnia symptoms over Time: Longitudinal follow up from the Hypersomnia Foundation registry

Limited data are available regarding the long-term course of idiopathic hypersomnia. We analyzed longitudinal data from the Hypersomnia Foundation Registry at CoRDS to evaluate changes in symptoms and medication usage over time.

Registry participants reporting a diagnosis of idiopathic hypersomnia were included if they completed the registry questionnaire at least twice, with at least six months before first and last questionnaire. Responses were analyzed using paired t-test for continuous variables and McNemar test for categorical variables, comparing first and last responses.

Data from three hundred twenty-three participants were included, with a mean age 35.0 ± 12.2 and 86.5 % women. Average time between first and last response was 2.4 ± 1.4 years. Symptoms remained largely stable over the 2 ½ year period, with persistent difficulty awakening (in 78.7 % at baseline and 73.0 % at follow up), daytime sleepiness (62.7 % and 61.8 %), trouble waking up and functioning with normal alertness (56.4 % and 56.4 %), requiring multiple alarms (53.4 % and 55.3 %), brain fog (46.3 % and 48.4 %), and memory problems (42.7 % and 43.4 %). Average nightly sleep duration on workdays and non-workdays and average nap duration were all stable over time. Participants made an average of 0.8 ( ± 1.1) medication changes, with most (55.4 %) participants remaining on the same medications. Comorbid mood disorders were relatively common, with a modest increase in anxiety diagnoses.

Symptoms of idiopathic hypersomnia remained relatively stable over an average of 2.4 years of follow up. Despite persistent symptoms being experienced by the majority of participants, medication changes were infrequent.