Symptoms of central disorders of hypersomnolence during phases of female hormonal transitions: an explorative self-report study

In clinical practice, women with central disorders of hypersomnolence (CDH) often report changes of symptom severity within their menstrual cycle and during menopausal transition. This explorative study among women with CDH investigates self-reported CDH symptom severity during these phases in a woman's life that are associated with female hormone transitions. N = 180 women with CDH (118 with narcolepsy type 1, 9 with narcolepsy type 2, 53 with idiopathic hypersomnia) filled out questions on CDH symptom changes within the menstrual cycle and/or during menopausal transition, if applicable to them. Within the menstrual cycle, 35.4 % of the women experience changes in any of their CDH symptoms; CDH-specific symptoms were reported to be especially worse during the (pre-)menstrual period. During and after menopause, 36.1 % reported any changes in CDH symptoms. Even though previous literature showed that women from the general population also report more sleep-wake disturbances during phases of hormonal fluctuations, the women in this study additionally reported changes in CDH-specific symptoms such as sleep paralysis, sleep-related hallucinations, and cataplexy. Results indicate that the role of female sex hormones is of importance and should be further investigated in CDH, as women with CDH may benefit from tailored treatment related to their hormonal status.