Abstract Introduction Narcolepsy and idiopathic hypersomnia (IH) are characterized by excessive daytime sleepiness. They can be caused by deficiency of orexin/hypocretin, a neuropeptide that regulates sleep and wakefulness. It is estimated that 1 in 2000 people in the United States of America have been diagnosed with some form of narcolepsy or idiopathic hypersomnia. Around the world, about 3 million people are narcoleptic. Little data are available regarding the lifestyle factors in these patients. In this study, we sought to find whether lifestyle factors, including diet and physical activity are associated with the severity of sleepiness in narcolepsy and idiopathic hypersomnia. Methods We collaborated with “Hypersomnia Foundation” and “Wake Up Narcolepsy” who distributed our survey to their subscribers. The survey consisted of a series of four short subsurveys asking about the substance use, diet (MiniEAT screen), exercise (IPAQ questionnaire), and daytime sleepiness (Epworth Sleepiness Scale). The survey was anonymous and included baseline characteristics, diagnosis (Narcolepsy type 1 (NT1), Narcolepsy type 2 (NT2), or Idiopathic Hypersomnia (IH)). We considered hypersomnolence and moderate to severe hypersomnolence to be present if ESS 10 and ≥15, respectively. Results We received total of 377 individual responses. Of those, 191 responders had IH, 97 had NT1 and 89 had NT2. Median age was 31 (25, 42) and 323 identified as females, 44 males and 10 others. Median ESS was 15 (12, 18), where 285 responders had ESS 10 (76%) and 194 (51%) had ESS /=15. The ressponders with NT1 had significantly higher median ESS: 17 (12,19), than NT2: 15 (10, 17), or IH: 15(12, 17) responders (p 0.01). In multiple univariate analyses, none of the baseline characteristics, habits (smoking, alcohol or caffeine), dietary consumption (fruit, vegetable, legumes/nuts/seeds, whole or refined grains, dairy and fish/seafood) or exercise (vigourous, moderate or walking) had significant association with the degree of responders’ subjective sleepiness. Conclusion Most survey responders continue to be excessively sleepy, particularly those with NT1. There were no apparent univariate associations of underlying hypersomnolence with the baseline characteristics, habits, diet and exercise levels. Disorders of central hypersomnolence are of complex nature without easily identifiable modifiers. Support (if any) Mayo Clinic CRISP
Festic et al. (Fri,) studied this question.
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