Ask the Doctor: Do Women’s Hormones Affect Their Hypersomnias?

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Can menstrual cycles trigger hypersomnia episodes? Can taking hormones tame these symptoms? And does idiopathic hypersomnia (IH) affect more women than men? We are delighted to have our Medical Advisory Board member Dr. Isabelle Arnulf, a Professor of Neurology at the Sorbonne University and one of the world’s leading experts on all forms of hypersomnia (including how hypersomnias affect women), answer these questions.


QUESTION #1: My daughter’s trigger for her sleep episodes seems to be her menstrual cycle. Her symptoms improved somewhat once she began taking birth control pills to stop her monthly period. Do you consider menstrual-related hypersomnia its own syndrome, or is it considered a type of Kleine-Levin syndrome (KLS)? Has hormonal treatment (such as that found in birth control pills) been found to be effective if a person is diagnosed with menstrual-related hypersomnia?

ANSWER: Since 2014, menstrual-related hypersomnia has been classified as a variety of Kleine-Levin syndrome. This is because the symptoms are not limited to excessive sleep and sleepiness but also include apathy (decreased activity and motivation apathy), frequent mood changes, mental slowing, and sometimes derealization. It is always recommended to try to block hormonal secretion by the hypothalamus with a normal dose birth control and to maintain continuous oral birth control to try to avoid episodes. This helps in many cases. Although some people initially have episodes only during their menstrual periods, their disease may progress and they may begin to also have episodes outside of their menstrual periods, like normal KLS. In these instances, treatment with oral birth control is not helpful.

QUESTION #2: Can you explain why IH seems to affect more women than men, and whether that is due to hormonal differences?

ANSWER: No, we have not yet found an explanation as to why IH seems to affect women more than men. This gender predominance is a recent observation, thanks to large registries of people who have IH. Research is ongoing.

Please add or update your data in the Hypersomnia Foundation’s registry at CoRDS to help answer this question!

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Disclaimer for Ask The Doctor: The medical information provided is meant for educational purposes only and is not a substitute for professional medical care and advice. Each person is different, and questions about a personal health condition should be discussed with your own healthcare professional.

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