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Narcolepsy Flares Around Hormone Cycles

It's been almost a year since I was diagnosed with Narcolepsy and Cataplexy and over the past 6 months, every month, I have really debilitating symptoms and my meds stop working altogether.

These flares are consistently around ovulation and menstruation.

Anyone else experience anything like this? My doctors were looking into possibly another autoimmune disease (like lupus) causing it but we're at a bit of a standstill now.

  1. Oh my that is so awful. I'm sorry. I'm lucky, my cycle has never affected me, no PMS or cramps. I feel so bad for people who have those things worsen other problems. Not fair!

    1. I'm sorry you have had trouble finding meds that work for you. I can totally relate to having much worse symptoms during my period; the brain fog and EDS can really double down on me. I hope that your doctors can help with, as you mentioned, a possible second diagnosis or new medications to help you during your menstruation. Best of luck!
      xoxo/zzz, Gabrielle

      1. thank you so much! I should have checked the articles first. It’s encouraging to know I’m not alone!

        1. Hi , thanks so much for posting a forum about this! I'm sad to hear you've been struggling with medication efficacy and debilitating symptoms, especially as often as you do. It is definitely an issue that I have seen among community members -- if you haven't already come across this article by one of our Health Leaders, Tatiana, I would definitely recommend it! https://narcolepsy.sleep-disorders.net/living/period-impacts

          The menstrual cycle can absolutely have an impact on chronic illness symptoms, though it's not always clear why, which can be frustrating. I hope you're able to find some relief soon!

          Best,
          Kyler (Narcolepsy.Sleep-Disorders.net Team Member)

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