Anyone here with narcolepsy?

curlysuecurlysue McLean, VAMember

Hello all, curious if anyone here has narcolepsy (with or without cataplexy) and successfully trains for distances of 10k or more? I'm 36 now and have been doing open water swims since I was 19 in 2001. I started developing sleep problems around 2005, but was still able to get in the training (for the most part) until 2011, when getting up in the morning became extraordinarily difficult. I was diagnosed with sleep apnea in 2012, which was thought to be the root of my issues, but it would take continuous struggles with getting up and excessive daytime sleepiness for a diagnosis of narcolepsy in 2013. Although I take two medications (Nuvigil and Xyrem) for it, and am on maximum doses of each, I am still struggling a lot to get up many days of the week and am extremely tired most of the time as well. This is really cutting into training, as my mornings are pretty much the only time for swimming and am often oversleeping. My sleep doctor says that I am doing "great" despite my severe case of narcolepsy.

If you have narcolepsy, or even another medically documented sleep disorder, how are you managing it with training for long distance swimming? I have done two 10ks along with a lot of 4.4 and 5 mile swims over the years, and would like to expand to a distance of 7 miles and greater, but I'm starting to wonder if this is as good as it gets and I'm setting my sights too high? I know there are groups out there who advocate "natural" treatment for narcolepsy, but it would be disastrous if I personally was to go off narcolepsy medications. I have posed the question also to a narcolepsy support group on Facebook and no one was able to relate. Thanks for any help those others with narcolepsy or sleep disorders may be able to provide!



  • jnewton116jnewton116 SingaporeMember

    I'm afraid I can't relate to your particular issue, but I just wanted to say:


    Seriously, the fact you keep persevering is fantastic and I hope you're extremely proud of what you've achieved. Fingers crossed you can find someone out there who can relate and provide info for your situation.

    Also, don't feel the least bit bad about being on medication. Going "natural" may work for some people but it obviously doesn't work for everyone. Do what is best for you and screw the rest.

  • curlysuecurlysue McLean, VAMember

    Thanks so much for your kind words! They mean a lot to me and I am quite appreciative.

  • curlysuecurlysue McLean, VAMember

    Hello! An update to my previous post from April-- I am now getting in about 3-4 swims per week, which is more of where I would like to be in order to think about a longer swim. I am going for the 9 mile Ocean Games race in Ocean City, MD in 2019. I practiced feeding at many of my open water practices with Perpetuem and that was a game changer. I now feel that this goal is realistic, and I'm excited that I even have the opportunity to swim it with other open water friends! I'm so lucky to have them all in my life :)

    SydneDSoloflystormsrlmJaimiepavlicovAnitaLynnthelittlemerwookieBogdanZrosemarymintand 2 others.
Sign In or Register to comment.