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!

Tagged:
SoloBrostar

Comments

  • jnewton116jnewton116 SingaporeMember

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

    WELL DONE

    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.

    JSwimcurlysueflystormskejoyceBrostarMLambySydneDrlmDoc2dockBridget
  • 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.
  • curlysuecurlysue McLean, VAMember

    Best update ever! On July 20, I completed the Ocean Games 9 mile race in Ocean City, MD!! The swimming part itself was easy-- the nausea from swallowing too much salt water at the beginning was what made the whole thing difficult... but I did it! My kayak pilot (yay Michele!) was amazing and with her help I accomplished my unassisted, completely legal swim :) I have now been exhausted for days due to my narcolepsy, but am so excited about the accomplishment. According to Narcolepsy Network, they think I might be the first person with narcolepsy to do competitive open water swims! I will be giving them a write-up for their next newsletter. Thanks also to the many, many people out there who have encouraged me or helped me get to where I am today!

    kejoyceflystormsevmorosemarymintBHillSoloSydneDsosophiaphia
  • MoCoMoCo Worcester, MAMember

    I never saw this originally, but wanted to give you huge congrats! I have sleep apnea that's (mostly) managed and my sister has hypersomnia (probably on her way to a narcolepsy diag), so I am in awe of your hard work and dedication to train for and complete that race!

    I've had to mostly arrange my life to work around my uselessness in the AM - I changed my work hours so that morning workouts don't have to start so early and even then most of the time I end up swimming at night. Luckily I don't have kids and my husband travels FT for work, so I have flexibility.

    curlysue
  • curlysuecurlysue McLean, VAMember

    Thank you MoCo! I truly appreciate your kind words. I also have sleep apnea, which was diagnosed about a year before narcolepsy. I’m so fortunate to have that well controlled through a CPAP machine, as not everyone is as fortunate. Also, best of luck to your sister in getting the right diagnosis for her sleep issues! Not a fun process by any means. Thank you again!

  • @curlysue said:
    Best update ever! On July 20, I completed the Ocean Games 9 mile race in Ocean City, MD!! The swimming part itself was easy-- the nausea from swallowing too much salt water at the beginning was what made the whole thing difficult... but I did it! My kayak pilot (yay Michele!) was amazing and with her help I accomplished my unassisted, completely legal swim :) I have now been exhausted for days due to my narcolepsy, but am so excited about the accomplishment. According to Narcolepsy Network, they think I might be the first person with narcolepsy to do competitive open water swims! I will be giving them a write-up for their next newsletter. Thanks also to the many, many people out there who have encouraged me or helped me get to where I am today!

    Well done! I lived near OC in HS, and spent many summer weekends there!
    What a fun event.

    How was the water?

    curlysue
  • curlysuecurlysue McLean, VAMember

    The water was colder than they anticipated— it was down to 64 two days before the race (surprisingly cold for there that time of year), but warmed up considerably by Saturday to maybe 69 or 70. It felt great considering that the air was about 99 degrees! Current and swells were with us for the first four hours, and then got choppy for the last hour that it took me. The good thing was that I could see all the hotels passing by so I knew I was making forward progression the entire time, thank goodness. Overall the waves were quite calm, too.

Sign In or Register to comment.