IAmA 31M with Kleine-Levin Syndrome (KLS) aka Sleeping Beauty Syndrome. I sometimes sleep for months at a time. AMA.
I am one of less than a thousand people in the world that have been diagnosed with Kleine-Levin Syndrome (KLS) aka Sleeping Beauty Syndrome.
I have “episodes” that last months at a time in which I sleep 16-20+ hours a day. During my awake hours, I am usually really out of it and confused. I am not able to do much other than go to to the bathroom, sit on the couch, and eat (though I can’t really prepare my own food.)
In addition to hypersomnia, other primary symptoms of KLS include hyperphagia (extreme hunger) and hypersexuality.
There is no known treatment or cure, but it does go away on its own, typically after 10-12 years.
More information can be found here: https://klsfoundation.org/what-is-kleine-levin-syndrome/
Proof: I’ve sent verification to the mods, but here is my letter of diagnosis from late 2013: https://i.imgur.com/FLmpRLe.jpg
EDIT @ 9:10pm CST: It seems like I've answered every question after about two hours. I'm going to take off for a bit and come back in an hour or two and see if there are any more. Thanks to everyone for their interest. Raising awareness about KLS and all the disorders on the hypersomnia spectrum was my goal with this AMA, and I'm glad I could reach as many people as I have.
EDIT @ 1:50am CST: I'm back! I woke up from a nap to see that I missed out on quite a bit -- sorry! I'll be catching up and hanging out for a bit longer.
EDIT @ 3:47am CST: Looks like I'm all caught back up again. I'm gonna go grab a bite to eat and NOT fall asleep and be back in an hour or so. Thanks for all of the continued interest!
EDIT @ 5:18am CST: Came back and saw I only missed a couple questions. Looks like things have died down. I really do appreciate all the interest and supportive words that have come through. I'm going to head off to bed for now, but please feel free to leave your questions throughout the day and I'll answer them when I hop back on tonight.
EDIT @ 11:31am CST: Oh. So this blew up. Hoooly cow. I'm back. Gonna get through these as fast as I can. Thank you so much everyone for stopping by and showing an interest!
EDIT @ 2:25pm CST: Okay, I've been answering questions for three straight hours. I'm not completely caught up but I definitely need a break. The interest and support in this thread is amazing to me. I might crash for a nap and be gone awhile... but I will definitely be back at some point today. Keep the questions coming. I'll try and answer them all. Thank you everyone!
EDIT @ 4:53am CST: I'm back! Gonna do my best to get through all these questions. We'll see how far I get. Thanks again everyone for your interest!
EDIT @ 6:24am CST: Okay. 36 hours, 1415 upvotes, 23.6k views, and 364 comments later... I think I'm done. There are a couple of questions directed towards my wife that I have sent her and am waiting for her to wake up to take a look at, but past that it seems like things have died down and I'm all caught up. I will still answer any questions that get posted here, but I think I can stop updating this top post. Thank you to EVERYONE for your interest. It was overwhelming and amazing and I'm SO glad I did this AMA. Thanks to everyone for their supportive and kind words. This has been a wonderful experience -- thanks for that.