HeroOfOne

My first episode (though we didn't know what it was at the time) was when I was in college. I think I've had to medically withdraw from 3+ semesters of school due to KLS, all with no real diagnosis. After giving up on completing school, I held down a few odd jobs here and there for a couple months, but inevitably had to leave them all due to my inability to work for months at a time.

I've since attempted a handful of on-demand jobs that I can pick up whenever I'm not in an episode, like driving for Uber. My wife and I almost moved to Las Vegas so I could play poker professionally as an income. Most recently I've tried Twitch streaming, just to try and generate some revenue.

I've been on a waiting list for a hearing for Social Security Disability Insurance for over two years now. If approved, I would at least have some income when I'm in an episode, which would provide some financial relief for my family. Then I'd be going back to getting a random retail job or whatever for a couple months when I was "awake."

The tough thing is that I'm a hyperextrovert and it will be tough to not disclose my disability, since it's such a big part of my life. But in reality, that's what I will have to do. I was a retail store manager for a few years before going to college so I can get pretty much any scrub retail job I apply for. So I'd apply, not disclose my disability (since I don't legally have to), and then tell them after a couple months that I think I'm falling into a KLS episode and likely won't be into work for a few months. Then they'll fire me and I'll start the process over again when I wake up.

Every one of my episodes is preceded by falling ill. Not every time do I get sick do I fall into an episode, but every time I fall into an episode it's after I was sick. So anytime I'm sick that gives a fair warning. But I typically have about two weeks when I first starting feeling out of it to get my "affairs in order". My wife and I clear my plans for the next several months, go over anything necessary that may come up in the next few months, spend time together, etc.

It's a similar time period of getting out of an episode. I usually have a good day and think things are wearing off, and then I'm fully out of it 2-3 weeks later.

Very, very often. My wife is really the only person (other than other KLSers I know from a Facebook group) that really gets it. I have some close friends that are understanding, but no one else really grasps what my life is like. It's one of the most frustrating parts about KLS. It's such a rare disorder that no one has ever heard of it (raising awareness is my main goal for doing this AMA), so you instead have to describe the symptoms. People just don't understand when I say I can't wake up and that I sleep so much that I CAN'T wake up and I HAVE to sleep so much.

I had to medically withdraw from several semesters of college due to KLS, and I had the VP of Academic Affairs pull me into a meeting saying that she wouldn't grant me anymore because medical withdraws are for students who get into car accidents -- not students who can't get themselves out of bed. (Once I got my diagnosis years later, I submitted an appeal and got to have several of my semesters I wasn't granted a withdraw taken care of.)

My in-laws, bless their hearts, REALLY don't get it despite me dealing with it almost the entirety of my relationship with their daughter. I always have someone in that family telling me I should just try and be more active, because once you're more active you feel better and will need less sleep.

I've lost friends because I'm basically MIA for half the year and while most are understanding, some just don't get it and don't want to deal with me since they perceive me as not being a good and active friend.

It's incredibly frustrating, but also to some level understandable. Hence, my aim is to raise awareness about KLS and all of the disorders on the hypersomnia spectrum. The more awareness there is, the better it is for all sufferers.

No need to apologize, I'm doing this AMA to try and gain some exposure for KLS as a whole... sharing my personal experience is something I want to do.

My then girlfriend, now wife, was with me when I had my first episode in college in early 2010. We had no idea what was going on. I was missing all my classes and was sleeping for 22+ hours a day. She would come over to my place every Monday, Wednesday, and Friday and get me out of bed, walk me down the stairs, make me something to eat, and then put me back to sleep while she worked on her homework with my roommates. This was less than a year into our relationship and I still have no idea how she stuck with me. But I'm eternally grateful she did.

We did not have a diagnosis of KLS yet when we got married a couple years later, but she still claims she knew what she was signing up for when we got married because we both knew something was up that I'd sleep for months at a time.

When we got the diagnosis, both of our reactions were immense relief. It's incredibly frustrating to have no one believe you when you say "I can't do x because I can't wake up." Being able to put a name to my symptoms and finally have a legitimate reason to tell people why I was asleep so much made life relatively easier. Though, in reality, she is really the only other person that "gets it." My mother, her family, my friends, etc... still struggle with the concept and don't really understand why I can't do x. It's frustrating, but because I have her (and a Facebook group for fellow KLSers), I'm able to cope.

She basically plays the role of wife the entire year, but adds in the caretaker role for the other half. She loves me and knows I'd do the same for her, but I'd be lying if I said the guilt didn't eat away at me all the time. We are both looking forward to the time when I'm back to being a normal person and can carry (at least) half the load again.

Yes. Most folks' immediate (and hurtful) reaction is JEALOUSY. They say "oh man, I'd LOVE to sleep that much."

The media calls KLS "Sleeping Beauty Syndrome" and we all hate it. The only reason I put it in my title is that some folks may recognize it as that.

It's an awful, life-stealing disorder with no treatment or cure and people who don't get it always say they'd love to have it because yay sleep.

I'll paste my answer to a similar question about the Rip Van Winkle scenarios:

All but two of my episodes have been 2-3 months except for two. I recently had an episode that lasted a little over 4 months. And a few years ago, I had a 10 month long episode.

The longer my episodes are, the more mild they are. So even though it was a 10 month long episode, I was sleeping for more like 14-16 hours a day instead of 20+. I had more lucid hours then as well, though still don't really recall much from that time.

The best way I can describe it is that if someone were to ask me about something I did while in an episode, I can't really go back into my memory and think about the experience. However, if someone tells me something that happened, it usually clicks and while I still can't really remember being there or having the experience, I can confirm that I know it happened.

So the biggest changes I notice are after my shorter episodes since those are the ones where I am actually out of it for 20-22+ hours a day and likely only have lucid hours a couple times a week.

Biggest changes for me are how sports teams have progressed, as I'm a relatively big sports fan. I miss plenty of political news cycles which is frustrating as I'm a political buff. Changes in friends' and family members appearance is usually the more striking stuff. Like someone gains or loses weight, or gets a completely different haircut or something of the sort -- they just all of a sudden look relatively different to me as opposed to not noticing the change since it happens over time.

As far as hypersexuality goes, I'm not the best authority on it. Hypersexuality only impacts about a third of people that have KLS, and I don't fully think I'm one of them. My sex drive is admittedly always relatively high, so it's also possible I just don't notice it. However, there has definitely been at least one episode I've had where I think I was affected by it.

The way I describe KLS in laymen's terms is that it's like I'm never fully satisfied. I can never get enough sleep, I can never get enough food, and in the case of hypersexuality -- I can never get enough sexual relief. Always tired, always hungry, always horny.

That being said, I repeat that I generally don't notice much of an effect of hypersexuality, so I don't really think I get this symptom. I shared that I was doing this AMA to my KLS Facebook group, so perhaps one of them will be able to chime in.