IAmA 31M with Kleine-Levin Syndrome (KLS) aka Sleeping Beauty Syndrome. I sometimes sleep for months at a time. AMA.

How do you deal with employment when you may not be able to leave the house for months at a time?

How much warning do you have when an episode starts?

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.

Sounds like a strange existence. Thanks for doing the AMA. Hopefully you can get to "normal" soon.

I appreciate that!

My disability hearing took exactly 4 years before I got before a judge (and was approved in less than 5 minutes) so don’t give up, it will happen!

My attorney believes it'll be a coinflip based on the judge we get. But we won't know that until 30 days before the hearing. It's tough since I'm so young and KLS is so unheard of -- but I'm holding out hope. I'm glad things worked out for you!

It's probably because of the backlog and also all the people who emergency situations. I got mine in about 3 months but I had a very dire situation.

Yeah. The backlog is ridiculous. When I first filed for a hearing the wait was 430+ days, which would have put me to have my hearing last month. Now the latest guess from my attorney is around August. Blegh.

What is your twich channel?

Same as reddit -- http://twitch.tv/heroofone

I haven't streamed in about a month due to my wife and I buying our first house and dealing with the move, but I hope to get back to it before the end of February. It's something I really enjoyed doing, and while I'm ages away from generating a real income with it -- having people to chat with every day and at least feel like I'm being active and productive has been really nice.

Seems like you would benefit from a job with a strong long term disability program. I would take a look at some of the options. Where I work, we have a ton of programs that make things work for all sorts of individuals, including FMLA, short term FMLA, intermittent disability, long term disability, etc. all you would need is to be clear for a 3 month period to get through training, then a note from a doctor saying you cannot work due to medical reasons. You would likely start with entry level work, but it’s better than nothing, and could at least provide a bit of stability and benefit structure for your family. We actually have a VERY aggressive policy for hiring folks with disabilities. We sort of pride ourselves on being industry leaders in the whole “inclusiveness” thing. PM me if you want to talk about it.

I appreciate that very much. I'll definitely send you a message once this thread dies down.

I've thought about trying to take advantage of a long term disability program, but I always thought getting hired and putting in the time needed to qualify would be next to impossible.

What is your twitch handle?

Same as reddit -- http://twitch.tv/heroofone I haven't streamed in about a month due to my wife and I buying our first house and dealing with the move, but I hope to get back to it before the end of February. It's something I really enjoyed doing, and while I'm ages away from generating a real income with it -- having people to chat with every day and at least feel like I'm being active and productive has been really nice.

How often do you get comments like "oh you're just being lazy" ?

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.

People seriously imply that you might sleep that much on purpose? As if that's actually possible for a healthy person to do? I mean, I slept 20 hours in one go a single time in my life and I had such a massive headache after I woke up, my body sure as hell wouldn't put up with doing that more than one day at a time... I'm sorry to hear you have to deal with that kind of stupid!

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 work night shift amd have worked a fsr to many days where I'm awake for 30+hours, generally after that ill sleep for about 12-16 hours and it seriously is ruinous, i cant even fathom what you go through with that,

I also have a few questions!!!

Are you able to be woken up or are you totally comatose? Do you have an emergency plan for things like fires/life changing eventsetc?? Do you experience serious weight fluctuation???

I'm able to be woken up, but I'm basically completely worthless as a human being unless I wake up on my own. Alarms don't work -- it takes shaking and my wife literally pulling me out of bed.

We don't really have a plan in place for emergencies so to speak, as I always have been wake-able to some extent. Though -- admittedly, that may be something worth thinking about.

Someone asked in another thread about how I handle adrenaline inducing moments like emergencies. I do have some ability to "snap into it" and basically become lucid to deal with a situation... then I "let go" and crash. I recalled a time that I foolishly let my dog outside in our backyard to go to the bathroom and he managed to hop the fence. I called my wife home from work, my mother who lived nearby, and helped manage the search for him. As soon as he returned, I looked at my mother and said something like "so I can let go now?" and just lost it and crashed immediately. I imagine that if a fire or something similar happened, the same thing would happen. Or at least I hope it would.

I've answered about my weight fluctuation in another question... which I'll paste here:

But yes, my weight has been a struggle.

I was always a bigger dude. A product of having two obese parents who never taught me proper nutritional habits. However, once I got to college, i actually lost a ton of weight and was the smallest I had ever been. This continued for about a year until my first episode hit in early 2010.

Ever since I've had episodes, my weight has continuously increased to a dangerous level.

It makes sense to some extent... that I spend half the year eating an outrageous amount of food and laying on my back 23+ hours a day.

I work hard to try and undo some of the damage I did when I wake up, but it's never enough. I just keep gaining and gaining.

Near the end of 2016, I found out about DDP Yoga and figured that since a lot of it was geared towards rehab, it was something that even I could try doing. I wound up losing 175lbs in less than a year. A feat I'm super proud of. I had one episode during that time, but it was pretty mild so I was able to stick to the nutritional plan for the most part -- just eating a LOT more veggies.

Then late last year, I wound up having a really rough episode in which my wife told me I would cry to her saying I felt like I would die if I didn't get a McDonald's cheeseburger. I gained a decent chunk of that weight back. However, I'm hoping to start back up on DDPY early next month and since I'm still a decent ways down from where I started, I'm excited about the progress I should be making.

I have an appetite suppressant that I take when I'm in an episode and while it helps to some extent with the overall hunger, it doesn't do anything for cravings. And unless I get a craving satisfied, I'm basically miserable.

They say "oh man, I'd LOVE to sleep that much."

Oh man. I can't relate to what you're going through, but a side-effect of the medication and depression-related condition I have is sleepiness, sometimes intense sleepiness. The other day I got a call from HR, and it woke me up around 9 AM when I had to be off work medically. The guy joked that he wished he could sleep in that long.

Bloody hell. As if I want to be sleeping at 9 AM instead of at work.

But yeah, I can relate somewhat to the way people react to this sort of thing. But my thing is occassional--I'm sorry you have to go through that so much, and from people who should know better! It really does sound life-stealing.

It sounds really freakin' tough. I hope you're near the stage where it eases off (does that happen for everyone who has it?). Wish you the best.

Thanks for this. As shitty as it sounds, it's at least nice to know that there are more people out there who know what's up.

I think people struggle with thinking of sleep as a symptom. They definitely don't mean to be insensitive -- but it's hella frustrating.

This makes me really sad and reminds me of someone telling a person with depression they just need to go for more runs or something. I can't imagine telling a friend that I "can't deal with them" because they have a disorder. I'm really happy your wife is super supportive, and you have people in your life that are understanding. It sucks that not everyone can be, though.

Anyway, I hope one day soon you'll wake up from your last episode.

Thank you! It's tough for me to blame them because I have the "benefit" of knowing what my life is like. If the roles were reversed, I'd like to think that I'd be understanding and supportive, but I can't say that with certainty since I have the information I have.

just try and be more active,

That's the current medical advice for everything, it seems. Trouble falling asleep? Exercise more! Trouble keeping awake? Exercise more! Overweight? Exercise more? Underweight? Exercise more! Over-exertion? Exercise more.

It's the 21st century version of bloodletting.

To be fair, it's not awful advice. Almost anyone could benefit from being more active as a whole...

But unsolicited medical advice is always frustrating. Especially people with no medical background telling you that the fix for a neurological disorder that countless scientists have found no treatment for is just "why don't you get out for a walk every day, that will do it!"

All I have is depression and ADD but I definitely understand what it's like to be told to "just do" something you aren't capable of doing, with the very clear assumption that you could if you cared/tried harder/tried x or y. we all choose to have our conditions. Because they're so fun, Y'know. I definitely hear that. Glad you have someone who gets it, that's huge. Make sure you tell her how much that means often enough.

I get it. The conversation is finally making progress on educating people about mental illness and non-physical disabilities. Someone's in a wheel chair and people immediately accept they can't walk. Someone says they can't do X and people just don't understand why since they can't SEE why.

It's getting better. But it's not good enough.

I have diagnosed idiopathic hypersomnia and while it is nowhere as disrupting as KLS I can empathize. Thanks for doing this AMA and best of luck!

Idiopathic hypersomnia was the first guess my neurologist had. They're relatively similar, so I get it. Thanks for stopping in. My goal with all of this is to raise awareness about KLS and all the disorders on the hypersomnia spectrum. I figure the more information that is out there... the better it is for all of us.

This hits home for me because a lot of people think the same about sleep apnea (it's laziness)... including my former dean of academic affairs who thought I was an alcoholic and had zero sympathy for me.

Oof. I hear that.

My VP of Academic Affairs took me into her office and explained to me that they wouldn't be granting me another medical withdraw because medical withdraws are for students who get in a car accident, not for students that can't get themselves out of bed to come to class.

Once I had an actual diagnosis, I went back years later and appealed and got it all sorted out -- but the frustration at the time was truly infuriating.

That sounds rough, hopefully you won't haft to deal with this for much longer!

Thank you!

Do you experience Rip Van Winkle scenarios where you're surprised by how much and what has happened while you were asleep? What did you miss and how did you react to the changes?

Also, can you clarify on hypersexuality? How does it manifest in your case and in others?

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.

Do you ever experience "sexomnia"?

Nope. Or at least, not to my knowledge. I imagine my wife would have told me about it though if something ever like that ever happened.

Wow, to start off with, you are incredible and I truly hope that you outgrow(?) this soon.

How do you think you will adjust to the change once it goes away? Are there special therapists that specialize in transitioning you emotionally, mentally, and physically into a regular life and sleeping habits once the ten years passes and it hopefully fades?

Thank you! The best thing that can happen is for me to realize one day that it's been over a year since I've had an episode and can start getting back to my life.

The hardest part about KLS for me is how it impacts my life when I'm not in an episode. I can't really hold down a job, I've been 16 credits away from graduating college for 5+ years, and I've lost touch with so many friends by not being asleep half the year. So to be honest, I haven't really thought of how "hard" it will be to get back to normal life, as it all seems like positive stuff.

However, I can imagine I will have quite the adjustment with things suddenly being expected of me again. Like, I have little to no responsibility right now since I'm asleep half the year. My wife handles all the financials, I can never commit to anything 1-2+ months out, etc. I imagine that aspect of it will be pretty stressful.

I can't imagine, you are so strong and so is your wife. I'm so glad she sounds so loving and supportive of you. Whenever you (hopefully soon) find that you are no longer having episodes, I would consider looking into therapy if you're not in it. Just to help you collect your emotions and such. Also I assume physical therapy for muscular atrophy could be a huge help but maybe you're already in physical therapy. But you and your wife have come so far through this. Everything you overcome and work through sounds so difficult but you guys are still working together as a team. I believe in you. I know you'll finish college at your own rate or when you stop having episodes, you have so much to be proud of and you'll have so many more things to be proud of in the future!

Hey. You don't know me and I don't know you, but thanks for this. It's an incredibly frustrating and lonely life, and knowing that there are people out there that are understanding is very inspiring.

Your life sounds difficult but it's very curious to me. Sleeping that long sounds like having a bad acid trip. I wonder if taking psychedelics while in an episode would have any effect on your sleep. Psychedelics, LSD particularly, are known to keep people always for 24 hours.

I live in Minnesota, where marijuana isn't legalized yet. I have dreams of a political career some day, so I've avoided illegal drugs, but there is talk that using marijuana at least has some positive effect on people with hypersomnia. I look forward to being able to experiment with this in the future.

As far as other drugs go... I think that's something I'll be avoiding -- unless some research goes into it first.

So this isn't intended as an ad or anything, but could you use the open university to get those last credits on your own schedule? They're fully accredited in the UK and accept international students, but their whole thing is studying remotely for people who can't do full time student

Thanks for this -- I'll look into it. My currently plan is to save up enough money by working oddjobs to pay off my old school that I owe $6k still. Once I pay them off, I can get my transcript and transfer to a school that offers an online PoliSci program to do my last semester/year.

I've been looking at the University of Maine.

The idea is that even if I'm in an episode and only awake for a couple of hours a day, I can use that time to do schoolwork. Whereas going to traditional school never worked when I was in an episode because I have to wake up on my own naturally and not at a scheduled time.

If you sleep for months at a time is there a potential for muscular atrophy that could severely limit your mobility?

I shared this with the KLS Facebook community I'm a part of, so perhaps one of them will chime in with a different answer, but no... this is not something I have experienced.

I still get out of bed every day, use the restroom, go up and down the stairs to my "KLS Oasis" I have downstairs (a man cave, essentially where I can lock our dogs out since they don't understand why I can't hang out with them), etc.

I can't really do much real physical exertion as there is definitely some detriment to laying down 20+ hours a day for months at a time. It usually takes me a few weeks to a month to get back to a normal level of activity after an episode. But AFAIK, muscular atrophy isn't an issue with KLSers.

Do you dream in extended sleep?

My dreams are actually an indicator for me falling into an episode. When I'm nearing an episode, I almost always have really weird and crazy dreams. I THINK this continues on to when I'm actually in an episode, but I don't know for sure since my memory when I'm in an episode is so awful. I'll ask my wife if she recalls me talking about weird and crazy dreams while in an episode and edit this post with an answer.

EDIT: From my wife -- "Well, you talk in sentences that don't make sense - like you are still in a dream but telling me how you need to "bring something somewhere" but you don't usually tell me your dreams in an episode"

Have you tried keeping a dream journal? Or are you too out of it when you're in an episode?

I have not. I don't know if it would be helpful in any way, but it'd likely prove to be entertaining.

Do the sentences not make sense contextually or grammatically?

Contextually. Like I talk like I'm in my dream, basically. I'll say things like "I need to put the tent away so we can go camping" or something else random.

Do you have any memory issues? I know disorders that effect sleep often also effect memory.

Yes, I definitely do. There is not much I remember during when I'm in an episode. Though my memory when I'm not in an episode is fine.

Even though I'm awake for a few hours every day when I'm in an episode, I don't really know what's going on most of the time. Sometimes I have lucid hours, but even then I usually don't remember what happened.

For example, one of the few "activities" I can do when in an episode is just sit and watch Netflix. However, I can't really watch any non-episodic/procedural shows. So stuff like House of Cards or Game of Thrones where it's all "this is a show that has one continuous story arc" is impossible for me to follow because I likely won't remember what happened the episode prior. Instead, I'm stuck watching mostly cop shows where there's very minimal overall story arc, and every episode is its own story.

This is one of the hardest things for my girlfriend (still working on securing her official diagnosis). During an episode, her mental capacity and her memory are so terrible that doctors don't take her seriously. They think that she's faking or just being difficult. She's been through a bunch of doctors, and even the neurologist that she was referred to wouldn't take her seriously.

When she's not having an episode they don't believe that anything is wrong, and when she is she doesn't have the capacity to properly express what she's experiencing. It's incredibly frustrating.

Fuck. That sounds awful. I hope she's aware of the KLS Foundation -- http://klsfoundation.org -- I think that they have a list of neurologists that have firsthand experience with diagnosing KLS.

How did your family react/cope with this? Sorry if it’s personal just curious.

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.

Sound like a great person! Hope your recovery is as short as possible!

Thank you!

Your wife sounds like a wonderful person. I know I'm exaggerating a bit when I say this but it gives me hope in humanity.

She is. As unlucky as I am to have KLS, I make it up in spades with how lucky I am to have her in my life. :)

How long have you been diagnosed/had this problem? You said it typically goes away after a decade or so yes?

Also one more question do you often get bed sores?

My first "episode", though we didn't know what it was at the time, was in early 2010 when I was in college.

I didn't get a diagnosis until nearly four years later, at the end of 2013.

It's an incredibly hard thing to diagnose since there is no way to test for it. Instead, it's diagnosis by process of elimination. They test for everything else, and if it's not any of those things, then it must be KLS.

It does "typically" go away on its own after 10-12 years, yes. So in theory I am past the halfway point. Though, I'm in a Facebook group for other KLS sufferers and some folks report having it 20+ years. With anything this rare, it's hard for there to be a full understand of what is "typical."

To my knowledge, I haven't experienced an issue with bed sores. Though, since I rarely remember anything that happens when I'm in an episode, it's possible that I have had a couple and just forgotten.

Although you are done answering questions for the night, I scrolled through the whole thing and didn't see this asked. Maybe you can't answer, but those in your community can?

What happens if during an episode something awful happens? A close family member dies. Or your house burns down. A hurricane hits and burries your city. You get the idea ( Someone is there to get you out). Does adrenaline kick in and help in that situation? You said you can take Adderall to at least show up to a function. Does your natural adrenaline kick in and wake you in the event of a disaster?

This is a great question. And while I haven't really experienced anything as awful as you describe, perhaps someone from the KLS Facebook group I invited here can chime in.

I have experienced some things like this, however. And there is definitely some adrenaline that kicks in at certain times that I can put any and all energy into to keep up. For example, I foolishly let my dog out to go to the bathroom in the backyard once and he wound up jumping over the fence. I called my wife home from work, I called my mother who lived nearby, etc. I was in NO state to go outside and wander around looking for him. But I was able to remain calm and focused enough to come up with a plan to find him and all that. Once my mother found him on a street over and he was brought back home, I looked at her and said something to the extent of "OK, so can I be done now?" And then I crashed immediately.

This has happened several times. Not necessarily with tragedy, but where (as the planner of the family) I have to do everything to keep my wits in check and focus really hard on something, and once the task is complete I basically say I'm going to "let go" and then crash immediately.

I can't really describe it better than that, but I hope you get the gist.

What’s the longest you’ve slept and what was the biggest change you noticed when you woke up?

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.

How have these episodes affected your personal relationships?

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.

She's basically the only person that "gets it" and has a full understanding of what life is like and all that. The guilt of her being my caretaker half the year eats away at me, but I know that one day when I permanently wake up I'll do everything I can to repay her in full.

My relationships with all my friends suffer. I basically fall of the face of the earth for 2-3 months twice a year. So half the year I'm MIA. It's tough to really maintain strong friendships.

That being said, I have three incredibly close friends who have been there for me every step of the way, so there's that.

I know I've actually lost friends due to KLS. Being told that they just don't get it and that it's too hard for them to deal with. It is what it is, and while I can't blame them, I also think it's kinda shitty. But hey -- I've learned who my true friends are.

My in-laws REALLY don't understand it, despite my wife and I trying to explain it to them for forever and having us deal with it for 8+ years. It sucks because I worry they think I'm not good enough for their daughter, etc.

I know it may sound ridiculous, but one of the hardest parts about having KLS is that no one has ever heard of it. Like... if you say you have [insert well known disease/disorder/etc here], then everyone understands what's going on with you and accepts whatever it is you tell them you need. But with such an incredibly rare disorder, you have to explain it over and over again and people still struggle understanding it.

Almost completely irrelevant but perhaps some consolation is when you have a really well known disease/disorder you can have opposite problem. Problems like Depression and OCD suffer from it where people assume they know all about the problem, you see it frequently with depression with the whole "just be happy" things, and with OCD people have such a distorted view of what it is they expect you to behave in certain ways or will not believe you when you say you have it because you don't fit their criteria.

That makes sense, I guess. I never really thought about that. The grass is always greener, I suppose. Thanks for this.

Sometimes the fact that people have heard of a disorder makes it harder. I have Tourettes, but I don't fit into the swearing stereotype (it's pretty uncommon for people with Tourettes to have coprolalia). That said, I imagine it'd be difficult explaining my twitching and noise making without being able to tie it to something people have heard of.

My point is, even if everyone had heard of KLS, I'm sure they'd have a bunch of annoying misconceptions ("Oh that's the sleep fucking disease, right?") that would be just as difficult to deal with as people not having heard of it at all.

Thanks for sharing this. That's completely fair. I've never thought about the potential downside to people at least recognizing KLS, despite not really knowing anything about it.

Does waking up after a month feel refreshing?

Not really. "Waking up" is usually about a 2-3 week process. It usually starts with having a good day which gets me really excited, but then I get brought back down to earth with having shitty days where I'm completely useless again. Waking up is one of the most frustrating parts about KLS because I always think I'm finally awake and can be a normal person again... only to go back to sleep for a day and a half.

So by the time I finally actually am fully awake, I'm pretty numb and cautious to the feeling and then life eventually just picks back up as normal.

Do you have depression, anxiety or any other mental health issues?

Yes, I've been diagnosed with depression and anxiety. I'm sure it started earlier, but I didn't really have issues until I applied for Social Security Disability Insurance a couple years ago. Taking that step -- essentially "giving up" on any semblance of a normal life until I was over KLS, was really hard on me. I was suicidal for a decent amount of time, but I got the help I needed.

I still see a therapist regularly, and my hearing for SSDI is just around the corner. I'm hopeful that whatever the result of the hearing, I'll be at peace and have some way of generating income and feeling like I have some kind of life.

How many doctors did you have to go through before you got your diagnosis?

Luckily for me, my 2.5+ year journey towards a diagnosis was actually pretty simple compared to other KLSers I know.

I first went to health services at my college and they were idiots. I mean, I guess I was an idiot for going to college health services for something other than a cold or sprained ankle. They told me I had a vitamin d deficiency and THAT'S why I was sleeping 20+ hours a day. They prescribed me vitamin d supplements and sent me on my way. I went to school in Duluth, MN... EVERYONE has a vitamin d deficiency lol.

When I moved back to the Twin Cities (Minneapolis metro area) after giving up on finishing school, I found a primary care doctor that had me go through every test in the book to diagnose some other stuff I had going on (learned that I had acid reflux and asthma). But when it came to the sleep stuff, he referred me to a neurologist who specialized in sleep issues.

I met my neurologist and told her about my sleeping, and on a whim thought to mention how I also felt really hungry when I was in one of these "sleeping spells." She then went on another line of questioning, and eventually told me that strangely enough, it sounded a lot like something called Kleine-Levin Syndrome... but that'd be next to impossible since she has already diagnosed one person in her life with KLS and the odds of running into a second are near impossible.

It took 2.5 years but I eventually got my diagnosis from that neurologist.

So technically it took seeing three different people before someone mentioned it and started m me on my journey for diagnosis... but I was very lucky in the sense that the first specialist I saw put me on that path right away.

have there ever been any growth issues because of said sickness?

Sorry for not understanding -- do you mean like lumps/moles/etc?

If so, no, I haven't experienced anything like that.

EDIT: I apparently misunderstood the question. No, my growth hasn't stunted or anything. I'm 5'10".

I think they meant like you're an average-sized adult male.

Yeah thats what they meant. IOW, how tall are you, Op?

He's had KLS since 2010, which means he was something like 23 when it started; there's no reason for it to affect his growth, I think.

Yup -- you've got it right.

KLS typically affects teens and younger adults, so perhaps there may be something to that... but I've never heard about it from anyone in the KLS Facebook group I'm a part of.

Can you honestly wake up from an episode as in can you be shaken?

I am completely and utterly useless when I'm in an episode if I don't wake up on my own. If and when I wake up naturally, that usually leads to my most lucid hours. Alarms definitely don't work, but shaking me awake does, to an extent. I basically am a zombie being led around by my wife and just following her direction as best as possible.

I have an adderall prescription that I can take to force myself awake, but it's really just forcing me conscious. It allows me to be present at a social function (like a friend's wedding), but I won't remember anything that happened.

Is it a genetic disorder?

As far as anyone knows, it is not.

Since KLS is so rare, not life threatening, and goes away on its own eventually... there is little to no research being done on it.

There's no way to test for it (only way to be diagnosed is by process of elimination), and currently no genetic link.

We're at the point that KLSers send in blood samples to a research lab at Stanford I think just to get some on file... but really... there's not much being done.

Interesting! Thanks for replying! One more question; do the doctors know what triggered it for you and what triggers it to go away?

There are known triggers for falling into an episode. The most common ones are getting over an illness, a blow to the head, or drinking alcohol. My trigger is getting over an illness. Every KLS episode I've had has followed me being sick. Though, not every time I'm sick do I fall into an episode. Getting out of an episode doesn't have a trigger, it's just time. For some KLSers it's months like me, others have episodes that only last days or weeks.

As far as KLS overall having a trigger... there is no known cause. Nor is there any thought process on what causes KLS to end, other than the time period of 10-12 years.

Why was Torno so suspicious of me when I showed up?

<3 Jorgals

Haha! Hello my D&D friend.

Because Torno was a straight edge Monk and Jorgals was a loud drunk. <3

That makes sense. But as a serious question when you are waking up from an episode what is your ideal environment? Do you enjoy going out for social activities, spending quality time with your wife?

I'm a hyperextrovert, so my main goal when I'm awake is to spend as much time with as many friends as possible. This isn't always easy as keeping friends is tough as I fall off the face of the earth for months at a time. But I really do everything I can to be as socially active as possible. I'm a big planner and love planning events, setting up regular weekly nights like D&D or poker, etc.

Time with my wife is also incredibly important, as she's not so much my wife but my caretaker for half the year. She's quite the introvert though, so I really have to balance my time between keeping an active social schedule and just chilling with her and the dogs.

I imagine juggling your time is difficult as you don't know how much time you have between episodes. But from what I have read your wife sounds awesome and amazingly supportive. I wish you the best managing this. If you need an extra hand with anything that comes up let me know.

Thanks for this. I do the best I can and surround myself with as many people that are supportive and can handle a friend that's only around half the time.

You likely remember me trying to play D&D when an episode was coming on and how out of it I was and all that. Not super fun to hang out with -- so I try and do as much fun stuff with friends as I can when I'm actually awake. The tough part is keeping those relationships solid.

I appreciate the kind words man! <3

During your episodes, does your sleeping still occur in consistent (albeit elongated) cycles? Or is it very sporadic, where you find yourself up at 3am?

It's definitely sporadic. I have no semblance of a "sleeping schedule" when I'm in a KLS episode. Sometimes I'm awake for a couple hours in the afternoon, and two days later my lucid hours might be in the middle of the night.

What’s the start of an episode like? You mentioned you’re sick, but do you know when you go to sleep at night “this is a big one” or does it only process when you “wake up” two seasons later?

Perhaps a bit too personal but... how does not going to the restroom for 20 hours work? Or does it not work...

It's not necessarily that I'm sick, but I'm getting over being sick. Usually, I don't start feeling the signs of an episode for over a week until after I was sick. Every time I've had an episode it was after I was sick, but not every time do I get sick do I fall into an episode.

One big indicator for me is my dreams. I usually have some craaaaazy and vivid dreams right before an episode. My wife will also point out my speech pattern is changing and I seem just more out of it in general. My vocabulary as a whole takes a tumble when I'm in an episode, so that beings relatively early on. The best way I've been able to describe it is that my thoughts are locked in my head and it's reeeeaaally hard to get them from my head to my mouth. Just my communication skills as a whole take a huge plummet.

So there are signs, and I usually have about two weeks from the first sign of an episode coming until I'm fully in it where I can get my affairs in order for the next several months.

And no -- nothing is too personal. I'm doing this AMA to raise awareness about KLS and all the disorders on the hypersomnia spectrum, so don't worry about it. I don't tend to sleep for 20 hours straight. It's more like I sleep for 8-10+, then wake up and use the rest room, eat something, go to the couch, and then crash for another 8-10+, etc. Sometimes it's a lot of little naps throughout the day, sleeping four separate times for 4+ hours, etc.

I eat a TON when I'm in an episode due to the hyperphagia aspect of it. Even though I'm only awake for a few hours a day, I usually eat something like 4-5+ meals worth of food in that time. So I definitely spend plenty of time in the bathroom. Sometimes having to go to the bathroom is what wakes me up. But I've never had an incident where I wet the bed or anything like that because I couldn't wake up.

Hi! Sorry I'm a bit late to the party. My question is: Have you ever had an EEG or MRI or some type of brain scan or even lab work done while you are in the middle of an episode? If so, were there any differences between the scans from during an episode and your "awake" scans?

I read an article a while back about a kid that has KLS and it really intrigued me from a medical standpoint. What I learned from you is that most people with KLS "grow out of it". That really reassuring and hopeful. Thanks for doing this ama. I hope you grow out of KLS soon.

Also, your wife sounds like an amazing human being. We could use more people like her in the world.

Edit: formatting

No worries -- the most questions the merrier!

I did a CAT scan once in the diagnosis process, but it was not when I was in an episode. I must be honest in saying I don't know if this has ever really been done, but if someone from the KLS Foundation stops by I'm sure they can answer that for you.

In all actuality, since KLS is so rare, not life threatening, and goes away eventually -- there's very little research being done into it. We're at the point where anyone with KLS is encouraged to send a blood sample into a Standford research team.

Here's a link to the KLS Foundation's info about all the research being done: https://klsfoundation.org/category/kls-research/

People are "supposed" to grow out of KLS in 10-12 years, but there are some people in my KLS Facebook group that report having KLS for 20+ years. It's tough with something so rare to expect anything "typical". Regardless, I appreciate your well wishes.

I've known forever that my wife is one in a million and, despite my medical issues, am an incredibly lucky guy just to have her in my life. I'm glad that complete strangers can recognize this as well. :)

I hope in 6 months you add another "edit: back! awesome nap!"

Seriously though, this is fascinating. Can you feel when an episode is coming on or does it just "surprise" you?

Haha, I spend a decent amount of time on reddit when I'm in an episode, so I don't think I'd ever stray away that long.

My trigger for an episode is falling ill. I've mentioned this in a few other answers, but there are common triggers for episodes. Getting over a sickness, taking a blow to the head, or drinking alcohol. Every episode I've ever had follows me being sick. Now, not every time do I fall sick do I fall into an episode... but the fear is always there. So I'm hypervigilant about avoiding germs and all that.

As far as feeling when an episode comes on... yes. There are telltale signs. My dreams get crazy, my communication skills suffer, and I fall into dazes somewhat regularly. I usually have about two weeks of these signs before falling fully in, which is enough time to get my affairs in order and clear my schedule for the next several months.

I'm glad you find this interesting. My goal with doing this AMA was to raise awareness of KLS and all the other disorders on the hypersomnia spectrum. The more knowledge that is out there -- the better.

I usually have about two weeks of these signs before falling fully in, which is enough time to get my affairs in order and clear my schedule for the next several months.

This is the part thats craziest to me. Knowing its going to happen and then planning around it.

What does your wife do during the times you're just sleeping away?

I sent this question directly to her. Here's her response:

"work, catch up on cleaning or food prep, rest, hang with the pups"

I hope this isn’t indelicate, but do you suffer with weight fluctuations? (Very intrigued by this thread. Signed up just to comment.. New to here).

No worries -- I'm an open book about everything with this. Sharing my personal experiences (no matter how embarrassing they may be) is the only real way I can raise awareness about KLS and all of the disorders on the hypersomnia spectrum.

But yes, my weight has been a struggle.

I was always a bigger dude. A product of having two obese parents who never taught me proper nutritional habits. However, once I got to college, i actually lost a ton of weight and was the smallest I had ever been. This continued for about a year until my first episode hit in early 2010.

Ever since I've had episodes, my weight has continuously increased to a dangerous level.

It makes sense to some extent... that I spend half the year eating an outrageous amount of food and laying on my back 23+ hours a day.

I work hard to try and undo some of the damage I did when I wake up, but it's never enough. I just keep gaining and gaining.

Near the end of 2016, I found out about DDP Yoga and figured that since a lot of it was geared towards rehab, it was something that even I could try doing. I wound up losing 175lbs in less than a year. A feat I'm super proud of. I had one episode during that time, but it was pretty mild so I was able to stick to the nutritional plan for the most part -- just eating a LOT more veggies.

Then late last year, I wound up having a really rough episode in which my wife told me I would cry to her saying I felt like I would die if I didn't get a McDonald's cheeseburger. I gained a decent chunk of that weight back. However, I'm hoping to start back up on DDPY early next month and since I'm still a decent ways down from where I started, I'm excited about the progress I should be making.

I have an appetite suppressant that I take when I'm in an episode and while it helps to some extent with the overall hunger, it doesn't do anything for cravings. And unless I get a craving satisfied, I'm basically miserable.

I'm honored to hear you signed up for reddit just because of this thread. My goal with this AMA was to raise awareness of KLS and all the disorders on the hypersomnia spectrum, so it means a lot that you've taken an interest!

Wow! Thanks for replying! I can only imagine that KLS really messes with your caloric needs. You should be super proud of taking the reins and branching into yoga! (I keep telling myself this’ll be the year I do that!).

Thanks for that.

Since taking my first steps into getting my health under control (or as much under control as I feasibly can), my motto has been that "any day can be your day 1."

Often we make plans for the perfect scenario to get started and never find the time. So, /u/APSmudgeheimer, why not start Thursday?

Do you want kids? What about your wife?

If yes would you ever consider having them before you are (for lack of a better word) cured?

Would you want to have genetically related (to you) kids or would you go with a sperm donor, adoption? (Since you mentioned earlier that we don’t know if this is a enetic disorder or not)

When we first got together, and even through the first couple years of our marriage, my wife and I definitely wanted children. The ongoing "argument" was if we wanted two or three.

Then, once we got my diagnosis of KLS, the conversation changed a bit. We decided it would be incredibly irresponsible to have children while I still had KLS because I can't even take care of myself (or our dogs) half the year, nevertheless children. We pledged to have the conversation once I fully woke up and decide if we were still young enough to have kids, or perhaps if we wanted to adopt, etc.

However, over the last several years, and more and more of our friends have children... our desire for children of our own have diminished. We quickly learned that perhaps we just don't have those maternal and paternal instincts. Things that others thought were cute, we found annoying. So while we're still planning on having that conversation when I wake up fully, we're currently pretty much set on just continuing to be our friends' children Aunt and Uncle and avoid having kids of our own.

Since there's no known genetic link, passing on KLS isn't really a thing, so I wouldn't avoid having my own kids for that reason. However, age may become an issue as I'm not out of the woods yet and am into my early 30s... so if my wife and I did decide to have kids we might be looking at adoption of a younger child or teen.

Can you describe your first episode(s)? What made you realize something was wrong?

My first episode was during my sophomore year of college in Februaryish 2010 (I went to college a few years late.) I had just gotten over some kind of virus that kept me out of school for a few days. After a few days of getting back to normal, I started sleeping, a lot. I chalked it up to just still getting over the virus, but when I slept through multiple alarms for class a few days in a row, I thought something might be up.

It wasn't until it got worse and my then girlfriend, now wife, pointed out how insane it was I was sleeping so much that I thought I should probably go in -- but by that time I was pretty much useless.

I'm pasting this part from a previous answer: 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.

She eventually got me on the bus and into our school's health services, but they diagnosed me with a vitamin d deficiency and nothing more. I went to school in Duluth, MN... everyone had a vitamin d deficiency in February.

This lasted a couple months and I missed so much class I had to file for a medical withdraw for the semester.

You said that in time your KLS will go away, what do you hope your life will be like once it does?

Yeah, it should go away. The "typical" lifespan for KLS is 10-12 years. Though there are people in a KLS Facebook group I'm in that say they've had it 20+ years. With something so rare, it's tough to count on what's "typical", but I am super hopeful that I'm past the halfway point now.

My plan for when I wake up is to finish school. I've been 16 credits away from graduating college for 5+ years. I was a Political Science major and I really want to get into the field of Politics and Government. I don't know if I want to actually run for office or not, but I know that's the field I belong in. I interned for my state senator one semester and he told me that I was the best writer he'd met -- even better than him. That sold me that I was where I belonged.

That being said, I'm staying as far away as I can from that world until I fully wake up. I don't want to burn any bridges by volunteering for a campaign or trying to get a job as a writer or something and then having to quit due to KLS.

My current plan is to try and save up enough money by working oddjobs when I'm awake to pay off my old school the $6k I owe them. Then I can get my transcript from them and transfer to a school with an online PoliSci program. Even if I fall into an episode, I should be able to finish school online. The thinking is that even if I only have a lucid hour or two a day, regardless when it is, I can dedicate it to doing schoolwork. Ideally, KLS will go away and I'll already have my degree so I can jump into the field I want and get to work right away.

The most important thing for me is to be able to provide SOME income for my family. Right now, my wife pulls all the weight. I'm hoping with my hearing for Social Security Disability Insurance I'll be able to provide something... but for now, I'm basically a deadbeat. It's important for me to begin paying her back for all the years she was just as much my wife as my caretaker.

I know it's late but I have a question. If you fall asleep on the sofa, is there any attempt to bring you back to the bedroom or just lie there as you sleep?

This happens a lot, actually. I have a man cave downstairs that we call the "KLS Oasis" because I have a TV, mini fridge, microwave, bathroom, and comfy chair to fall asleep in. I basically stay down there most of my time being awake because our two dogs don't understand why I can't play with them or take them out, etc. So this allows me to get out of bed but still lock them out.

I fall asleep in that chair (or on the couch upstairs) a LOT. And then I'll wake up in the bed not having any memory of getting there. My wife usually shakes and forces me awake and essentially drags me into bed.

Have you tried Nuvigil?

Yes. I tried it for a short time but there was no real effect.

When I went to the Mayo Clinic to get a second opinion (for the sake of my SSDI application), I was handed a study of studies that I hadn't seen before where the end conclusion that there was no known treatment for KLS at all. Much of my KLS Facebook group is people asking if people have tried this or that different medication. Once I was handed that paper from a Mayo Clinic doctor, I accepted my fate that I'd be like this until I wasn't. All of the false hope that would come from trying this or that medication was more brutal than anything.

I have an adderall prescription that I take to force myself conscious if I have a social function I need to be present at (like a friend's wedding), but I'm a complete zombie and never remember anything that happened. But... at least I'm in pictures!

What are your dreams like during episodes? Before you had your first major episode, did you have any issues with insomnia or hypersomnia? Are there any “triggers” for you, like chocolate or caffeine trigger migraines for some people? Do you feel “well-rested” after an episode?

I’m fascinated by sleep, dreams, and sleep disorders (I actually want to focus my studies on sleep in college and try to get into a related field, so this is really interesting to me)! Thank you for doing this AMA.

My dreams are actually a strong indicator that I'm falling into an episode. I have CRAZY dreams in the weeks leading up to an episode. As far as when I'm actually in the episode, my memory is so bad

I asked my wife about this due to a similar question earlier, but she told me that I often talk about my dreams like I'm still in them. I chat with her (while "awake") about how I need her to bring something somewhere or how I need to do something that makes absolutely no sense, so it must be about a dream I'm having.

Before my first episode, I did not have any issues related to sleep at all. I had mono once when I was in middle school and that was the closest thing.

The triggers for an episode are different for KLSers, but the most common ones are getting over an illness, a blow to the head, or drinking alcohol. My trigger is getting over an illness. Every time I've had an episode it has been after I was sick. Now, not every time do I get sick do I fall into an episode... but I am hypervigilant about avoiding germs and whatnot. I actually just came down with the stomach flu last night, and as awful as that was/is, the bigger dread is that OMG what if I fall into an episode!? We currently have plans to take a vacation to for our belated 5 year wedding anniversary in April... and if I'm in an episode then that's likely impossible.

I feel very groggy as I'm coming out of an episode, so I wouldn't say I feel well rested. I usually have about two weeks before fully falling into an episode to get my affairs in order, and it's about the same amount of time to come out of the episode. Like, I'll have a good day and get excited that I'm waking up... and then realize that I'm not fully awake and am still very limited in what I can do. It's incredibly frustrating. The worst time in an episode for me is when I think I'm out of it fully and then have another day where I sleep 16+ hours and can't function.

Thank you for your interest. My motivation behind doing this AMA is to raise awareness of KLS and all the disorders on the hypersomnia spectrum. Sufferers are SO misunderstood and the more awareness that is out there, the better it is for all of us. There's little to no research being done on KLS, so I really do appreciate your interest!

Thanks for answering!

The connection to mono is really helpful — I had it last year and it was uniquely awful. I slept 20 hours a day for about a week and thought I was dying — I couldn’t imagine doing that for months. Man.

I hope you recover/outgrow this as quickly as possible!

Bringing up mono is funny because my mother swears I must have had KLS for 15+ years because of the time I had mono in middle school. She really doesn't understand that hypersomnia is just a symptom that can be brought on by many different things.

Thanks for your support and good luck with your studies!

What is the process to diagnose this?

There's no way to test for it. It is a diagnosis of elimination. They test for everything else and if it's none of those things, then it must be KLS. All in all, it took me about 2.5 years to get the diagnosis from when I first went in to a neurologist.

I did numerous sleep studies, a CAT scan, blood tests, etc. etc.

You’ve said you’re sort of conscious part of the day when you are in an episode, do you take care of all your food needs during that time? How is your appetite when you are out of episode and all here? How has your (presumably?) limited diet when your in an episode affected your body’s function? Does your blood work show abnormal iron, kidney liver enzymes...that kind of thing? What is a question you wished someone had asked?

A big part of KLS is hyperphagia (extreme hunger). Even though I'm only awake for a few hours a day, I usually eat 4-5+ meals worth of food in that time. I sometimes describe KLS as never being satisfied. I can sleep all the time but am never not tired. I can eat all the time but am never not hungry. I'm just never fully satisfied in any aspect.

It's actually really awful because I LOVE cooking, but because I'm so out of it I don't use the stove/oven, or any knives or anything like that when I'm in an episode. I can handle making a sandwich or pouring milk for cereal or something, but that's about it. 90%+ of my meals when I'm in an episode are leftovers that my wife made specifically for me, or before I started trying to get my weight under control with DDP Yoga, fast food.

When I'm not in an episode, my appetite is normal, but it takes awhile to get there. My body is used to shoving a ridiculous amount of food in it, so I basically ween myself off of eating that much slowly.

I was always a bigger guy, but while I was at my smallest in college before KLS... ever since my episodes started I've progressively put on a massive amount of weight. Which, makes sense seeing as how I spend half the year eating an insane amount of food and barely moving. The tough thing about KLS is not only does it affect me during an episode, but it often can take several weeks to a month for me to get back to my normal level of activity after an episode. It takes awhile for my body to be used to functioning again, so I really spend a majority of my time in a not-normal state.

In late 2016, I started doing DDP Yoga, and I wound up losing 175lbs in less than a year. I had a mild episode during that time and was able to stick to the nutritional plan albeit adding in a lot more veggies and whatnot. Then, in late 2017 I had a really rough episode where I could not stick to the plan at all. My wife told me stories about how I would be in tears and cry to her that if I didn't get a McDonald's cheeseburger I would die. I gained a decent amount of the weight back at that time, but am still down from where I started and will be jumping back on the DDPY horse.

I have a prescription for an appetite suppressant that I take when in an episode, which helps to some extent with the overall hunger, but does nothing for the cravings. Like if I get it in my mind that food X sounds REALLY good, then I won't be satisfied until I get food X.

As far my bloodwork goes, to my knowledge there's nothing abnormal. My docs have never really expressed anything like that to me, so other than just being a morbidly obese dude, there's no other effect.

You actually asked something that I wanting to answer -- questions about the effect that the hyperphagia has on me. I know that hypersomnia is the weird and exciting topic, but the extreme hunger is just as much a part of KLS as the sleeping is. I'm proud that I've taken strides to get things somewhat under control, but I'm not where I need to be yet.

I am not going to lie, I thought this ama was done by my ex-boyfriend at first. He also has KLS and is 31, but he lives in Wisconsin and was diagnosed in 2004.

Seeing KLS first hand is something else. I am sorry and I wish you the best, I truely do.

One question I have for you is how can YOU tell that you are coming out of a spell, compared to when your family thinks you are finishing one?

For my ex, I could tell he was finishing because he was go in his pantry and start to open all the resealable bags - focusing on the fine motor skills. He said his eyes would stop having rapid eye movement when he had them open and focusing his vision let him know.

I'm in Minnesota, so not too far away from him -- your ex and I sound to have had very similar situations. The only two people I know of in MN that have KLS are college aged females, so we don't have a ton in common, lol.

I can tell that I'm coming out of an episode when I am able to get thoughts out more clearly. The biggest constant reminder I have of KLS is when I have thoughts in my head that I can't get out of my mouth properly. When I first start waking up I'm actually able to communicate for a time. It's a good first sign that I'm on my way to recovery.

You keep mentioning missing out on months at a time. So the all day sleeping lasts for a few months and then you sleep a normal amount or not at all? How do you feel a week or so after an episode?

Yeah. When I'm not in an episode, KLS has no effect on me at all. So when I'm in an episode, I'm a zombie that sleeps all day. When I'm not in an episode, I have completely normal sleep patterns.

It usually takes me 2-3 weeks to fully come out of an episode. I start becoming a little more coherent and think I'm out of it, only to be slammed down back to reality and have another couple really bad days. By the time I'm fully awake, I've had enough "good days" towards the end of the episode that I can pick up life as normal again.

The hard part is getting my body used to function again. So while I can make plans and drive and start cooking and all that... I can't really go hit the tennis courts or anything right away. That usually takes about a month.

Thanks! So it would almost be accurate to say you hibernate lol? Many animals don't sleep the whole time. Just most of it.

Edit: how long do you sleep on avg after back to normal?

My wife and I joke about me "hibernating" every so often. Her pet name for me is Bear, lol.

My sleeping patterns when I'm not in an episode are completely normal. Well -- I'm a complete night owl, but past that they're normal, sleeping a normal amount of time, about 7-10 hours a day.

If you are still answering questions, I was curious how this would affect you physically. Things such as weight, muscle mass, etc. come to mind. How do you remain healthy when asleep for so long? Or can you basically "wake up" to eat and use the restroom even though you won't remember it happening?

I'm going to copy and paste my answer about weight from another question:

But yes, my weight has been a struggle.

I was always a bigger dude. A product of having two obese parents who never taught me proper nutritional habits. However, once I got to college, i actually lost a ton of weight and was the smallest I had ever been. This continued for about a year until my first episode hit in early 2010.

Ever since I've had episodes, my weight has continuously increased to a dangerous level.

It makes sense to some extent... that I spend half the year eating an outrageous amount of food and laying on my back 23+ hours a day.

I work hard to try and undo some of the damage I did when I wake up, but it's never enough. I just keep gaining and gaining.

Near the end of 2016, I found out about DDP Yoga and figured that since a lot of it was geared towards rehab, it was something that even I could try doing. I wound up losing 175lbs in less than a year. A feat I'm super proud of. I had one episode during that time, but it was pretty mild so I was able to stick to the nutritional plan for the most part -- just eating a LOT more veggies.

Then late last year, I wound up having a really rough episode in which my wife told me I would cry to her saying I felt like I would die if I didn't get a McDonald's cheeseburger. I gained a decent chunk of that weight back. However, I'm hoping to start back up on DDPY early next month and since I'm still a decent ways down from where I started, I'm excited about the progress I should be making.

I have an appetite suppressant that I take when I'm in an episode and while it helps to some extent with the overall hunger, it doesn't do anything for cravings. And unless I get a craving satisfied, I'm basically miserable.

It's also worth noting that even once I wake up from an episode, I don't jump back right into life. It takes me a few weeks to a month to fully regain my strength. I'm a big dude but I love playing tennis -- if an episode strikes anywhere near the summer my opportunity to play tennis at all is shot.

The negative health consequences of having such extended issues are what you think they'd be with my morbid obesity. Which is why I can't believe it took me so long to really try something with the DDP Yoga. I think a big part of it was understanding my mental health issues and getting on anti-depressants and all that. It allowed me to think about what I COULD do as opposed to always focusing on what I COULDN'T.

I wake up to eat and use the restroom and all that. I can't really prepare my own food (can't use the stove or oven or knives or anything), but I can microwave like a champ. I sometimes remember doing this and going downstairs to my "KLS Oasis" to watch something on Netflix... but I later wake up in bed and have no recollection of getting there.

What has been the biggest suprise/news you have heard coming out of an episode?

Nothing particular comes to mind. I'm a pretty big sports fan so sometimes it's how one team has been performing compared to expectations earlier in the season. I'm also a big political buff so I miss out on countless news cycles which is pretty upsetting.

Putting together the fact that you have a very rare condition and the fact that it's understandably hard to keep a job, were you ever propositioned of making "data collection" your full time job?

I'm thinking something on the lines of being a member of a paid drug test, but instead of taking any drugs you commit to wearing some data-capturing devices (think something like a Fitbit) and keeping logs of your dreams / behavior / mental state in general.

Or, do you know of people with your condition that are paid to be part of research programs like that?

Edit: I just figure researchers would be very interested in understanding how the condition works, and be able to attract grant money that would pay for you helping them with data. Is that the case?

Sadly, there is very little research being done for KLS. It's so rare, it's not life-threatening, and it goes away on its own eventually. There's not much money to be made by finding a miracle cure or anything.

We're at the point where all of us KLSers are just sending in blood samples to a research team at Stanford. So being a lab rat (which I would totally be willing to do) isn't really in the cards.

I'm late but I haven't seen anyone ask this.. On average, how much time goes by between episodes? Like how spread out are they?

Heh, you're right. No one has asked this yet. I actually have a list of what be BELIEVE are all of my episodes. Before 2013, there were likely times I fell into an episode but we discounted it as just being some other sickness since we didn't know to look for KLS symptoms.

Jan 2010 - March 2010 (3 months)

July 2011 - September 2011 (1.5 months)

September 2013 - December 2013 (4 months)

July 2014 - September 2014 (2 months)

November 2014 - September 2015 (10 months)

November 2015 - February 2016 (3 months)

May 2016 - September 2016 (4 months)

March 2017 - June 2017 (3 months)

August 2017 - December 2017 (4.5 months)

In total, that's 35ish months in the last 8 years I've lost due to KLS.

So there's no real pattern about time between episodes. It's more about when I get sick, which just happens to be usually when the seasons change.

Why did your wife marry you anyway given your condition? I mean sure it's love but it's a great burden on her I assume.

It's not to be mean or anything. Koodos to her that in these days people don't deal with others and a little issue becomes a reason for divorce.

I sent this question directly to my wife. Here is her response:

"love... 🙂 The person you are is much greater than your KLS. While KLS Jonatan isn't easy, he is worth it"

It is also worth noting that when we got married, we didn't know I had KLS... just that I had some weird sleeping thing that crept up every once in awhile. We got married in 2012 and I didn't have my KLS diagnosis until the end of 2013.

I see there’s a lot of new questions since you last hopped on, so I don’t want to overwhelm you by adding to the pile but...

My heart goes out to you and your wife. I feel your pain with losing friends and you mentioned video gaming / streaming as one of your hobbies.

What platform do you game on? I play PS4 and would love to be your friend and try to be supportive, even if you randomly don’t log on for months. 🙃

No other questions I guess, other commenters have all mine covered. I’ll shoot you my PSN ID in a DM if you respond.

Thanks for doing this AMA and answering a ton of questions, it’s been very enlightening and interesting.

Thank you so much for this comment. I hesitate to say it cheered me up above all the rest because there is a LOT of support happening in this thread. I mean, just people showing an interest is making me incredibly happy. But I will admit my face lit up writing what you had to say. So thank you.

Sadly, I play on Xbox Live and PC. It looks like our paths may not cross but shoot me a PM anyway. We can all always use more friends, right?

What was your longest time period in which you continuously slept?

It's tough to say this with any certainty. My memory when I'm in an episode is just awful. BUT, based on some stuff coming up on my Timehop from when I've said things like "wtf, I went to bed at X and just woke up!?", I'd say I've probably slept continuously for 18ish hours before.

If we add in stuff like bathroom breaks and not really being awake or having lucid hours, it's definitely been a few days.

Is KLS heredity? How do you make long term plans? For example how did you or your wife plan your wedding knowing you could fall into the sleep mode during that time period? Do you have memory lapses? Not recalling your girlfriend or not remembering your girlfriend being your wife? Best of luck to you and your family’s future.

As far as anyone knows, there is no genetic/hereditary link for KLS. There's not much research being done on it, but they seem to be pretty confident about that.

I'm actually a hyper planner. I planned our wedding, I plan events for friends all the time, I love filling up my calendar with stuff to do. One thing I've been working with my therapist on is trying to live more in the moment and not so much plan things long term. This is difficult for me, but I know that it will be good for me to do better at this.

Some things, however, kind of need to have long term plans for them. Like our belated five year anniversary vacation is slated for early April. I just came down with the stomach flu last night. There is a mutual concern between my wife and I that I might fall into an episode in the next couple of weeks and throw that whole vacation plan out the window.

We got married in 2012, before I had my KLS diagnosis. So we weren't worried about me falling into an episode because we didn't know what was going on.

My memory when I'm in an episode SUCKS. Often times people will be telling me stories about how they came over and we hung out one night when I was in an episode and I'll have no recollection of it at all. We're big board gamers, and sometimes I'll have a friend over and we'll pull out a game and I'll start teaching the rules and they'll stop me saying that we had played it before.

As far as long term memory issues like forgetting who my wife is and that kind of thing... no. Luckily I've never had any issues like that.

I once read (this is donkeys years ago) that sleeping more than 10 hours a day was bad for you, that it puts pressure on your heart. Are your doctors concerned about this at all or is it a myth? Thanks!

I haven't heard about this specifically -- but there are definitely side physical side effects to sleeping so much. My neurologist hasn't given me any kind of advice past trying to walk around at least a little bit every day, so either there's nothing that can be done about it or it's not that big of a concern.

Hypersexuality? Like being very horny?

Yep. I sometimes describe KLS as "never being satisfied." Like I can sleep all the time but am still always tired. I can eat everything in the house but am still always hungry. I can find plenty of sexual relief, but still not be satisfied in that regard either.

You said it took a long time to get a diagnosis, what was that process like? Does it show up in DNA or blood tests? Or is it more of a "this is really the only reason that exists for your symptoms".

There's no way to test for KLS. It's a diagnosis by process of elimination. I did numerous sleep studies, blood tests, a CAT scan, etc. They tested for everything else, and since I didn't have anything else, it had to be KLS.

I was very fortunate that the first neurologist I went to thought about it being KLS. I know many people that have struggled for many more years to finally get their diagnosis.

Have you tried an alarm clock, black coffee and a job?

I understand the downvotes here, but in reality, this (or some version of this) is the most common question I get. So many people think it's just me being lazy and unwilling to TRY to get up and be a productive member of society.

Alarms don't work. The only time I have any semblance of understand of what's going on in life when in an episode is when I wake up on my own. Someone can wake me up and shove me out of bed and I'm basically a literal zombie, with little to no ability to function.

I have an adderall prescription that I can take to force myself awake, but it's more like I'm forcing myself conscious. I'm pretty much worthless as a human being, but it allows me to make appearances to social functions I need to be at. For example, one of my good friends asked me to be in his wedding, and I fell into an episode around the time of the wedding date. I took adderall to get me through the day, but I don't remember any of it. I was an usher so I sat in the crowd during the ceremony, and I fell asleep. At the reception, I got some of my friends to play a card game with me so I could keep focused on something and stay conscious.

There is no known treatment or anything -- nothing has ever really helped anyone with KLS.

As far as a job goes, I hold down odd jobs for a few months at a time before telling them I won't be in for a few months and then losing that job. My goal is to still graduate college (I've been 16 credits away from graduating for 5+ years) and move into the field I want (politics/government), but I want to stay as far away from any jobs related to that until I'm awake as to not burn any bridges. So until then, it's random retail jobs for a few months a year.

Have you considered learning something like coding at one of the coding bootcamps and doing contract development work? I know people who have gone that route for other reasons. It might be something to look into.

I can't say I have. I appreciate the suggestion though. I know coding would not be my cup of tea... my wife and I joke that I'm a Microsoft Word person and she's a Microsoft Excel person. I've looked into writing on demand type gigs, but I haven't actually found anything that would work for me.