This video describes me so much.. I have seen so many doctors throughout the years and recently just saw one that said he wants to diagnose me with narcolepsy. Which is strange to me because that has already been my thought process. It fits, but not fully. While researching I found this as a related disorder. Wow does this describe me even down to saying "I'm tired" who knows how many times unconsciously. Along with this though I have nightmares every time I sleep. I haven't found any mention of nightmares with idiopathic hypersomnia so I am guessing I have nightmare disorder as well. I will be taking a ton of tests again soon, including an MRI next month. Who knows, maybe after 20 years I will finally get a diagnosis. Before it has always been blamed on me. Thank you so much for making this video. I also really love your art style. That comment you said about enjoying the time I'm awake instead of worrying over the time I lost is something I need to do.

I also have IH! Im always so relieved to hear about someone else who understands

I have 99% of all the same symptons you do all my life. I was finally diagnosed at 40 with Severe Type 2 Narcolepsy by a sleep clinic. The symptoms got way worse at 40 a little over a month before my 41st birthday. When you hear all the symptoms and what IH does to you and your life, as well as what Severe Type 2 Narcolepsy does to your life (they are very very similar), you honestly start tearing up as you wonder whats the point of even living anymore if its going to be through all this incurable hell and suffering for the rest of your life.

Hi Kat! Thank you for such an interesting and informative video. Like most I imagine, I thought narcolepsy was dropping down on the floor asleep so I’ve learned something today. I can’t imagine how frustrating it must be -but having a diagnosis and explanations for how you’re feeling must help. On the plus side, your art is always amazing - whatever you draw -so keep up the good work and take the rest you need 🤗 x

You're one of the few youtubers that make me want to watch the full vid! I love your calm voice, it's soothing and honestly really nice to listen. You deserve way more subscribers, the quality of your videos is real good! And perhaps I'll once in a while visit some sort of doctor, it might help me, dunno.

I have IH too! I have a medium sleep requirement of 10 hours average but experience more symptoms such as falling asleep during “boring” activities such as driving, college lectures, reading, and doing homework and work. I also get the thing where I’m aware yet not of my surroundings during these activities. Along with this I experience full body exhaustion and mental alertness where I have trouble doing everyday things. To help me with this and three other conditions - fibromyalgia (chronic muscle pain), anxiety, and PTSD - I have a service dog to help me! Thank you for sharing your story!! Hopefully the more patients talk about their struggles and help spread awareness, the less stigma and more understanding there will be. :) ❤️

My heart goes out you, because some of the things you mentioned I go through and a few things others mentioned in the comments like temperatures. I get sleep paralysis and it scares the hell out of me, it’s not bad but it usually happens right before I go to sleep like my body shut down before my brain could fall asleep. I also get waves of my body feeling extremely tired and as if I’m going to buckle by the knee and fall. And the only thing to make it go away or better is to sleep it off. Some of the things like speech problems I’ve experienced but I also could of had a stroke?? I’ve never discussed this with a doctor but seeing this video really makes me want to get checked out. I constantly tell everyone what I’m feeling and that it triggers my anxiety throwing it into over drive. And hearing you say that you can’t get disability because it’s not classified as one is very upsetting. This illness seems very debilitating, and I hope you continue making videos even though that whole situation with KZfaq is happening. ♥️

im 16, and recently got diagnosed with narcolepsy. i love this video, because when i tell people what i have, they instantly think of textbook, falling on the floor asleep suddenly. thank you so so much for bringing awareness to something not many talk about.

Thank you. This could not have been an easy video to make and you did it beautifully. You offer lots of straightforward information; I feel certain that this video is one of those pebble dropped into the water events with ripple reaching far beyond your knowledge.

This video helped me feel not so alone, I’ve seen doctors and (with my history of mental illness) have brushed it off and assume it’s my M.I or the fact that i need to lose weight. Thank you. I don’t feel crazy. I feel validated. Thank you.

I have Delayed Sleep Phase Syndrome with a side order of Non 24 Syndrome when under stress. Stress includes having to force my sleep schedule so it's pretty much all the time. I've had it my entire life, you are born with it, but they didn't even know it was a thing until about 15 years ago.. they finally located the genome that controls it about six years ago. My youngest daughter also has it, but my other two kids are "normal". They know about 17% of the population has it, and assume it's a lot more since most people never get diagnosed and there is a range of severity. Basically we are the people that kept everyone else from getting eaten by something when they would sleep at night back when we were all living in caves and huts, it's a genetic adaptation. There is no cure because I'm not sick. My natural sleep cycle is 7am to 5pm. Anything else is like working graveyard shift forever, but you never get used to it. I can't nap.. I can't sleep until it's "time".. if I miss that time I have to wait until the next window unless I become so sleep deprived I simply collapse. It's physically painful and mentally distressing to wake up when it's not the right time, and I don't function well.. I've lost track of time (including while driving), can't do math or any complex task, have memory issues, had hallucinations, etc. Sort of like having insomnia and narcolepsy at the same time.. unless I'm allowed to live on my own schedule.. which is basically impossible in society. I also collect sleep debt, which means I have to catch up every hour I miss before I'm "normal" again. Non-24 is a special kind of hell in which your chronological clock slips.. you can't settle on any "right" time to sleep it rotates around the clock for a period of days to weeks. I've spent the majority of my life (I'm 47) in some form of sleep deprivation, accused of being lazy, punished for either not showing up or not functioning well.. for something in my DNA. Even now that I'm diagnosed no one cares.. I'm expected to show up for appointments, be available, etc during "normal" hours regardless. I'm currently typing this while being awake all night because I have an appointment to get my washer fixed at 11am whether I like it or not.. it was the only option other than not having a functional washer. I function better on no sleep than three hours so I just stay up. It really sucks. Also sleep deprivation is a very popular torture technique for a reason.. after a while you would literally do anything if you could just get some sleep. Sleep disorders need more respect.

I have IH and OMG you literally just described my exact experience with sleep paralysis but I didn’t know it was that, I was sure I didn’t have sleep paralysis cos idk my image of it was different? I lose my ability to speak too and try to gesture things while crying cos idk why my mouth/voice won’t work. Right after I fall asleep, but I am also conscious of everything around me. I can’t move or respond to anything during those times. I used to think I was awake at those moments but just too sleepy to actually move but when I do wake up (tbh it doesn’t feel like waking up cos it didn’t feel like I fell asleep, not really?) suddenly much time has passed. And I thought I was just sitting “immobile” somewhere for ten minutes but in reality it is an hour or more. Now I understand my multi-latency sleep test too! I was convinced I didn’t sleep during any of the naps but according to the results I was asleep every time within minutes, and I even went into REM within 5 minutes during one of the naps. It just all feels so surreal

I wished my parents knew about these kinds of conditions..they would understand me more and we dont really talk about these problems..I have the symptoms and im still in highschool but its only very mild. My class starts at 7:30 am and its very hard to wake up very early since I need more sleep and I dont really have a "wake up time" I just wake up anytime..I would sleep at transportations and it's scary to sleep in a public place with strangers around you..

Kat- I love your videos. I, as a teen would sleep maybe 4 hours a night or less, and like you take micro naps. I know know that I do not get deep REM at all so on meds. I still have nights of no sleep, they can last up to 72 hours then I am out. One day people will understand that any diagnosis has multiple layers to it and not to assume.

Kat...thank you so much for being so open and honest in your videos. I’m so sorry you are going through this.😕 I’ve struggled with Fibro and Chronic Fatigue for years now and have had to give up my career to stay home because my symptoms have gotten so bad. You really touched my heart when you were talking about the difficulties with friendships and having to cancel plans frequently due to health issues. I too mess up my words ALL the time and I get completely lost in conversations🥴 ugh! I’m right there with you! I’ve not commented before, but I have been really enjoying your videos! Thank You!

It was really cool to hear about someone else’s experience with this sort of sleep disorder!! 😮 I have something similar but I’m not sure what since it’s undiagnosed. I had a sleep study when I was 19 circa 2009 & I always hit REM around 8 min. Which is super abnormal but not enough to be considered narcolepsy. The Doctor basically said they weren’t sure what I had but it didn’t quite qualify for narcolepsy.😓 I should probably work on getting it diagnosed so I can be helped but it’s so dang expensive!😭I always get depressed about the time I miss out on as well & feel like I’m not using my time wisely enough which sucks.😢 The thing about people with cataplexy avoiding strong emotions just clicked so hard when you mentioned it though! I used to get something we called “dizzy spells” in high school that would render my muscles useless and I’d fall to the floor (always getting sleepy afterwards) after some bigger emotion. I just kinda conditioned myself to stay super chill no matter what and the spells went away!! 😅 anyway, thanks for making this video and being super genuine with us about stuff!! 💜 honestly you’re a big inspiration with how much you get done! The videos, artwork, & even a book!? You get so much done!!!😭👏🏻👏🏻👏🏻 It is absolutely AMAZING!!!💓🎨

this was an amazing video!! i have severe insomnia so it was interesting to hear about a very different experience than mine outside of an academic setting (1st year psych major lol). also, your art (as always) was phenomenal!!!

Ditto! I have IH and found out soon thereafter I have Dysautonomia and Ehlers-Danlos. Driving is the very worst, I agree. I also have fun visiting the pilgrims in the arctic exhibit at the zoo. Sigh. Sending you a caffeinated salute!

💖 this is gonna be so helpful to folks. It’s tough when something you’ve got no control over inconveniences others, huh. 🤗

Thank you for making this video and being open with us, Kat! I didn't find out until my early 20's that I had sleep paralysis and spent most of my childhood through late college years having such issues, all because despite it running on one side of the family in different ways, people thought I outgrew it at an early age just because I was always physically active or doing something and avoiding naps at all costs. And dealing with the hallucinations and serious night terrors didn't help, which got to a point where I feared falling asleep for a long time and always felt tired because the symptoms would make me feel like I barely slept at all. I finally reached a point where I don't get such episodes anymore because I luckily was able to remove several stress factors out of my life, but I still have to find balance between a healthy sleep cycle and living a "regular life" and remembering that sleep debt isn't something you can really pay back. I do have some CFS symptoms, but they still think there's a chance it could be handled with different means before trying out medications. I'm still pretty lucky in my scenario for now, but I know people who have similar issues where they can easily fall asleep in several scenarios, including a coworker who essentially needs a buddy for simple things like whenever she goes to the bathroom or out to lunch just to make sure she's okay because she will easily fall asleep at the drop of a hat. She wasn't even diagnosed with narcolepsy until this year as well, even though she's had it for years and her doctors assumed it was a symptom of other medical things she has going on. Sleep health is a combination of mental and physical health, which really does vary in so many ways in each case and can't just be immediately resolved overnight when an issue comes up. It takes time and I do agree that everyone should do sleep tests at least once to make sure everything is good and not just wait until something more serious happens.

I often sleep like a cat, dozing for many hours a day. But I enjoy it, just resent the wasted time. I like sleeping, in the way my cats like to sleep, just wish it didn't eat away so many hours. I've never thought to see a doctor about this, mainly because sleep is so comforting and nice.

Lately I've been diagnosed with IH for now and still going through testing to finalize that I have it or not and watching this helps me because idk anyone else I know who has it but atleast im not alone

Since I found out I have EDS it's been an avalanche of other dxes. This is one of them that I never would have guessed, hypnagogia is a huge thing for me on top of the sleep paralysis. Auditory hallucinations while I'm waking up or falling asleep are especially common for me. Your experience sounds almost exactly the same as mine. I appreciate people who are willing to talk about these things, you could be helping someone connect the dots and save them a lot of time and pain.

This art is so fun, I love the idea of sketching and water coloring over it but was always was afraid it'd bleed. But the way the colors all meshed were so fun to watch! Thank you for opening up about your sleep disorder. I don't know if I have one but my sleeping has always been sporadic and it's only gotten worse as I've got older. Lately im always tired even when I have the recommended (not too much not to little) sleep. I always need a nap in the middle of the day and just thought it was me being lazy. That may be but your video has given me the push to go get it looked at

I'm 15 and its took about 9 months for me to get diagnosed with idiopathic hypersomnia. It sucks having this because my brain just kind of.... Shuts down completely, but my body would be awake. Its like the two were fighting, and my body can fight back for a little, but eventually i just pass out. This is the first video ive seen thats actually described what ive been going through fully, and i thank you for that. One of the meds that i've been on has worked, however i lost 8 pounds in a week, so im off that medicine now 😅. But thank you for making this, i feel heard finally.

I was diagnosed with narcolepsy about six years ago and finally having something that explained my weird life was soooo helpful to me mentally! And with all the new research being done in this area, I’ve identified the root cause of many seemingly unrelated and inexplicable symptoms I’ve wrestled with for years-such as not having a well-regulated body temperature.

This was sooooooo helpful! ❤

Thanks so much for sharing! I am amazed at how many people suffer with illnesses or have conditions that we cannot always see. It makes those of us who have them, feel more normal.😊

This video meant so much to me. Thank you. Just got diagnosed with IH

Girl! I feel! I once fell asleep standing up leaning against the wall at a con! (I have SLE and fibro). It sucks to let your friends down because you HAVE to rest. Some of them get it, but it’s still never fun. I’m glad you got a diagnosis, and are listening to your body. Also...those Sennelier look great over graphite!

aw that cat clip in the end❤️ thnx for sharing!

Sending you Good vibes. Thanks for the info and video. Keep smiling 😃

I'm pretty sure I have some sort of undiagnosed sleep disorder but I also have fibromyalgia and everything is "maybe it's a symptom of fibro" or whatever. The medical community has been very educated and very useless, but I digress. I just wanted to let you know that I find it super shitty that you don't qualify for disability (I haven't even tried because I am too exhausted of hearing "we can't help" and I might actually burn a building or someone's face). I admire that you have found a way to make a job out of your talents, and I truthfully wish I had the will/energy/mental acuity to do the same. Either way, chronic illness is butts and cats are cool.

This was super interesting! I hope you're feeling ok! I sometimes get sleep paralysis, so I knew what you meant, but everything else was new and very informative, thank you for sharing!

I was wondering if I had some kind of sleep disorder but never got to going to a sleep specialist. I’ve always been an extreme sleepyhead, I can sleep upwards to 20 hours a day if given opportunity and can only stay up if I’m pumped full of coffee and keep busy - I’ve slept through 3 days straight that one time, only getting up to eat and use restroom/shower. No random falling asleep though... Also about hanging out and my friend having to nap - I’d be more than happy but only if I get a blanket to nap as well 🤣

I've been struggling with IH (not diagnosed yet). I'm not one to self diagnose, but when you sleep on an average 20hrs a day a for the past 15 years, are still exhausted, physically can't get out of bed, or fully wake up, something is very wrong. I don't get sleep paralysis, or hallucinations, however it's sleep inertia/drunkeness. I'm trying to get help, but half the battle is getting someone who believes me. It has literally ruined my life. I'm a POS loser who just takes up space. I've been Given everything and every chance to excel, but sleep has destroyed my life.

I have always been a good "sleeper", however, after a deep brain concussion in 2008 to the back of my head, I had HUGE issues waking up and staying awake. Finally after many neurology visits to treat the concussion (and benign positional posterior vertigo from concussion) my neurologist sent me to a sleep disorder clinic. At that time in 2010 (yep, 2 years later), I was diagnosed with Idiopathic Hypersomnia. The doctor at the sleep clinic stated it should go away gradually as my brain continued to heal itself. Here it is in 2019 (11 years later) and I still have IH. (Pretty sure that concussion is all healed at this point). I take 250mg of Nuvigil (Armodafinil) and 80mg of Ritalin (Methylphenidate) daily to stay alert/focused. With that being said, I rarely allow myself to nap. IF i do, it's because I am sick and need the rest. IF I allow myself to nap any other time, I am down for the count until at least 7 hours have passed. UNLESS, I have someone wake me after the typical half hour to an hour. Every day, I have alarms start to go off at least 2 hours prior to when I absolutely HAVE to wake up. Usually 12 alarms set to go off every 15 minutes. Really LOUD obnoxious alarms. (I have even used a school bell hooked to a timer, set within 5 feet of my head. It worked for about a week and then my brain got used to the sound and it no longer woke me up. It woke up the rest of my house and some of the neighbors, but not me). "She sleeps like the dead" is not just a catchphrase, in my life. When life stresses me out or I haven't gotten enough sleep, I have the propensity to sleep walk and sleep talk. Last night for example, my partner stated I woke him up as I crawled back into bed and told him his dad had called earlier. He told me, "Lisa, my dad is dead." (his dad is dead and has been for about 3 years) I then told him it must have been the day before. I proceeded to lay in bed and go to sleep. He said it was 6am when this happened. I had went to bed at 2am. As a result of these types of incidents, I have to wear "decent" clothes to bed. Just in case. I have driven places, woken up with my car idling in the garage, went for walks outside....naked....in January (I live in Illinois. It's icy and/or snowy in January here), talked to people and had no memory of it, etc. (Hence the clothes to bed and hiding the car keys routine I have to do every night). The thing I really miss having is the motivation to do multiple tasks. Today (probably due to my "walk" last night) for example, I am alert (thanks to the meds) but at the same time I have zero motivation to even begin the tasks I set aside to do today. (Yes, I plan out my daily tasks). Today, I wanted to do laundry and make a cassarole. So far (I've been awake and medicated since 10am) I have taken a shower and gotten dressed. I even managed makeup. But then I sat down to put my shoes on and I haven't gotten up since. Tonight, I will go to bed at a more decent time. And hopefully I can do today's tasks tomorrow. Tomorrow I was giving myself a day off. So no biggie there. My MSLT (daytime nap study) showed that I fall asleep within 30 seconds of laying down and go to full on dream sleep within the first 2 minutes. I stay in full dream state until I am awakened by someone (or at night after I have been asleep for 6-9 hours and someone or something awakens me for the new day). So essentially my brain never rests which causes me to be tired or feel tired all the time. As a 53 year old struggling with IH, I am just now noticing I am becoming a wee bit more forgetful. I don't know if that is because of the IH, long term stimulant usage or the fact I am getting older. Well I hope that made the murky waters of IH a little less murky for anyone else reading this.

What you describe in minute 2 into minute 3, the difficulty speaking, is a minimal extent of Cataplexy.

I have chronic fatigue caused by Lyme Disease. Obviously this means that no matter how much sleep I've had I wake up fatigued. I often get the same sudden "I need to sleepnw. no right now" urge you describe. I can't fight it. I have to sleep that moment. I think I have had a sleep disorder since prior to the Lyme - very bad chronic insomnia since childhood including sleep paralysis like you describe. BUT I've never seen a sleep specialist. I really should. thank you for your video

THANK YOU !!!!!!!!!!!!!!!!!!!!!!

Here you are talking about self care and all I can think is "OMG it's Lin! HOW LONG MUST I WAIT FOR THE NEXT BOOK?! NO REST! BACK TO WRITING!!". But yeah, self care is important. Fine. WhatEVER. I'll be patient.

Hello everyone, I have recently been diagnosed with IH, and I would like to share my story. It all started earlier this year, when I started falling asleep a lot. Doctors were practically convinced it was narcolepsy (and catalepsy). Here were some symptoms and situations: - I would fall asleep doing almost anything, for example, falling asleep on the bus, in class, during sports, during talking, in stadiums, while cooking, while walking ect -I would have numbness/tingly sensations in my legs when I started to fall asleep and woke up from these sleep attacks - I would fall asleep within minutes or seconds - I would yawn a LOT -then my eyes start to flutter and go to the back of my head -my head droops and BaM I’m alseep I wanted to share this with you guys, it’s been making my life hell and I’ve never met someone like me. I had a sleep study which concluded it isn’t narcolepsy, and I was diagnosed with IH. I have felt with depression, anxiety and servere ocd so I already take so much medication, but I now take sleep medication (dexamphetime that can help with narcolepsy). I hate my life, I was at the top of my class, and now I’m near the bottom. I question if I will ever be able to get a job, be able to drive, be able to live a normal life. Please if you guys know anything please help me. I’m a 15 year old girl, this should be a time in my life where I have fun, but most of it is spent asleep. Thank you so much -jasmine

Gee, if it is not considered a disability but you can't get a job, that must be really scary. I hope you have a way of paying for bills. Your artwork is great. Thank you for talking about this topic. I learned something which is always a good thing.

I have this, I’m military and I get shit talked too all the time. My flight doc diagnosed me and I can’t fly now. Now I’m scrutinize and looked as weak

I laughed at my sleep doctor when she said she thought I had narcolepsy Still figuring out if it’s IH or narcolepsy

Hmmmm I need to talk to my doctor about sleep stuff I always have sleep problems though im having tests for stuff right now (my doctor thinks I have fibromyalgia and or cronic fetige but I'm in my second year of tests so hopefully I'll get answers sooner rather than later)

This sounds like it would be a horrible thing to live with. *hugs* That having been said the scientific part of my brain wants to get out the clipboard and white lab coat and ask you ALL the questions. I am fascinated by what you just described. Especially the bit about sign language and being able to sign but not speak. Have you tried writing in that state? Does it make sense after? The reason I ask it because I have recently had an encounter with aphasia in an elderly relative. She lost the ability to speak and tried to write things out but it just came out gobblygook. The doctors said that since he speech center was affected that it included all communication including reading and writing. Which makes me curious if it's your speech center that is affected or something else. Also curious....because back when I attended cons a lot I had this really bizarre incident: I was working security/first aide because I was certified when one of the con goers was reported wandering around in a confused state. He was holding his teddy bear and was being belligerent to anyone that tried to stop him. When I got there I managed to get him to sit but he could not talk only sign, which I didn't understand. I got him sugar, which did not help and together with some other security girls (he wasn't aggressive towards us, just men) we got him to him room where he promptly passed out. Turns out he had been eating poorly and had not slept in 4 days. But I do wonder if what he was saying via sign was anything rational....curious Kitties want to know.

I have IH and it’s hell 😭

How do you make it to appointments which are set? 💛