Narcolepsy Myths Debunked

The Doctors are joined by pulmonary and sleep specialist Dr. Raj Dasgupta, who helps debunk myths surrounding narcolepsy - a disease that affects about 200,000 people in America.
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[@joeyboyd5277]

I have narcolepsy and their needs to be another word used besides day time sleepiness bc it’s only a type of exhaustion someone with the condition could possibly understand it’s not simply being tired it’s more like being stuck inside sleep. Stimulants work but it’s like using nitrous in a car without any fuel short lived burst of energy.

[@jordanholstein8023]

Joey Boyd You described it perfectly. It’s as if everything is a daydream with no real connection with the moment.

[@misssmoove2767]

Perfect wording

[@jakelyon7466]

Is this me lol?

[@Mipetson747]

I have it too, and I agree. It's exhaustion to the max.

[@Rgucci7407]

Thank you!!! So on point!

[@theregalreptile3953]

Thanks for addressing that Narcoleptics aren't lazy. I was undiagnosed all through high school and 3 years of college. I was constantly called lazy, got tested for blood problems- nothing. I fell asleep during church, had paralysis IN THE MIDDLE OF CLASS. I'd fall asleep while doing home work- and watching movies. I'd go to bed at 9 every night, and mom made me mark it on a chart kind of as a punishment. We'd go to this lady's brakefast every Wednesday at 8 am....and if I fell asleep I'd be punished for staying up too late. Eventually this led to serious depression, more stress (Which made me more sleepy and have more terrible paralysis episodes, memory loss, crazy loud outbursts) I almost asked to go to a mental hospital or something and FINALLY someone suggested I get a sleep study. it still took 2 years to get a Dr. Worth their salt because my first one was a sham- last one just looked at my info and was like "...you obviously have serious Narcolepsy" Got some meds, felt like a real human.... went back to college.... teachers- mom, everyone completely treated me totally different within a week of knowing the diagnosis. Went from "I can't believe you fell asleep AGAIN," to "...I saw you fighting to hold your head up, You're so strong. I'm so proud of you." Part of me was happy, but part of me was sick of how shallow people can be and how quickly they change their tune when it's an actual problem, even when days earlier they can be so mean and uncaring.

[@kathleenscallan4629]

O my gosh. I’ve gone through the same thing for over 20 years. I’m diagnosed with me/CFS, FMS,epilepsy, mvp, thyroidism (PTH). and more. And my family (who doesn’t see me but a couple of times a year) tells everyone I’m just lazy and don’t want to work. Im almost 63, and my siblings are so cruel and have pretty much disowned me. My friends who really know me can’t believe they are like this. Their angry. But, it’s still very painful to me. God Bless all of us. 🙏🏻🙏🏻🙏🏻

[@theregalreptile3953]

@@kathleenscallan4629 I found it helpful to search inside yourself to really find out who you were regardless of what people called you. If you're lazy then you wouldn't be trying so hard not to be. You're a strong person keep that in your mind no matter what everyone else says. I'm glad you have friends!

[@cherrysmith-condon2425]

I was diagnosed 31 years ago, my family still bullies and shames my for my sleep. You are very fortunate to have been born into a compassionate understanding and supportive family.

[@SirPaulMuaddib]

Is hypocretin = orexin? Are they the same thing? Are there supplements to replenish it?

[@PurpleHairOMG04]

I'm glad narcolepsy was addressed in a big show like this! Most people have no idea what it is. I'm lucky I had a great doctor who listened to my concerns and referred me to the right specialist when I went to her two years ago.

[@boohaa7575]

Does medication help?

[@lexi_b6169]

Boohaa yes I have narcolepsy and cataplexy and I take 4 pills a day and a take xyrem for sleep, medication extremely helps me and I’m sure others.

[@creepingjennie]

Would have been nice to touch on the fact that being chronically sleep deprived is horrible for one's health......

[@emberdt7998]

Creeping Jennie *guess I'll die* lol no but seriously. There are alot of genetic disorders in my family. I'm 19 and already experiencing some symptoms of things. My mother was told she may develop narcolepsy. My sister and I rely on her for alot of things so it is worrying.

[@nightingalebou2342]

Creeping Jennie :(

[@lawill3559]

You just did

[@myfavoriteplanet3247]

The bigest myth not mentioned is If you don't instantly faint into sleep, you're not narcoleptic.

[@moonmoon6591]

yep! I get so sick of that in hollywood

[@bigsandwich1238]

what they dont understand is there is a lot of depression that comes along with it. its caused by the numbing of your life, the fact that when you fall asleep during the day you miss out on a lot of stuff and you can eventually watch your life fly by. the worst part though is not being able to laugh or get angry,. i have had cataplexy when i get strong emotions and it makes it hard to get angry. i cant defend myself if confronted, if someone were to attack me my body would go limp. if someone tells a funny joke, i cant enjoy it, the cataplexy numbs the feeling of it. its almost to the point that i feel nothing. i dont know why but i can feel sadness perfectly fine without being hindered by the cataplexy. so all i feel anymore is sadness. it eats away at you and makes you realize how worthless you actually are after a while. if it wasnt for the stimulant medications and diet that i eat to regulate my sleep and body i would be a zombie and thats relly frightening. plus of course theres the hallucinations when you go to sleep and or wake up. going to sleep is fine because im aware of it happening and can be like oh ok great now im paralyzed, it just sucks. waking up is what i fear because your dream creeps into reality and can literally horrify you because youre not concious enough to know its not real until you wake up.

[@weazy.b4487]

I got misdiagnosed with schizophrenia iv lived 8 years thinking I was crazy...turns out I'm narcoleptic.

[@svenmurphy-deyoung8209]

I describe my narcolepsy with cataplexy as "the lines between awake and asleep are blurred more, and things meld together"

[@Brisleep1]

I'm surprised there are no comments! I'm very happy to see that everything in this video is correct! I've been a narcolepsy advocate for 25 years and there are so many doctors who don’t have a clue about this neurological disease.

[@josiahpeterson6422]

I was just recently diagnosed with narcolepsy, and I was just astonished that when I went to checkups to the many doctors and psychiatrists, they said "I would have never guessed." And my first visit with my sleep doctor went something like this "I think we know what the problem is."

[@MasteIsIllmatic]

Josiah Peterson Me too. Those stimulants sure saved my life.

[@martna6969]

I have had narcolepsy and cataplexy from the age of 14 and was not diagnosed until almost 11 years later.

[@amsimms77]

I started having symptoms when I was 12 but was misdiagnosed until I was in my 30s. I was always diagnosed with depression or cfs. Anyone who revolves everything they do around how tired they are at any given moment is going to be a little depressed! It's no fun. Finally after finding a new family doc and taking in my attendance history from work, she asked if I had ever had a sleep study done. She was pretty appalled when I said no doctors had ever mentioned that as an option or something to have done for a closer look at things. She had it scheduled and within a week I was there and as the tech or nurse that was keeping an eye on all my results and data coming in from the naps etc..he said..I'm not the doctor..so I can't diagnose you..but when you come back he is going to tell you that you are a textbook narcolepsy case. And...he was right. Life is somewhat better now..but it's still a struggle at times.

[@MrsLadyLiberty]

Me too!

[@lacystacychick]

I have had narcolepsy for several several years ..... Lol as a child it was a horrible for my parents. I would see hallucinations at night and sleep paralysis and I literally seen demons in my face and spiders nightly .. my parents thought it was night terrors I was in face diagnosed with sleep panic disorder around 15 and depression from age 6-15. The only reason I got diagnosed was because I started slurring like crazy and went to a nuerologist and a sleep study was done and I have it. Years and years and no one knew what it was . I'm 24 was diagnosed at 23 . So yeah it's misdiagnosed alot

[@HillbillyYEEHAA]

Same here. Everyone called me a liar saying It was nightmares. I was 4 when I started. Sleep paralysis as a child is awful.

[@sixionzear6329]

My teachers used to be so abusive about my narcolepsy and thought I was just lazy and wasn’t caring enough about learning even tho I was in honors. I tried. So. Fucking. Hard. To stay awake. They only started taking me seriously after I was caught stabbing myself with a pin under my desk and I had scarring in my mouth because I would try to use the pain to stay awake with adrenaline.

[@miegravgaardxoxo]

Same experience here.

[@MinatheMenace]

I used to fall asleep and slam my head on the desk from passing out. One time I did this during a test and the teacher made me finish my test in the hall cause I was being "disruptive" to the other students.

[@neverloseyourvoice5263]

Same...

[@anniesykes3810]

I have narcolepsy and this is all true

[@cellogirl11rw55]

Annie Sykes Do people who have narcolepsy also often have RLS? I have that, and I wake up with it multiple times a night. I'm also really sleepy during the day and have briefly nodded off while doing my active job. It makes no sense.

[@GiuseppeSimonetti]

Annie Sykes I have Narcolapsy and Cataplexy. Nobody I know understands what I go through

[@emmamatthews7807]

Annie Sykes I also have narcolepsy and also suffer from cataplexy and you're right all this is true.

[@paulduplex]

I have narcolepsy & cataplexy too, it's very debilitating. Please don't think I'm being negative when I say I'm now just waiting for my death, but I've had a great life and I'm ready to see the next. Problem is though, I'm only 47, probably got another 20 years to wait.

[@daughteroftheking2344]

Paul Duplex I have Hypersomnia and although not as debilitating as narcolepsy, it still sucks and I can relate to your comment. I’m going to keep you in my prayers.Take care of yourself 💗

[@guardie1927]

I was lucky enough to be diagnosed within 6 months because my doctor saw how i abruptly got exhausted just sitting in a chair and was concerned. She even mentioned it could be N!

[@tyrone1498]

took me 6 months to be diagnosed, 1 sleep test and that was it.

[@miegravgaardxoxo]

Lucky you 😄

[@misstery5942]

Day time sleepiness I want to cry from Exhaustion and frustration of not sleeping at night properly

[@LiseGood]

Diagnosed at 15. Everything they said is very true. I experience every symptom everyday. Thanks for the awareness.

[@averynonym]

Been diagnosed with various things such as anxiety, depression, and ADD. I’m having my first sleep study for narcolepsy next month. This video it’s pretty close to home. And it has been almost 10 years for me. I’ve been dealing with this since I was 15 and now I am 23. We aren’t sure yet if it’s narcolepsy but what kept me from checking it out was a misunderstanding of the disease. I don’t have severe falling to the floor cataplexy but I have muscle weakness in my arms, hands, and legs. I have the hallucinations before sleeping, daytime sleepiness, sleep paralysis, and interrupted nighttime sleep. We need proper education of these things. If we did have it, I would have checked this out years ago and stopped blaming myself and calling myself lazy, unmotivated, etc.

[@nunyabiznes3901]

I didn't understand until seeing the sleep doc that narcolepsy has such a spectrum of severity. My 7th grade teacher fell asleep standing up, so that was narcolepsy to me. When the sleep Dr said he thought I had narcolepsy, I was like no freaking way. But the more questions he asked, the more it sunk in. I have all 5 symptoms.

[@thecomictutor]

I have type 2. Its like a fog that stays with you and you're never able to shake it

[@reeigan]

Me too! It’s so hard because there isn’t a super visible symptom like cataplexy so its always “oh you just need to get more sleep” or “go to bed earlier’ - so frustrating lol

[@Jesper007]

I have also type 2 and the diagnosis shocked me bc i couldn´t belive this is the cause of my exhaustion. i can feel sleeping attacks and i can stay awake during the day. I mostly asleep sudden when its dim or dark or I´m passanger in a car

[@annegeiger8621]

THANK YOU to both of you! This disorder is sooooooo misunderstood and often makes those of us with it the butt of many jokes.

[@NancyTigress]

Misdiagnosed for years! Finally got a doctor to listen and take me seriously. About 6 years ago. Definitely going to make a storytime about it. I'm ready! 🌞

[@sebastienbolduc5654]

Been narcoleptic for 30 years.. The worse thing about it is not being able to sleep for long periods of time. Or we experience many micro sleeps while we're sleeping. When my father passed away a year ago I was given something to help me sleep and holy cow, the difference it made in my excessive daytime sleepiness! The problem with narcolepsy is the way they treat it. They focus too much of giving us agents to stay awake. What we need are agents to help us sleep. It's an issue of risk verses quality of life. But yet I know so many people who aren't narcoleptic and are given agents to help them sleep; however, when you're narcoleptic it's almost impossible to get anyone to give you anything. So on the medical side of things, with MDs, there is also a stigma related to the treatment of narcolepsy. The dangers of being a narcoleptic is that it puts you at a elevated risk of not being able to identify the presence of disease,/illness than the average person. Sometimes an underlying symptom/sign of disease/illness may be fatigue, which can signal to the narcoleptic and/or health professional that something is wrong. With narcoleptics this often goes undetected as being a symptom of their narcolepsy rather than some other health issue. In my case I was apparently pre-diabetic in my 20s (in shape person, not overweight) and I was diagnosed type 2 (yet to be determined) at age 39. All those years I never knew and was not medicated for diabetes. All those years my fatigue was amounted to being linked to my narcolepsy by a horrible doctor! So I know from experience that if you're a narcoleptic you need to be very careful with your health, especially concerning illnesses where fatigue is a primary symptom. Health professionals may not catch it on time. Due to these elevated risk factors a narcoleptic must be periodically followed up for their rest of their lives, for those who have the privilege of quality healthcare. You need a professional who can assess whether your fatigue is linked to you narcolepsy or some other underlying health issue/s. And a little piece of advice for narco's who are younger than me, most doctors don't know jack about this disease!" They may know about it but they know nothing about it. Honest MDs will confirm what I just said here! So be careful with doctors concerning your narcolepsy and overall health. I cannot emphasis this enough! There is no need to suffer for years nor decades because you put too much trust in doctors who stroke their own egos and cannot admit to you, "I don't know jack!" If you have other health issues it's too hard for them to assess your situation in correlation to the narcolepsy. So you may find yourself being bounced around from one professional to the next. You're a complex case for them! Instead, they prefer cookie cutter medicine. Like any other profession, some people will leave the hard or unpleasant work for someone else to perform. So it's safe for me to suggest that you are your first line of defense when dealing with medical professionals.

[@Sage03]

I have all those except cataplexy, and narcolepsy runs in my family, so I think I have it. But I’m only 15. Also, my narcoleptic aunt is a doctor btw.

[@TrainPlaneBoat]

Its a debilitating condition!

[@jenelaina5665]

Fantastic video - spot on. Would like a disclaimer about the site mentioned at the end, but otherwise, thank you.

[@dawn9436]

I found out I had narcolepsy when I was 15yrs old I am now 47. It's very hard to find a doctor that is up to date on the medication. And I have all 5 symptoms. I'm glad I found these videos. Maybe it will help me find a doctor to help my control my sleeping issues.

[@GiuseppeSimonetti]

I have Narcolapsy and Cataplexy. Nobody I know understands what I go through. I have Sleep paralysis a lot as well and hallucinate

[@agal5839]

experience dreams as reality--- omg so true!

[@JessicaPandino]

and reality as dreams! haha!

[@misstery5942]

I have narcolepsy gene but I don't always fall asleep involuntary ... but I am severely fatigued all the time .. I have had a few eps of like me day felt unwell had to sleep and woke up at end of day and thought I had been asleep for days and didn't know where I was this was at highscool fektbinlost days!!! Sleep paralysis, talking in sleep, layhjimhbin sleep, Crying in sleep

[@mickeyb4441]

I LOVE THIS DOCTOR OMG. SUCH A LIVELY, IMFORMATIVR DUDE!

[@kathleenscallan4629]

I’m just seeing this. As I keep nodding off constantly, then at night I can’t sleep. (Insomnia ) I was diagnosed with chronic fatigue and FMS over 20 years ago. Along with many other things. And my pain from several issues is crippling and constant. I don’t know which is worse. But I might have to choose the horrible fatigue and exhaustion. It’s so bad as soon as I wake up in the am (no matter how many hours of sleep). I’m still so sleepy all day. I’ve noticed if I’m talking to someone it’s not bad, but as soon as they leave or I hang up the phone, it comes on like a vengeance. I immediately start dropping my eyes, head and shoulders. From seconds to a few minutes. It’s a vicious cycle. I have strange hilucinations. Does anyone go through something like this? I would love some feedback. God Bless all.

[@reeigan]

I have type 2 (narcolepsy w/o cataplexy) and this describes perfectly what I experience daily. I usually dont have trouble staying awake while preoccupied with something like a conversation, but if there is nothing immediately in my face like that then i nod off. I distinctly remember nodding off in my high school econ class and “saw” a dragon sitting on my teachers shoulder lol. I had a sleep study conducted and the docs were amazed because i entered REM within literally 30 seconds of falling asleep. It’s a strange thing but one of the meds prescribed for narcolepsy is a heavy duty sleeping medication, which to someone who doesn’t know much about narcolepsy would think is very very weird haha. But the truth is narcolepsy can actually cause intense insomnia at night and hypersomnia during the day (that is my experience at least). It is very difficult to express the intensity of exhaustion associated with narcolepsy to someone who hasn’t directly experienced it. If you haven’t already, I would definitely look deeper into possible narcolepsy or other sleeping disorders! Not to self diagnose but to maybe seek out answers and help :)

[@MakaylaGal]

I have narcolepsy and I used to have to take naps in the middle of the day. Sometimes I would have auditory and visual hallucinations during those naps. As an example I would hear my mom call out my name and I would verbally respond “what?” Then I would pause and listen to what she had to say then I would verbally respond “ok”. Another time I saw my dog walk into my bedroom and get in bed with me. I physically moved over in my bed so my dog could have room. A few minutes later I woke all of the way up to see my dog was never in bed with me. I don’t take naps anymore because I hate hallucinating.

[@sl0ppyblojobzz]

“10 year delay on diagnosis of narcolepsy” For me, that’s right on the money. Symptoms started in early 2012…wasn’t properly diagnosed til mid-2021. 😢

[@jasonguthrie6083]

Absolutely positively true!!!

[@jasonguthrie6083]

I've had this since I was a teenager and was never properly diagnosed

[@catm590]

Damn I feel like my whole life I’ve been diagnosed with sooo many things like add, anxiety, depression, insomnia, etc. and have been put on so many medications and nothing ever worked...but every single narcolepsy symptom they talked about sounds exactly like how I am and how people describe me. :/ too bad I can’t do a sleep study..the sleep specialists want $10,000 to do studies on me because they don’t believe me when I tell them my symptoms like uhhh ok yeah like why would I lie about horrible debilitating sleep issues that practically harm my every day activities?!

[@matthewthetiger1649]

Cat M this is why i hate america ur better of flying to a country with free medical care cheaper.

[@skyraven89]

I saw a neurologist a few weeks ago and when I told him about my symptoms and how hard it is to deal with it he literally made fun of me and called me lazy.

[@daughteroftheking2344]

That sucks! Get a second opinion and check into what your insurance covers. You may have to travel to find a decent sleep specialist, but you’ll feel better once you have that diagnosis.

[@daughteroftheking2344]

@Sky Raven, what a jerk! He’s probably super type A, sleeps like 5 hours a night, and looks down on people who need more. Find a sleep specialist!

[@emanuelstude4912]

@@matthewthetiger1649 yeah im lucky i live in sweden. The first doctor i talked to didnt even think of narcolepsy and when i told her what i suspected she brushed it off. But she still sent me to a sleep doctor who instantly thought of narcolepsy. Im going to do mslt soon.

[@kailakruger7685]

I have Excessive Adult Day time Sleepiness and Insmonia. I get exjausted but cannot sleep some days and others I just cannot stay awake.

[@jenraider72]

I cannot believe I'm thinking this but I may actually have this. Or then again probably not; I don't think I have all the telltale symptoms. Anyway, here's my trainwreck: A chief complaint I expressed to my current doctor when I first saw him 3 years ago was the fact that I am ALWAYS tired during the day and felt I could fall asleep pretty much anywhere, even in extremely noisy enviornments. Speaking of noise, I really hate sudden loud noises or being startled which seems to happen very easily lately. My daughter always just pushes my bedroom door open and barges in and every damn time it startles me and I get that feeling in my stomach. I fall asleep sitting in the waiting room; I fall asleep while sitting up at the computer or playing guitar, but I wake up with a snap when I do so sitting up , vs sitting in a chair, where I could sleep longer. That's why I think that maybe I do not have it. The Dr asked about nighttime sleeping and I explained how it doesn't make sense, because I'm so tired all day, yet I never seem to get fluid periods of sleep. I always, always wake up for no reason and often see the time & realize I can't even get one complete hour without waking. Why? I do from time to time have sleep paralysis, but it's more than just being unable to move. It is terrifying. I get a feeling that someone/something is coming for me as I lay helpless; hard to explain. Another thing that points away from narcolepsy is I don't have the cataplexy they mention. The closest to that is just when I nod off and violently jerk my head up. I do get this thing a lot where I am awake or awake-ish and my whole body will just very suddenly and violently convulse to where my head shakes- everything just jerks, my legs/arms might actually flail out as well all at once in a sudden twitch. That happens often and with no warning and no one seems to know what I'm talking about when I try to describe it and ask if they too do that. I also get dreams that are very real and intense; I call them "movie dreams" because these dreams that I am in, are like action or horror movies. The worst are the frequent ones where I'm with a signifigant other doing mundane couple things and it always ends up being my late husband who died of cancer in 2014. He was 48 and I 41 at the time. A little while after waking up when I start recalling my last dream I realize it was him and then hate how real it felt since I'm now awake & know it wasn't real. That's also not narcolepsy related but I figure it has to do with sleep and if I can dream, then I must be getting good rem sleep, which I assume is the opposite for narcolepsy. I know I have depression too, (have not even tried to date since Rodney) and the doctor diagnosed that depression and low thyroid t-something level. I hardly eat and yet gained 30+ lbs in a short few months since late 2015. I used to gain some winter weight and always easily shed it but I can't now and it's all in my stomach mostly; arms bigger too. I go all day without eating or desire to eat and unfortunately then eat cereal or Ensures before bed. Only drink 24 oz coffee and maybe 8-12 oz of iced tea or lemonade per day. I have no appetite anymore and it sucks because I think the not eating is making weight gain worse. I'm also too lazy to bother cooking for myself. I just don't have the energy or desire. Oh and I eat cereal because it seems my body just craves sugar. I'm 5'8 and about 180lbs now. I was a more or less contant 150lbs before the sudden gain. dr has me on Zoloft, Levothyroxine and 30mg generic adderall 3 xs daily and Metformin although I don't think that's helping the weight. I can still fall asleep with adderall but have kept same dose for 2+ years & see no reason to increase it. Last week I slept for the entire day instead of ever getting up, save for waking a few times here and there, and then just stayed in bed sleeping/waking until next day so I in essence slept on/off for about 30 hours. I've done that before too; I don't bother taking any adderall and just try to keep sleeping because I never feel awake and my eyes just keep closing. I don't know what is wrong with me. I generally tend to just think that yes, I am depressed, but I'm also clearly lazy too because I'm so tired I just don't want to even get up out of bed each day, let alone the absolutely miserable, debilitating state of sleepiness I'm always in when I am actually up & out of bed. Sorry this is so long; guess I needed to vent & I don't talk to anyone else aside from my kids and a concert buddy- friend every couple of weeks. I'm too lazy to even look for texts or I'm sure I could be hanging out with her, the friend, more often. My fault, my doing. Oh yea, this has nothing to do with narcolepsy, just plain fun... So, I have a gutteral, physical reaction when I hear certain sounds, especially/mainly when they're coming from tv, radio etc. I get very angry and also feel a sense of desporation if I cannot mute/get away from the sound. A kind of heat starts to build from my stomach and my heart beats faster as the anger or rage if I can't stop it fast enough, builds. I often yell at the tv, saying, for example, "why? why? we can see that their washing their face! " when a scene from a movie/show includes the sound of running/splashing/dripping water or liquid. I also hate the sound of movie footsteps, horses' hooves clopping on dirt or pavement, keyboard typing and a few more sounds. I couldn't watch "You've Got Mail" yesterday because I kept diving for the remote to mute or lower volume to (1) just to avoid the constant exaggerated klacking keyboard sounds that are in so many scenes. There are other movies with a lot of scenes with water (ocean/lake/bathtub) that I can't fully enjoy watching either. My daughter thinks it's hilarious to watch me try to make nonsense sounds like, "la-la-la-la-la..." in a loud enough volume to drown out offending noises if I cannot escape them for whatever reason. My husband thought so too, and I know it seems absolutely insane but I can't help it, it just happens. Believe it or not, other than this shit, I'm a relatively normal female. With red hair... Could that be it? That darn recessive gene? Nah. Now I'm just grasping at genetic straws. Thanks for taking the time to read all of this. That's 5 minutes you'll never get back. As you were...

[@nunyabiznes3901]

Your symptoms actually do sound a lot like narcolepsy. If I am about to fall asleep, I get those involuntary movements...I believe they are called hypnic jerks. If I fight sleep, they will keep happening and it looks like I am having a seizure. You shouldn't be falling asleep on Adderall. I do, but I have narcolepsy. You should push for your doctor to order a sleep test. Hang in there. It is very depressing to sleep all the time and feel lazy without knowing why.

[@MinatheMenace]

I started exhibiting signs of narcolepsy in middle school. Didn't get officially diagnosed until I was 22.

[@SPISheste]

10 years??? What, I got diagnosed over the time span of 3 months, at a neurological ambulatory + sleep specialist

[@niamhlaste8972]

Tobias Trabjerg i understand where u come from cause I got diagnosed within 4-5 months but I actually had narcolepsy for 5 years before I was diagnosed

[@meerapande7513]

Tobias Trabjerg hi can u please tell mi from where you are and how u get diagnosis . how are you feeling now? does it really help ful . plese do reply .I am suffering from same ..i am from india.

[@meerapande7513]

Tobias Trabjerg Please do reply :-( waiting for ur positive reply

[@SPISheste]

I'm from Denmark, i was diagnosed through a couple of specialist doctors in a bigger city. They ran me through some tests to see my behaviour, sleep pattern etc. It's been 5 years since, so I've learned to cope with it. I take daily medicine which helps me from getting too tired and falling asleep randomly. I am way more positive about this "illness" than I was 2 years ago. The only real downside to everything is the amount of energy it takes to keep myself energized and happy. Once every 4 months I check in at the doctors to keep an eye on me. But yeah, I'm a lot more comfortable and happy now.

[@meerapande7513]

Tobias Trabjerg Thank you :-)😊

[@kynny4340]

I don't want to self diagnose myself, but I have been thinking that I have narcolepsy for a while. I try to go to sleep early at night to get a lot of rest, but I wake up as if I had stayed up until 4am, then throughout the day I experience usually around the middle of the day that I get severely tired where I just fall asleep while in the middle of reading or doing work. I try to sleep 8 hours, more, or less, but everytime I end up sleeping during the day multiple times and I can't help it. I try to drink cold water or sit up straight or dtand up but i still fall asleep. Another thing is that I can fall asleep pretty much anywhere; In church when the music is loudest, during writing, while talking I get confused with my words sometimes, I almost always fall asleep when traveling in vehicles, and I also experience total r.e.m. sleep during class, I can go the entire class alseep without knowing that i had fallen asleep.

[@madmancs8216]

Yep sounds about rite tool me a little over 10 years to get diagnosed

[@EdenAnarchy]

Honestly, cataplexy is the worst one for me. I have fallen and been injured more times than I can count. Any intense emotion does it to me. It can sometimes be the side of my face, but it’s usually in my hands/wrists.

[@Daily_Dose_of_Grass]

Why am i watching this im todally the oppisite of a narcolepsy, more of a moring person and i never go to sleep to much XD

[@somewhereupthere785]

The dreams wake you up at night.

[@channykhan1080]

I think I suffer with this.. all is true to myself but I didn't realise my hallucinations were a symptom as iv always done this from a young age. The rest has been in teens.

[@runlarryrun77]

The doctor I saw yesterday should watch this video. He had absolutely no idea about any of this & aggressively insisted that I don't have narcolepsy purely based on his wild misconceptions of what narcolepsy really is. When I told him I'd had sleep paralysis many times he just cut across me & almost shouted "That's not narcolepsy". I could have punched him.

[@t.h.8475]

Why are so many doctors like that? It's not just narcolepsy they do that with either.

[@rissagotvideos09]

pretty sure I have this? I fell asleep at work idk what to dooo?

[@libbysanders5551]

Hey I am 11and have Narcolepsy I was told I have Narcolepsy when I was 8 now I understand it but my friends and other people at school don’t and make fun of me people help me

[@julianclegg1922]

Try to find a club or society for people with the same or similar problems, so you won't be alone with it.

[@shell3334]

I have lived with it since I was around your age. I am 41 now. Wish I could tell you there was a way to fix yourself. You gotta be willing to joke about it yourself and it will help your friends deal with it. In my experience

[@pelondiaz8603]

I work the graveyard shift and sleep during the day.. so not sure.

[@ZombiBunni_]

I’m desperately trying to stay awake watching this lol.. I wish my doctor would help me already. I don’t have the accessory symptoms like cataplexy or the hallucinations (as much at least), but the exhaustion / inability to sleep at night / memory fog and loss / inability to take in info... and I took the test w a neurologist and I score as narcoleptic but they aren’t giving me “treatments” of any sort, just telling me to try my best to stick to a schedule :(

[@LisaLisa001]

Narcolepsy sucks. Diagnosed in April of 2000 and still have trouble finding the right doctor. I'm in Phoenix, AZ. Any recommendations?

[@cystarkman]

L K as a narcoleptic, unless you have cataplexy as well, why do you need a doctor? i found this video quite ignorant and the key detail which is also called orexin was glosses over - if you look into it pretty much tells you everything you need to know. doctors will only tell you to take a bunch of really heavy drugs to, like this doctor says “stop being inappropriate” and keep you reliant and paying them money! if you need to sleep, sleep. if it is in the middle of the day, do it. beside that, seriously look into the function of orexin - once you do you will realise a lot of the “inappropriate” behaviour can be sorted out, with diet.

[@LisaLisa001]

@@cystarkman yes, I do have cataplexy as well. I haven't been to a doctor for it since 2005, so I've been managing it just fine all this time without a doctor. From 2000-2005 I was a Guinea pig trying every medication out and keeping a detailed journal of it all. But the last year has been hell. It is affecting me far worse than what's been manageable on my own.

[@kRzlamchop]

I have all these symptoms dayum.

[@mustang19898]

Currently getting tested for narcolepsy and take stimulants during the day. I have every one of those symptoms.

[@Lilliaace]

Could cataplexy involve "word salad" or brain fog where it feels like mentally you know what words you're looking for but for whatever reason it's hard to say them? (Psychological barrier, other intense emotions like fear, dissociation, etc). I just got diagnosed and my doctor didn't mention at all cataplexy

[@MinatheMenace]

I was told by my neurologist that my narcolepsy can effect my ability to retain memory, so yeah I could see that. Not sure that would relate to cateplexy though

[@melanieperry8314]

No it just sounds like a micro sleep kicking sesson.

[@bonitamojica5254]

I like his tie 👍

[@frankiepierce6400]

I have narcolepsy with cataplexy. I was diagnosed at 32 after I fell asleep standing up while at work and a few weeks later, an episode of sleep paralysis frightened me so badly that I felt the need to see a physician. I’ve fallen asleep while driving,while working,while bathing. I was given Adderall XR (30mg) and it’s a life saver. I do have 2 questions though...within the last 3 years my memory has gotten so bad that people tease me about having alzheimer’s...and sometimes (approximately once a month) I smell campfire smoke that isn’t really there and it can last for days. My cognitive function has diminished greatly as well. Are these related to narcolepsy?

[@Paul-js1yq]

Frankie Pierce Narcolepsy causes my memory to be very bad.

[@jimihendrixx11]

I practice mindfulness and play brain games. To keep my mind sharp.

[@queenihilation]

I've been diagnosed narcolepsy and there's times I would forget too and feel like passing out and then I have the narcoleptic epsisodes and I'm 19 years old... So yeah definitely can be narcolepsy because its not far fetched

[@anthonypicciano7934]

I have horrible memory and 'brain farts' all the time during back tasks like taking inventory or reading signs I'm 19 and was diagnosed with narcolepsy from sleep studies at a specialist Idk if it's the cause of my other issues- just wanted to put that out there

[@GiuseppeSimonetti]

Frankie Pierce I have Narcolapsy and Cataplexy. Nobody I know understands what I go through

[@dawnr7798]

I hate the term excessive daytime sleepiness. It’s more than that. You feel tired ues. But your brain feels like it’s not awake, like there’s a fog over it and u can’t break thru. Focusing is difficult. You sorta feel like you are in a dream but yet you are awake. Reality feels different. So yeah, it’s more than just simple “excessive daytime sleepiness.”

[@debbiecooper1677]

I have narcolepsy. some days are better then others. If it wasn't for my meds I don't know what I would do . But I have the best sleep Doctor

[@MasteIsIllmatic]

Debbie Cooper Seriously, I was hesitant about meds but they made a huge difference! What are you prescribed?

[@debbiecooper1677]

nuvigil and adderall

[@GiuseppeSimonetti]

Debbie Cooper adderall doesn't work for me, I want to try nuvigil again but my insurance doesn't think Narcolapsy is important and don't think I need it.

[@channykhan1080]

What medication does your Dr subscribe to you for your condition.

[@Katwarfield]

I think it slips when they prescribe the SSRI..and then they say AHA your walking better so it must be mental health . My neurologist was typing conversion disorder and I said " You're RIGHT because I fall down if I laugh too hard or yell. And just that after spinal taps, imaging, hospital admissions and on and on. And if they had just asked that one question When I was an infant they used phenobarb in my bottle to get me to sleep through the night

[@jasonguthrie6083]

I can't stay awake for anything during the day at work especially if I'm sitting in front of a screen

[@dudleygt3327]

I get a full 8 hours of sleep at night during the day around 2pm even on days off I get a immense warmth shoot from my head and spread out all through my back then my arms and legs this warmth makes me get weak. I remember one time walking falling asleep I imagined a wall was rite in front of me tried to avoid it bumped into a guy with groceries then I tripped when they helped me up and sat me on a bench I knocked out lmfao I was taken to hospital where I woke up 6 hours later.

[@danktankdragkings7117]

I'm thinking I'm narcoleptic but my neurologist thinks it's psychological and my psychiatrist thinks it's a neurological but I'm having blackout spells much like how people describe their Ambien trips where I'm conscious I'm doing logical things I can do math I've called my sister told her I'm having a seizure and told her I'd wake up in a couple minutes I don't remember calling her but she showed up and told me what happened. It's been two years of these spells nothing I have tried has helped and they seem to be triggered by my brain going quiet seems to happen in grocery stores most often when my brain goes on quote on quote autopilot

[@rodrod139]

2:37

[@taytay1910]

Can someone help Because I wanna live my life without narcolepsy

[@taylorman4080]

Life of a narcoleptic goes like this.... Wake up in the morning, take Adderall, eat a quick breakfast, take a shower, change clothes, brush teeth, by this time you are ready for a good 30 minute nap before you leave for work. And most likely that nap will just be you laying in bed closing your eyes and not napping or sleeping at all because the Adderall you took won't let your mind enter sleep. If you don't pop that 20mg or so of Adderall right away you will feel like a depraved drug addict🥴. Not all people with narcolepsy take Adderall some take just Xyrem or both.

[@janishall7625]

This describes me perfectly.

[@jerrellmelton9266]

Yup. This describes my routine. Adderall first of the morning to get myself going. In need of a quick nap close to noon, which doesn’t happen lots of times. you can still feel the sleep behind your eyes but the medicine is wiring you awake

[@ashleyburgess]

15 years for my diagnosis!

[@Jesper007]

9/10 years for me

[@ljay7106]

I've all that and it's ruined my life. Sometimes it's bad ur talking nxt thing ur out cold or u are always tired and if ur stressed we'll say good night.. Hate it

[@hermanshankovitz2700]

It completely ruined my high school career.

[@taytay1910]

I don't have narcolepsy but I'm scared I might have it I just have trouble sleeping ....it started when my Gf broke up with me....

[@queenihilation]

wavy banks. Well if you're grieving about this still and thats when it all started, I wouldn't call that narcolepsy....you may just be depressed with insomnia. Trust me I have those too. You may not be super sad or anything but you dont have to be to be depressed either or you may just be stressed.

[@caziko48]

Each article I have read about Narcolepsy tells me that one has short bursts of sleep like seconds or a few minutes. Can anyone tell me for how long they sleep. My daughter can sleep for days. She is a recovered addict and now takes quite a few prescribed meds. I have accused her of overdosing on too many pills as she looks like she is overdosed when she passes out. Am I wrong ???? Could it be Narcolepsy?? Would love to hear from someone who is suffering from this.

[@reeigan]

Hi there! I have type 2 narcolepsy and i can sympathize with the sleeping for days thing haha. I’m not sure about the recovered addict part, but i do know that narcolepsy can be triggered by something such as a flu shot. I’ve slept from 9pm-5pm the next day before. Not telling you how to parent and I do not know you and your daughters situation by any means, but perhaps looking more into sleep disorders could be helpful before accusing! (I do not mean to sound rude or disrespectful or anything, but its hard to display or interpret tone over text haha!) People with the condition are very often accused of being lazy etc. and it can be incredibly frustrating to live with a condition that has so many misconceptions. Best wishes to you two!!

[@neverloseyourvoice5263]

Idiopathic hypersomnia or Kelvin levin.

[@c11xitlaly]

Sleep paralysis is the worst cause I end up feeling more tired and worn down

[@MrPolinchhay]

200,000?

[@joeycabanas6564]

Video games that are stimulating help alot

[@MakaylaGal]

I have the opposite response. If I play video games while I’m trying to snap out of a sleep attack, it makes it so much harder for me to fight falling asleep.

[@seancoulter8743]

I was born with narcolepsy but did not know till i was 5 years old i dont like this doc at all im now 36 years old and im also a type 1 diabitc for 22 years now if i was given a table with a cure for narcolepsy and a cure for diabetes i would take the cure for narcolepsy in a heart beat becuse its a pain in the ass if i cant get my meds then i cant drive i cant walk i cant work i cant do a damn thing and im out cold for 20-30 min flat

[@ladrennasaddler8863]

Wtf is wrong with the other Drs Body Language

[@babywhisperer8223]

Interestingly, this is listed as a possible side effect from vaccines. My friends daughter got this after her hpv vaccine. Wondering if anyone else experienced this as well..

[@jaycroix8729]

Maybe they just evolved into being nocturnal.