What is Narcolepsy?
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- เผยแพร่เมื่อ 15 ต.ค. 2024
- Dr. Tom Scammell, Professor of Neurology at Harvard Medical School and a Sleep Medicine specialist provides an overview of narcolepsy. He discusses the symptoms of the disorder and why it occurs using animated illustrations of brain. He also provides insight into areas of research that may lead to better treatment for narcolepsy.
Version that includes an audio-description: • What is Narcolepsy? (w...
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I can sleep through the night but it’s never refreshing. Always exhausted. Going on 7 years now.
Annie I was the same for 2 years. Anxiety medicine helped me
If you snore or get headaches while sleeping or when first waking up I suggest getting checked for sleep apnea, of you haven't already. I recommend an in lab sleep study over a home study.
Please keep track of your sleep schedule and talk to your doctor about your concerns. Ask to be referred to see a sleep specialist. This may be Idiopathic Hypersomnia or any other rare sleep disorder which means your symptoms may be on a steady or gradual incline.
Check your blood count, make sure you’re not anemic. Meditate as often as possible and eat healthily
@@astartecolin I did a home study... why do you recommend a lab study?
He....he just pulled a brain out of a freaking bucket like it was Kentucky Fried Chicken
Information junkie(o_o)(._.)
LMAO YO im rolling
It’s a mood
@@juliem5008 be my best friend
Tiffany Kautz you just had to ask honestly
I knew someone who died from this.. not from the disease itself but from an accident he drove home put his car in the garage closed the garage door fell asleep forgot to turn the car off breathed in the car fumes and died. He was only 26 years old and it was this disease because when you would just have a conversation with him he would just randomly fall asleep then wake up again later.
Ry Guy Ohmygoodness. I’m so sorry. Blessings.
I'm sorry for your lost. I have a friend who does that same thing also.
Omg i hope u are getting over ur lost my prayers for those who knew him
My uncle did that
Don’t they recommend that people with narcolepsy don’t drive? There’s a singer in my country that everyone knows. We see him walking through town every day after work. My parents told me he’s got narcolepsy so he‘s got to walk or he’ll fall asleep behind the wheel
I have narcolepsy with cataplexy, and this is by far the best explanation of narcolepsy I've seen to date. Raising Narcolepsy & Cataplexy Awareness, Thank You!
I feel your pain, this shit sucks
Good news for all of you
I have this problem previously
I lost my friends, family about this problem
But one day a great person gives solution for this
That is eatable lime
Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
@@chandrasekhar-jf8fc
Then you didn't have narcolepsy and/or cataplexy! You can keep your snake oil remedies to yourself, because this is a rare and serious disease for too many of us, and people like you need to get a soul, a conscience and a life and stop preying on people with real difficulties and disabilities!!! I highly doubt edible lime and a pinch of buttermilk can fix a lack of the brain chemical called hypocretin (also known as orexin), which regulates sleep, and people with narcolepsy don't have or have too little of. The deficiency is thought to be the result of the immune system mistakenly attacking and damaging the parts of the brain that produce hypocretin, so yeah, fix that!!!
@Brad Johnson
I agree it does blow, I have narcolepsy with cataplexy, my mother has it, my youngest son has it, and my aunt (mother's sister) has narcolepsy without cataplexy too.
Me as well
I was diagnosed with narcolepsy a few years ago. I knew I had it even way back in high school. I can't seem to find a Dr around my area that seems to know how to treat it. Some meds work for a whike and then they quit. I'm about to the point that I'd jump off a bridge if there was one close enough to my area. Shit gets old. If you don't have it, feel blessed that you don't have to deal with feeling tired and wanting to sleep all of the time.
1Cardplayer Blessings. You aren’t alone. Please remember that.
Was diagnosed at 15. I know how you feel.
There is an online community if I'm not mistaken. It could help. To talk to someone, or Even someone living the same.
I never understood why i had always felt so tired snd sleepy throughout daytime. I always felt i couldn't stay awake. And its been happening on and off. I thought it was just my bad sleeping patterns at night, but even when i managed to get decent sleep, i still felt exhausted during the day. And when i would sleep i had vivid dreams. Now i think i may have narcolepsy.
@@armandozertuche4054 go see a sleep specialist. They will find out what you have and be able to help. There's many sleep problems. Which ever one it is they will find it.
He just pulled half a brain out of a bucket... In a way like he has done it a hundred times before... Cool.
I mean it's his major, so he IS supposed to do that HUNDRED times..😳
Im with you i totally lol 😆 I rewind video to show my husband, like "this guy just pulled out a brain!" So funny, silly scientists
I lowkey feel like I have this, I work in a office and I’m checking paperwork and writing and all of a sudden I start to fall asleep and my hand goes numb and my body tips forward then I snapped out of my sleepyness like I wasn’t just falling asleep.
I’m always so damn tired and I sleep a full night and this morning I woke up like if I was never asleep, just got up.
I always feel tired, I have to go to the restroom and take a nap.
Sounds like me. I will nod off in the middle of a sentence and my whole body slumps over slowly. I have fallen many times in the past due to this . So .... good thing you're sitting mostly when it happens at work right? Lol trying to find a bright side, it really is difficult to live with, I understand that one for sure.
I got narcolepsy and thats what it is like for me thats why I don’t have an office job I had before but would fall asleep every few hours. I do better now I take a nap during the day and have special diet etc
ChubbyBunny Rivera thats what happened to me I couldnt stay away during my office job. I switched to working at a nursing home and work mostly nights which I am more awake then during the day. I stay on my feet the whole day I take 30 mins off to eat and usually even then talk to my co workers and walk around so I avoid falling asleep. I eat s very clean diet to avoid bloodsugar dips which are notorious for making people sleepy. I also drink atleast 6 cups of tea a day if you like coffee drink that.
You probably do! I have it and that sounds similar. I would see a sleep specialist if you're able to.
I have type 2 narcolepsy and during high school I used to go to the restroom all the time just to sleep, sometimes I’d be in there for like 4 hours. It’s a terrible debilitating disorder, its a bummer there are so many misconceptions around it
My now 15 yr old was turned away last year after 2 yrs of us baffled, thiking she had depression, anxiety, schizophrenia (hallucinations/voices/not in the world-feelings) and then the cataplexy started, at school when she was bullied...her sleepiness in the day was put to not sleeping well at night and depressed lethargy. The year before it all began? at 11, riding, basketball at 7:30 AM, straight A's, engaged in life...she never lost her strength of character and told us she'd always had the sleep paralysis and hallucination-feeling/vivid dreams or always feeling in a dreamlike state - ANYWAY. I felt compelled to write here because we are in Canada, and the SLEEP CLINIC at the large Science driven University (World Class btw) turned her away at 14, she was suffering greatly, had ALL symptoms off the charts - they had Narcolepsy as one of their conditions studies at this UNIVERSITY CLINIC and said, "We don't accept anyone for treatment until the age of 19" - I told them that ALL research says that it onsets between 10 and 20 yrs and - they won't help TEENAGERS?! It is already the WORST time of life to have anything that effects your self-esteem and social world and they won't treat TEENAGERS for an Onset Teenage Disease. INCREDIBLE. We went to the Children's Hospital Respiratory Clinic and they are now going to do Sleep Testing on her, we lucked out with a young Dr. who is keen and has not yet had a case of Narcolepsy so he seemed very interested...initial symptom testing OFF THE CHARTS as we knew. This is current and happening November this year. I worry about what medications they are going to suggest so forth...I am SO NOT into that, but she says, ANYTHING to help her...I understand her pain. She LOVES school and is super bright, still doing well...but misses many days. Thanks for letting me rant, as we still don't know if they know anything about it really and what our treatment would be. If anyone from Harvard wants to study my kid...we'll fly to you. LOL ;)
I went through something very similar this last year, being very sleepy and even aggressive because of it.(my grades dropped significantly too) Eventually I had cataplexy and my parents tried to get me tested but I got put on a very long wait list. I had to wait almost 9 months for a study. It's very hard for doctors to be able to monitor something like this for 2 days and so they seem to prioritize people being tested for just one night... I finally got tested and immediately diagnosed afterwards. But just as the diagnosis is a long process so is medication. I've tried a lot of different stuff and none of it will ever completely work but I promise that they will help at least a bit (especially with cataplexy and sleep hallucinations). Make sure you get your child on a special 504 school plan so teachers are forced to accommodate and try to understand what's happening with them. And I strongly recommend Prozac for the cataplexy and then modafinil in the mornings and Ritalin at lunch time(if needed) for helping them stay awake! Good luck, remember to stay patient!
Could you imagine living your whole life just to die and your brain show up in a video for a split second before it's replaced by a simulation?
Seriously!! They cut out the anatomy demo😭😭😭
better than not being shown off at all
Most likely longer than most people’s brains will be shown off on camera.
You must be super high on some good weed
I almost feel asleep while watching the video...
I did three times
I Diagnose you bored
Al Castill r/wooosh
This sounds like a meme
Great info, but Same here!!!!!
An excellent overview of a condition which can be totally debilitating and has pretty much made my life a living hell.
I'm sorry...
Same. I cried watching this knowing that I've lived with all of this since I was 9. I'm 17 now and It's gotten so much worse.
I COMPLETELY UNDERSTAND...I also am working on the cataplexy part... partially fixed. If I can help you with anything, seriously let me know. It is a pure hell disease that few get... but Everyone needs a little help now and then. ✌️
@@thememingoflife5452
I'm 57 ... It's not fun, as you already know. But, you can do it. Some thoughts, advice, if I may .. Find a good Dr. One that understands your diagnosis. The medication that works, or doesn't for YOU. Find a friend, agency ? that will help. Caring Coalition may help pay for the expensive medications, they approved Xyrem for me, ? Few thousand dollars a month. There has to be more.
Don't give up on YOUR Dreams. There's research studies that might help too. I survived with Ritalin, Modafinal, Coffee and standing up, to keep my legs strong.
If someone tells you that it gets better with age. Probably NOT True. The good news is People should be less ignorant about it. I had better "luck'' years ago when I fasted. My brother, father, grandfather and I had, have it. It's BRUTAL...BUT... Find what you love, your passion and don't take any crap.
And if you need a letter for something. I would write one, as goofy as it may sound. I am seriously at 85-95% on the Cataplexy side, truly a breakthrough, real recent, so working with it... not Drs. My research and experience, experimenting.
I have other injuries for Disability. But, Narcolepsy is bigger reason for not returning to work.
Something tells me that you may have been given Other Skills, Talents or ?? To even it out.
✌️🐕🐾🐾🐾🐾💪🦾💪🦾💪🦾💪💞
@@thememingoflife5452 I feel so sorry for you ,I m a distance healer I'll try to heal some of it , if you need help ,, incase it's getting worse , maybe it won't get too bad, n you feel some relief , i pray this thing end up and nobody have to suffer it .
I've had this since age 3 from a tonsillitis infection. I wish Mom had taken me to a doctor when my first grade teacher let her know I seemed tired all the time. I didn't find out until this year at age 59. It's too late for me to enjoy this life but hopefully I can enjoy the afterlife!!
Veda Slayton hi, just wondering if you can tell me how it was connected to your tonsillitis. Thanks
I Found out at 38, hopefully the next generation can find a cure or better treatment then Ambien at night and a pill during the day to stay awake ❤️
@@kittyskeletongamer4191 I’m curious about this as well. My understanding is that narcolepsy, as a neurological disorder, is not associated with infections. An infection resulting in excessive fatigue would lead me to suspect something like Epstein-Barr instead.
I also got narcolepsy after having tonsillitis (strep throat).
@@sleepycassie0125 I'm sorry, as someone who has narcolepsy I'm just confused. you cannot get narcolepsy from tonsillitis. car accident that left you brain damage yeah you could get narcolepsy from that but not tonsillitis
I remember the time when teachers used to scold me bcz I always look sleepy in class. And I sometimes slept in class. They accused me taking drug. I was so sad. But my friends know my illness and keep supporting me till this day
i have cataplexy with narcolepsy and everything you said, every little detail was what’s happening to me and i’m only 17 and i have been experiencing this since i was about 7-8 years old.☹️
I'm in the same boat. It stinks, but I've been blessed with medication that has made my life easier!
Thank you very much for this series of videos about narcolepsy. It's very painful to live with that and to take so long to have a diagnosis. It's nice to know there're doctors researching, even if in Brazil we don't have anything like that.
Only reason I am here is because I am so into neuroscience and studying neurological disorders. Cataplexy sounds horrifying, I have had sleep paralysis a few times and it's awful.
cataplexy is very horrifying.. I get it every day... never fully fell out... but I've had my knees buckle and get extremely dizzy really fast from simply just laughing....... I have narcolepsy, cataplexy, sleep apnea and other things to top it off with :-(
@@sheryljennings49 omg i feel bad for yall i only have narcolepsy
My last sleep paralysis. I wake up frozen and can’t move. Then an invisible man touches my left shoulder as I’m lying on my right side and he speaks in a terrifying raspy voice. Lol scared the crap out of me :)
@@Puffster Oh that's just Jeb, he visits all of us. You'll get use to it
@@davidharris3028 he’s an asshole. I used to have paralysis all the time, haven’t felt Jeb in about 10 years, but now the cataplexy has kicked in so that’s great.
So true... always in a state of in between.
Trying to figure out if something happened or was it a dream? Deja vu happens to me as well. I know what’s going to happen before it does. Only by a few minutes, but long enough to realize lucid dreaming, that really helps with the nightmares.
@@Yarkietive noticed I can turn my nightmares into something like lucid dreaming (I'm still stuck in the terror but I know it's a dream unlike my usual sleep hallucinations that feel 100% real) bc I trained my dog to nudge me, lay on me, and get up in my face if I am screaming or crying in my sleep. When he Nudges me he let's me know I'm safe and my dream can't hurt me even though im stuck in a crazy vivid dream. Also the night terror or nightmare ends faster when pup helps me and the state of anxiety after waking ends much faster too. When we sleep at night my dog and I don't touch or snuggle (he likes his space and we get plenty of snuggles in at other times) but he sleeps on a large pillow right next to my head and shoulders so if i start flailing around or yelling, moaning,talking or crying he knows what's up and comes over and puts pressure on me. It sounds silly but it is very helpful, it doesn't work when a family member tries to wake me bc I usually just incorporate reality into the dream, but my dogs help works.
I've had sleep paralysis episodes where I was stuck in place but still sobbing and pup still can tell something is wrong and checks on me which is super helpful.
A lot of this happened naturally but I did do intense training with him, obedience and tricks his entire life. I also bought a few books on training service dogs and used those techniques to teach him things like walking perfectly in step with me which means he has to check my body language and hand signals every few seconds which helped us learn to be very in tune with each other and work together. So our regular training taught him to be very aware of my actions and in sync with them and then when he would help me during an episode I would praise and encourage him afterwards.
It's honestly a huge help.
Thank you for this. I was diagnosed a few years ago, and I never quite understood the neuroscience behind it. They figured I've had it 10+ years, just misunderstood as a lazy teenager. Some sort of therapy for the dying neurons would be amazing as to get off the stimulants. Adderall and Provigil is good for the sleepiness and other symptoms, but a cure would be heavenly
I awake tired, go through the day tired, go to bed tired, and it just goes on this way... Every second of every day I am tired. I can't do anything around the house without falling asleep. At work, having my hours dramatically reduced is the only thing that's made a decent worker out of me. I look at the rest of humanity and marvel at how the Hell they have the energy to do what they do.
Don't put yourself down, I have narcolepsy too and get it's hard. But I remember Winston Churchill and Harriet Tubman, they had narcolepsy and look what they accomplished. I know this disease suck major *ASS* but you're not alone.
If you don't have Narcolepsy you carnt begin to understand what its like.
I got Diagnosed this year and my life is slowly getting back on track but last year my whole life was wrecked from work to family to social Narcolepsy caused me a world of shit got the sack from many work places to start off with I was trying so hard but the tirdeness is unbearable its not just like you yawn and could go to sleep when these attacks happen your brains shutting down for sleep regardless of where you are and what you are doing, as this happens I get hallucinations which can look very real and in a public place this causes embarrassment because my automatic reaction to the hallucinations you carnt tell if there hallucinations or not. The sleep paralysis is the most frightening thing I have ever experienced I used to get it every night maybe 2-3 times, Just imagine getting in bed then within a few minuites opening your eyes and thinking somethings not right you try to move but nothing happens then out of the corner off your eye you see a dark shadow which all off a sudden jolts into plain view you see i and sense its evilness it leans towards you and wraps its hand around your neck you can feel its sharp fingernails digging in you smell its foul odour and its weigh5 crushing your chest struggling to catch your breath let me tell you know and im not the kind of person who jumps at a horror film but sleep paralysis is something I never ever want to experience again. Then on top of all this your constantly worrying about the cataplexy which caused me to socially isolate myself and become a recluse almost getting diagnosed with schizophrenia luckily enough my GP recognised the symptoms and I was finally put in the right direction.
Im taking Venflaxine 80mg twice a day and they have been great my lifes starting up again just waiting to start o stimulants in july then I can start working again :D
P.s. Anyone who thinks they may have Narcolepsy or are undiagnosed go straight to the GP it wont get better just worst you dont realise how bad youve been feeling until you start on the medication and start feeling better and its tough yeah the tirdeness is a killer but the sooner you get it sorted the better :)
+Elo Him I'm sorry you have to deal with narcolepsy. I really wish they could find a cure for this condition (disease?). I hope that your life gets back on track and wish you the best of luck in your future. I don't have narcolepsy, but I've experienced the random paralysis when I used to have seizures as a kid. It is very scary and terrifying when you can see and understand the world around you, but you can't talk or move or do anything. It only happened to me for 10 years, but that was enough to know I'd never want to have it happen again. Here's to hoping that they can get rid of Narcolepsy/Cataplexy/Sleep Paralysis someday.
Auyoko i have found a person like me.. let me tell you my story. i injured my foot and it healed whatever i had to stop doing sports. it was all good but then i was getting tired a lot.. i was getting lots of pains in my legs and my arms. my mom took me for blood work and they said my thryroid was up a little. put me on medicine, did absolutely NOTHING. took me for blood work again, nothing. my mom thought maybe fibromyalgia or lupus whatever. went to a rheumatologist and she said that i basically needed a psychologist. started my counseling. diagnosed with depression, anxiety, and ocd. but still had aches and tiredness.. i was missing a lott of school. my mom was upset. every time i was picked up from school i cried. i stopped doing gym and fell asleep in class everyday. my mom was very concerned. i also did soccer and every time i came home i would cry for an hour about how tired i am and how painful it is. my mom had an idea of maybe it was neurological. went to a neurologist and said to do physical therapy and if that doesnt work we will do other testing. (i forgot to say i took 2 eeg’s and they thought i had epilepsy) but anyways, physical therapy did nothing for me. then talked about genetics because my dad has narcolepsy and so do my 2 sisters and my brother. said maybe we should do a sleep study. had to keep rescheduling due to rain and snow. but finally went, was so uncomfortable.. i went into REM almost every time i fell asleep. results!! i definitely had narcolepsy (severe) and sleep apnea (very mild also had it when i was a baby) and restless leg and arm syndrome (also mild nothing to worry about) wow. shocked. everyone so happy they found an answer!! started my medicine. felt really energetic and started feeling a little better. stopped working and then put to a whole pill. here we are today. whole pill isnt doing so well for me, still going to my peychologist, still have depression, anxiety, ocd. mom is starting to wonder if i have fibromyalgia because she has it. and theres my story. i hope i can do something about my aches and pains. as i am only 11 (almost 12) and already dealing with all of this :/
If Dr. Tom Scammell taught me math I would be a totally different person today.....Amazing teacher!!
Do I have narcolepsy? I'm constantly tired, have slept 12+ hours a day since I was about 11 or 12, and do not sleep well at night at all. I roll constantly and wake up extremely uncomfortable 8-10 times a night.
If you actually let me sleep I'll sleep about 15 hours in a row, then I'll be asleep again in 5 hours or so.
Try to reduce the time you sleep to 8 hours. Set an alarm clock and train yourself to sleep around 8 hours a day, no matter what. When going to bed I would recommend you to start a little meditation to fall asleep. Just try not to think of anything, no thoughts. Keeping thoughts from popping in is difficult at first, but you'll get it. This would help clear and relax your mind to the state where you would fall asleep peacefully.
I am no expert, this is only my opinion. If you want an expert opinion, speak to a doctor.
I have the same but I'm 14 and I'm always very tired and I could sleep all day a couple of times I have fallen when I'm hyper also I have adhd so I get angrey and hyper very easly
its a simple sleep study.... you could have narcolepsy or hypersomnia.... a sleep study would rule it out...
It's called being a teenager
@@foodafen6367 I don’t know if you meant to be reassuring or dismissive, but wish to say that the behavior of the OP is unusual, even for an adolescent, and addressing health concerns is better than ignoring them.
I think I was misdiagnosed in 1993 with ADD. They put me on Dexidrine Spanule (amphetamines), 15 mgs pills, taken 3 times a day plus I drink coffee and I STILL operate slowly and I STILL can fall asleep after being up for the day after a couple of hours. Sometimes I feel like I'm sleep walking in public. It really sucks.
Ok I’m 18 now. I have been living with this for 2,5 years now.
5-15 years is sooner than I expected, so I’m counting on you doc.
Good news for all of you
I have this problem previously
I lost my friends, family about this problem
But one day a great person gives solution for this
That is eatable lime
Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
@@chandrasekhar-jf8fc please explain to me how Lime and buttermilk help with restoring Hypocretin cells that the body no longer has nor produces
@@claracatlady9844 narcolepsy is not a disease or illness or disorder
It's one type of alkaline Deficiency
That's very rich in eatable lime
So try it
@@chandrasekhar-jf8fc yeah I’m sorry you have absolutely no fucking clue what you are talking about. Narcolepsy is a chronic autoimmune disorder meaning, for some reason your body attacked the cells that produce Hypocretin and the absence of Hypocretin is what causes Narcolepsy, since Hypocretin is what regulates your wake sleep cycle (among other things). Hypocretin is a hormone that is produced by the body and can’t be taken orally and isn’t found in any food (duh it’s a hormone).
Please stop spitting bullshit on the internet about medical conditions you have no clue of. It is not helpful to the people affected by it and only results in more misinformation.
@@chandrasekhar-jf8fc It's like you just skipped the video and decided to comment. Usually I'd just ignore misinformed comments like this but you already had the opportunity in this very video to see how wrong you are. Narcolepsy doesn't have a cure and it's fucking hell to live it. To claim it's not even an actual disorder and just an "alkaline" deficiency is harmful and overall just extremely disrespectful for the people having to experience this. It reminds me of my grandmother who doesn't believe in anything that isn't cancer, and has told me so many times that I'm just "not getting enough vitamins". Well holy shit! You must be right! Better go tell all those doctors that haven't considered LIME JUICE AND VITAMINS for the past 100 years!
Seriously. It's just exhausting and hurtful and it's not helpful at all. Please stop recommendeding home remedies for neurological disorders. If you really needed a reason? I eat limes most days of the week, fresh lime juice is one of my favourite things to add to foods and drinks. I still struggle with narcolepsy, and no, the limes have not made it better. So if science wasn't good enough, then there's your reason. It unfortunately, clearly, doesn't work.
This video is almost 10 years old... any updates on this research?
I was diagnosed with Narcolepsy without cataplexy as a child. Now years later over 50 I have been diagnosed again with it. I felt like without the medication I missed so much that I slept through. So many times I felt I wanted to do things but couldn't get out of bed or just wanted to sleep. I wasn't depressed. So, I had a sleep study done and now I am on a new treatment. I believe it will help and they the doctors understand so much more than they did in the 70's.
See i can fall asleep anywhere and i don't feel fully awake so like when i’m working i’m still tired and i fall asleep. During the day when i come home I immediately fall asleep and i don’t know why so I'm trying to figure it out why I'm falling asleep a lot.
I keep falling asleep before the video is over.
Great narration; this guy knows his stuff.
I think i have this. I fall asleep suddenly and at random times.. Like at the library while reading or on computer and watching tv. Even once outside on my porch. And outside my job once. Its dangerous and i wake up confused most of the time.
Could be something else maybe? I experience daytime sleepiness, sleep walking, sleep paralysis..etc. Do you suffer any of those?
I’m undiagnosed narcoleptic. I’m not sure about cataplexy but I have experienced sleep paralysis with hallucinations, sleep walking(not as much now), falling asleep while walking or standing. It’s hard or impossible to stay up all day without a nap. The weirdest thing I get sometimes is feeling sleep paralysis trying to kick in while laying down awake, that’s a tough thing to fight.
Most of the people have experienced a sleep paralysis and me. It's really scary, never open ur eyes
Thank you for this video, I have been living with this for a couple years now and it is so limiting. I am happy more people will find out about this terrible condition and will hopefuklkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkk
Hello y'all! I got my diagnosis the same year this video was released, I was 12. Now in 2022 I started uni and can say it's pretty difficult and challenging to maintain study and free time. Days are long and evenings are spent resting. Probably need to upgrade my meds to a higher dose. Wish you all the best and strength 💪🏻!
Hei sweety, how they made your diagnosise offical? Do you also Have cataplexy? Gosh i cant wait to Have neurologist, sometimes i cant move, and have to stoped with the job..take care**
wow I fell in love while listening to his calming voice
I have to concentrate on not falling asleep during the day, i have missed over 30 class sessions in online school just because i fall asleep randomly, i have not been medically diagnosed of narcolepsy. I am too scared to go to a doctor or tell my mom that i am having symptoms of narcolepsy through out the day.
Did you end you telling anyone?
HERE FROM THE HORROR AU AND IM SCARED
Can you explain to me lol, I’m an army as well but I don’t get it
what?
Why does narcoleps scare you-
One of the most common sleep disorders? I disagree. Many other sleep disorder effect more then 1 in every 2000 people.
I agree. Insomnia is a lot rarer. It affects more than 1 out of 2000
So I'm being tested for narcolepsy and sleep apnea because I haven't gone one day throughout highschool without falling asleep in at least two out of my five classes, I can't wake up once I'm asleep (my boyfriend is able to throw me over his shoulder and toss me into bed without me even stirring), I make these weird "putt" noises in my sleep and all of a sudden stops for 30+ seconds and then with a short gasp it starts again! when I do wake up enough in the morning to be in a light sleep I have vivid dreams of me getting up and making my bed, only to find out that I've slept in and my beds still a mess, and to top it off both my grandmothers and grandfathers have had narcolepsy, my dad's father had sleep apnea and so does my father. I can't wait for my test because I'm honestly sick of putting up with this...
Kylie Anne how were your results?
Emily Joy it turns out I have sleep apnea, on the "mild-severe" scale, my number was 72 lol
Where are my fellow Narcoleptics at?
I’m basically a textbook case of Narcolepsy with Cataplexy
Here I ammm
hello hello
*SUP*
I have Narcolepsy and it’s not really easy to live with I hope people stop making fun of it.
I like to join in club I'm a narcolepsy catalepsy patient to but in addition of that I'm suffering from sleep apnea too
don't know whether I'm going to die cuz of narcolepsy while I'm bathing or driving or I die with sleep apnea sigh ......
Oh shit, sorry you guys I'm narcoleptic
Woah. Just realized my brain is learning about itself.
I was diagnosed at the age of 7 every time it gets quiet I would fall the sleep plus I had canteplexy but now I’m a adult through the years it have improved tremendously; I was told I would never be able to hold on to a steady job or drive that just how bad my symptoms was but always spoke god and life over my self
I’ve been struggling with these symptoms for the past year or two and it keeps getting worse. I keep hoping it isn’t narcolepsy because “it isn’t that bad” but after watching this I really think I might. Im crying. I just hope if I do I’ll get treatment soon
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My onset was when I was around 14 or 15. It was not until I was 30 that a doctor recommended undergoing a sleep study, which confirmed a diagnosis of narcolepsy. There are currently several different treatment options, ranging from pharmaceutical to behavior modifications. You might have to go through a trial and error period, and, even after, the symptoms may not resolve completely. The most important thing is to begin at the beginning: have a sleep study performed.
Don't be afraid of getting a diagnosis! Only then can you treat it properly. I have had symptoms since I was a child, and it became debilitating around age 17. I didn't get diagnosed till I was 23. During those 6 years, my narcolepsy cause to me have to transfer away from my dream school and major, then was unable to complete my degree at the other school either. I also had to resign from several jobs because of it. An earlier diagnosis would have made a big difference.
Do you have any information on secondary narcolepsy? (Brain damage)
Should this be treated with medication or should we not use medication but just change our living habits to live with it?
Please let me know, thank you very much
I'm here to look for explanation why my bones in my finger weakens to the point I couldn't hold a cup of glassafter laughing hard, also I get sleepy all the time but I never have trouble sleeping at night. But at day time even if I already slept 12 hrs I still feel sleepy and when I take a nap it always turn to 3 to 4 hrs of sleep.
Though I can’t relate to the weakening fingers part, I 100% relate to sleeping solid but always being tired and taking a nap that ends up being 2-3 hours long.
I can pretty much fall asleep anywhere and quite quickly, whether I mean to or not. What I hate the most is at times I get so exhausted out of nowhere and no matter how hard I try, I end up falling asleep anyway. Or I don’t realize I’m falling asleep and next thing I know, I’m out. Or a few times where I didn’t realize it and as I was drifting away, I end up jolting myself awake more than a few times but it doesn’t help much.
I just wish I knew what it was or if it is anything. I just know it’s not normal.
That could be cataplexy, though it's the muscles, not the bones, that are affected.
Have you talked to a doctor about having a sleep study?
I woke up an hour ago in the morning and I am sleepy while commenting this.
Same I never feel fresh
I had all the symptoms except, but "waking up randomly at night" is kinda controllable. It takes about 2 hours until I get up, just to say "sleep you idiot" and go back to sleep. Guess I'm narcoleptic.
Sleep paralysis makes me so uncomfortable and nervous, I can't move my body despite being awake, it's like your brain doesn't works anymore or isn't responding to you. What I try to do is go back to sleep, bit my tongue or move some fingers to make some noice, but most of the times I just wake up randomly in it.
The worst part is that some times I have difficulties breathing during sleep (pretty rare, but it can happen to me), and I got breathing difficulty with sleep paralysis. It was the worst feeling ever. You can't breathe properly, and you can't do anything about it because you're paralyzed. I hate this thing.
I'm so terrified of getting sleep paralysis and it's very hard for me to sleep idk why sleeping in the day gets rid of my Paranoia but it does and it messes up my life..
I legit got sleep paralysis like more than 10 times the past 3 years. Trust me yo its like scary for the first 10 seconds and by the time you wakeup in the morning you basically forgot it ever happened. The only bad one i had was when it lasted like a minute and i was trying to get up and go to my moms room but like its not bad yo trust me and respect yourself
@@brownboyaustin8887 I have a baseball bat wedged up against my door and the wall so the door doesn't open
I haven't had sleep paralysis yet but I have dreams where things are looking through my window or trying to get in from the door. Windows are always locked and curtains are always shut. Idk what I'm gonna do when I move into a van..
😭😭😭i completely can relate
I’ve had nights where I’ve been scared to go to sleep because of sleep paralysis. I rearranged the order of my room before bed time and it actually helped me!
My symptoms get triggered from stress. For example I was falling asleep even thru the nurses trying ccx to keep me awake, while in labor with my 2nd son because there was complications and I was so stressed and panicked .
A balanced diet has a huge affect on an individual's alertness throughout the day! Especially in the later stages of your life.
Zoned out while watching this video ..guess i have to watch it again
Normal here. But ONCE I had sleep paralysis which was the scariest thing ever happened to me. I was WAY past zombie mode. I was fully awake and couldn't move a freaking muscle. I willed myself to wake up to move a pinky finger anything! It was worse than having to move a mountain like something was ON me. I FINALLY broke through and moved a finger which snapped me out of it. People were walking around me and I could hear them in the break room but they probably thought I was just snoozing for a second. I was but I couldn't ask for help or anything. I was literally screaming in my mind to wake up. Worse fight I've ever had. Myself.
Call on the name of Jesus from now on sweetheart. This is medically termed as "sleep paralysis", but it's really demonic.
We know frighteningly little about the brain, even less so about the illnesses that affect it
The movie Ode to joy is what brought me awareness to cataplexy. It’s 2022-05-11 and I had NOOO idea narcolepsy and cataplexy existed.
Could hypothyroidism contribute to the development of Narcalepsy?
From process of elimination I have Narcolepsy and all symptoms including cataplexy during laughter (mostly during laughing i almost fall and for about 4 seconds loose control lol) but my sleeping pattern is fine. I don't have sleeping a problem sleeping at all.
I was injured in my brain because of a hit and run motorcycle accident. Since then, I had trouble sleeping and waking up, even hallucinating when waking up that I have to do a task that I was never told to do. Came here because I wanted to know why I had a sleep paralysis.
I am noticing that some of these measurements does not address the temperature of the given anatomy within the brain and possibly the anatomy not of the brain?
I'm from Africa in Uganda, and I knew something was wrong with since Primary and high school coz I would always be sleeping in class, one time I visited a clinic, explained my situation and the nurse explained that I'm just not sleeping enough.
I got to know that I have Narcolepsy after watching a movie that had a guy with the same disorder.
Upto now most friends and family think I'm just lazy coz I be dozing all the time and can't concentrate on something for long hours, even just driving for long hours is hard without getting an attack.
Great video brief for introducing people to Narcolepsy. Much appreciated.
i have this issue where i sleep and I'm very tired then usual so i will sleep for 5 minutes only, and I'll dream scary stuff and I'll wake up quick and still know what happened during that dream. I also have anixety and depression and always stressed out.
Oof
Tell me about it, but I’m way better now and more healthy ☺️
I think caffeine consumption may lead to inactivity of the hypercretin cells as their job is done by the caffeine which makes them obsolete.thus our brains In a way starts getting affected by this daily habit. I myself consume a lot of caffeine (by drinking tea every morning) and I too have a similar problem of sleep attacks.
No after consuming caffeine it causes a crash that why people get tired. Totally different. For people with narcolepsy they feel like that all the time or especially right before a sleep attack. (Without any assistance)
I have cataplexic tendencies, insomnia, frequent sleep paralysis, abnormal REM sleep (in fact I can dream in just minutes of sleeping), and hypnagogic hallucinations (i feel like my whole body was spinning in all directions and angles) but I don't have excessive daytime sleepiness (as a matter of fact, if i return to sleep hours after having a 2-3 hrs of sleep, I'll get sleep paralysis). Is this still be considered as narcolepsy? Help.
Only a sleep study would be able to confirm.
Oh man, I’ve had that world-spinning vertigo before and it is rough. I took a small dose (0.5 mg) of clonazepam for a week or two and that stopped it. (Note that clonazepam is a benzodiazepine, and benzodiazepines can be very addictive. You want to take them in as low of a dose as possible and for as short of a time as possible, lest you become hopelessly dependent on them. I’ve heard the withdrawal is terrible.)
Anyway, the vertigo didn’t come back even after I stopped the clonazepam, which was a huge relief. I do have other weird sensations and visuals during hypnopomp and hypnagogia, though.
Sorry you’re going through this! Hope it gets better! (See a sleep specialist, get an in-lab sleep study with MSLT afterward!)
I’m here in the year of 2024, did any of those replacement therapies work out?
I worry that I may have narcolepsy but I'm too afraid to go see doctors about it because I don't want to sound like a hypochondriac or risk having my license to drive taken away if I get diagnosed. I just hope that if I try hard enough, I'll be ok. But it's 2 am now and that's why I'm watching this now. I can't sleep now but am sleepy all day.
Tessa Nalley. So you are awake during the night and asleep during the day? Move to the other side of the world
@@parthiancapitalist2733 No that isn't how it works. That's being nocturnal, not narcoleptic. Your suggestion is ridiculous.
Narcolepsy doesn't automatically mean you lose your license. Many narcoleptics drive, but are careful about how and when. Since we actually tend to be more in tune to our level of sleepiness, and more willing to take precautions, I think most narcoleptics are actually safer drivers. Plus if you have a diagnosis you can learn how to treat it.
I’m 42 and this just started happening to me. I’ll be standing in tbe kitchen and then all of the sudden falling down onto the floor. Help because my doctors won’t do anything
i wonder what breakthroughs theyve come up with since 2014
In yoga there are some exercise like kapalbhati , anlom vilom and humming that can help reproduce hyporcretin cells . one of my friend has this problem . He cured this with yoga .You just have to practice daily and increase slowly. Now I am applying it to my father .He is improving slowly . My father had this serious problem for a long time . One night he fell off from standing position on his hands . He told this thing after few years when we start noticing him .he used to sleep in sitting position. But now he is improving . I hop he will be fine .
Awesome video. Recently Narcolepsy has been confirmed to be an autoimmune disease, the T Cells that kill the hypocretin producing neurons have been isolated.
I suspect I might have this disorder. I tend to have headaches when I don't sleep when this happens. the headaches feel like a cold breeze in my skull.
My grandma and dad have it and I experience symptoms am I likely to have it?
Yes. Very likely
Narcolepsy could be genetically passed not only with illness
I definitely recommend getting tested. It can run in families.
I just wanted to know why I could fall asleep anywhere like through turbulence or even when fireworks are going off since it’s close to 4th of July and people are setting off fireworks
I have narcolepsy and it’s horrible because when I’m sleeping sometimes I feel like I’m awake but I’m not and I have fragmented sleeps during the whole night . Also I have sleep parálisis
Please can someone help me out. I have many symptoms of narcolepsy. I know hallucinations are one of them. so during the day or during the night whenever I feel an overwhelming tiredness right before I fall asleep it feel like something shakes my body awake. Right before I fall asleep. It happens all the time. Sometimes I am so tired that I just ignore it and basically pass out from being so tired. But most of the time it scares me so bad I fight everyday not to fall asleep. Please anyone give me an honest opinion. Is this a symptom of narcolepsy or do I have a poltergeist?
So glad my insurance covers Adderall, or I'd never get anything done. I have super vivid dreams as well, so often I don't even realize I've fallen asleep when it happens, and then walk around thinking things that happened in a dream, actually happened. Half the conversations I used to have, never even happened. People would just look at me like I'm crazy.
This was very educational, thank you.
Thank you for this video. 🌞
I'm pretty sure I have narcolepsy but I can't get a doctor to give a crap enough to refer me for a sleep study. I've had sleep paralysis sinse I was a child almost every night at least once a night and sometimes up to 6 times a night. It never gets any less terrifying. I will be screaming at the top of my lungs in my head but not a whimper will come out, I get this wierd electrifying sensation all over my body, and I'll feel like my body is spinning a million miles a minute while everything around me is still, and I hear what sounds like a large group of people chanting or speaking in unison very loudly, I can feel a strong presence in the room but all I see is darkness. It's kind of like what I imagine it must feel like to be ubducted by aliens in the middle of the night after being awoken suddenly from a very deep sleep. It is so intense it makes me feel physically sick, and it is absolutely terrifying! Especially when it happens repeatedly, 2 or 3 times in a row. It's not always the same feeling and it's not always as intense as that, but more often than not it is, either way it's always terifying and it always frightens me to the core, even though I know whats happening, and I know I can't be hurt, and I'll wake up soon. I also have these wierd dreams where I wake up in the middle of the night to use the bathroom and get a drink of water and then go back to sleep, but soon after I've "fallen back asleep" I'll realize, I've actually been asleep the whole time, and I've only dreamt that I got up and releaved myself and I know this because I still really need to use the bathroom, but I can remember that I just went. So I get up again "this time for real" because I need to pee really bad and I've been holding it in for God knows how long at this point! So I go releave myself. Finally! Then I go back to sleep. Only to once again realize that I'm still dreaming! and I'll (reset) and repeat this same process over and over again. It will go on and on in a never ending cycle until I can wake myself, or my morning alarm goes off, and by that time I'm literally about to pee myself. Idk why I get trapped in the cycle and it seems so real; and some nights I just think all night, while I'm asleep. I didn't even know it was possible to actively think while being asleep and actually know what was going on inside of your own head but it is. Sometimes I'll think about stuff I need to get done, doctor's apoinments I have coming up, things I'd like to do in the future, conversations I've had, etc, etc sometimes I can spend my entire 8 to 10 hours night sleep just constantly thinking about any and everything. It is so exhausting, when my alarm goes off in the morning my head hurts so bad because I haven't been able to turn my brain off for one minute in 10 hours. My head feels like it's going to literally explode! I think the different ways I dream is what keeps me from actually getting a good night's sleep. I've been to so many different doctor's and they just want to prescribe me high doses of sleeping pills and antidepressants and be done with me when nothing seems to work. They think I'm lazy and over exaggerating the way I feel, how much I sleep, and the fact that I'm just exhausted. If they can't fix me with pills they just don't care. I just feel worthless when I put my kids on the bus for school and go back home and sleep all day because I'm so tired. Some morning I wake up and cry because I can't even get up to wake my kids up for school I'm so exhausted, so I let them stay home a day and they get up and make their own breakfast and lunch and keep themselves quietly entertained while I sleep. I know they must hate me because I can't take them to do the things they want to do because I'm always to tired. And I know they're sick and tired of hearing me say I'm to tired or I don't feel good, because I'm sick of it to! I just don't know what to do anymore. I feel like there's no hope.
Kathy graeter
That’s very interesting. I have extremely similar sleep experiences that you described... that ominous electric feeling that overtakes you. For me, it’s almost like, I feel it overcoming me and if I fight it, I can break out of it. But if I just give in, I go into sleep paralysis.
I don’t experience the daytime exhaustion after a night of sleep though. That sounds pretty frustrating, especially if it’s keeping you from being able to be productive during the day.
Have you tried the pills they prescribe? Especially the sleeping pills? I would think a strong sleeping pill would help slow your thoughts enough to give you a more restful sleep.
If you don’t want to take pills, have you tried lifestyle changes? Maybe diet, exercise, etc? There’s gotta be something you can do.
@@RMichaelHimself I cant get my doctors to prescribe me sleeping pills that are strong enough for me. I have tried diet and exercise but it doesn't make a differance. My doctors dont really seem to care and I'm tired of complaining to them.
Ive been to multiple doctors, therapists, been on an antidepressant. It took from the time i was about 14 years old until i was 20 almost 21 for someone to mention a sleep disorder. I finally did my sleep study last month and waiting on my narcolepsy medicine to be ready. I learned that a lot of doctors, etc really don't know what they're talking about or doing. It took a psychiatrist to realize i have a sleep disorder. So i feel your pain and i really hope you can find a doctor that actually knows what they're talking about.
It took me a long time to get a diagnosis too. If doctors are saying you're just being lazy, see if you can find another doctor. If they're just trying to drug you without going deeper, I highly recommend finding a D.O. (doctor of osteopathy) instead of an M.D.. It's a different type of medical degree, but ranks the same. D.O.'s went to medical schools where there's a bigger focus on finding underlying causes instead of just medicating symptoms.
On another note, lucid dreaming is pretty common for narcoleptics, and a lot of your descriptions of the physical symptoms do sound very similar to my own experience with Narcolepsy.
In addition to a strict sleep schedule and sleep hygiene practices, a low-carb diet has drastically helped many narcoleptics, including myself. If you're unable to get diagnosed yet, it might be worth a try. It can be rough at first while the body is having sugar withdrawals, but it has been life changing for many of us.
Did someone Have cataplexy and all the sign of narcolepsy, but mslt test was normal?
What are your thoughts on an upcoming once nightly sodium oxybate?
How can i deal and treat
Delayed sleep phase disorder ?
Every day i sleep about 48 mins later...
Question could you just overclock the hypocretin neuron like send electrical shocks to those neurons to force them to work ? If yes we could maybe make an cyber part that's attached to the skull with a adjustable clock to set off or on the system.
What is norcolepsy treatment
I envy how these people have hypnagogic hallucinations. sounds magical. I love dreams. I have sleep paralysis very often and vivid dreams just before I wake up, but nothing like what they have.
I wonder if, similarly to our daytime sleepiness and/or cataplexy being caused by movements or emotions flooding, our insomnia is caught by a lack of stimulation, being alone in the dark without anything to flood our brains and shut it off like in the daytime. I always felt like that cod be the case cause I know I sleep way better with a podcast or smth on at night than I do without, it's giving me info and emotions that can put me to sleep yk
yeah I have narcolepsy every time I get stressed in the school like a mental defense and this drives me crazy I should be more wake up in exams season not the contrary and this due to I'm very sensitive can not work under pressure !
I've never told anyone this and except for my parents and schoolmates no one knows about this. Its sort of like a Donnie Brasco scenario you try to tell some one but it will ruin everything. There's nothing wrong with suffering in silence as long as it you can keep it a secret. Eventually you realize being a fully functioning Narco isnt bad because you can not beat it theres no cure but at least manage it
Sadly we can't say we are narcos, the cartels will kill us. But I agree, I tried to tell friends and family but they just make fun of me or say I'm lazy, my brother's friend thinks that we are gods because if our sleep paralysis which makes no sense at all.
@@davidharris3028 lazy or depressed, hear that all the time. Makes one retreat.
Cataplexy is not always triggered by strong emotions. Myself and others I know with narcolepsy with cataplexy do not have it during emotional moments.
I have narcolepsy and another thing where certain sounds makes you mad and one of my trigger sounds were in this and I got mad and turned down the volume and threw my phone and now my screen is cracked I'm an idiot.
Misophonia? We have all of these issues in common! (Well, minus the cracked screen lol)
Btw, I know that you were just expressing frustration or embarrassment, but you’re not an idiot. It takes a certain amount of intelligence to do what the rest of humanity does while you are dealing with health concerns. : )
Kpop people are annoying when they comment... we get it, you’re here because of bts you ALLL don’t need to comment tbh one or two is just fine. Just reply under one person who commented that they’re “here because of ___” post. 🙄
Lei it’s not that difficult to ignore the comments
After 30 years of asking, I just discovered I have narcolepsy 😢. When I was in school, I sleep in class; at work, I feel sleepy. After having sleep paralysis moments ago, I was researching on the probable causes (as I was lying on my stomach this time around, unlike previous experiences) and behold, I found out a potential cause of SP is Narcolepsy.
I have fragmented sleep. I wish I could just get a full nights rest without waking up. It’s very frustrating. Other than that, i do feel tired during the day on occasion but I think that’s do to my fragmented sleep and not so much narcolepsy.
I found that no matter how much sleep I get, I react the same during the day, so I just get a small amount of sleep so I don't just waste time because its not going to help anyways
Cortisol has any effect with the disorder?
I'm pretty sure I have this. It just showed up in my feed and makes sense. This may be it...
I can stay awaken for 2-3 days constantly and at 4th day I need whole sleep almost more than 24 hours----What kind of sleeping disorder it is?? We can't call it lack of sleep because at 4th day I sleep in extreme ie. More than 24 hours and nor we call it excessive sleep because prior to that sleep I can stay awaken for at least 3 straight days??? I want to get rid of this problem and also want to know more about what I'm going through Anyone please help
Doesn't sound like Narcolepsy. Not sure why you say it's not lack of sleep? If you're staying awake for 3 days that's about 24 hours of sleep you're losing, so it wouldn't be unreasonable to sleep that long. If you are unable to fall asleep for that long, definitely talk to a doctor (especially if you're not taking anything to cause the extended wakefulness, like drugs/caffeine/energy drinks/etc.).
Hello I‘m Thamer Fathi I in 17 y.
I Live in Libya and I need any help I am infected with narcolepsy .
Thanks