My friend has recently been diagnosed with narcolepsy so im here trying to educate myself more so she doesnt have too! Thank you for this video! i wouldn't have known Narcolepsy falls under the umbrella of an Auto immune disorder! Ive also got rheumatoid Arthrtis like your mum and sister! xx
I have narcolepsy too... my Dad has RA. It’s terrible. RA is a hell of a life, as much as Narcolepsy. They get exhaustion too... I freaking hate all these disorders. It sucks. So much.
You’re a really wonderful friend, I wish we all had one of you! My closest friends (and family) are mostly dismissive and frequently snarky/sarcastic about my narcolepsy/cataplexy.
The nightmares and hallucinations are the worst! I have mainly auditory hallucinations and it gets really creepy sometimes, especially at night when you try to sleep. I also hate REM-intrusions because I start seeing things when my eyes are closed........ I got narcolepsy from a flu shot at 2009 and I got my diagnosis 2016. But yeah, it’s nice when there’s other people who KNOW what it’s like to live with narcolepsy and that it s u c k s because even when you have people who support you and try their best to keep up with your symptoms, they never REALLY get it (and I do hope they never have to).
Being diagnosed with narcolepsy has helped ease my mind some about the hallucinations and sleep paralysis, but its still unnerving sometimes. Hearing and seeing things that isn't there, and not being able to react when you are scared me to death for a long time. I'm still not completely "okay" with it, but having answers has at least explained why its happening.
I feel like I would generally be in tears after watching something that PERFECTLY describes what I’ve gone through in my life with narcolepsy, but we all know that I’m just way too fatigued and tired to even have that happen😅 but really though. . . Thank you so much for creating this video. I feel as though I’m never able to fully explain this properly to family and friends and now I’m able to send them this with you’re fantastic, thorough explanation of exactly what I’m feeling. I’m currently 20 years old with my birthday being on the 21st this month, diagnosed about 6 months ago like yourself, and also participated in volleyball and early school activities like yourself. I’m amazed at how identical our lives seem to have sounded
I was diagnosed when I was 22 after years of serious daytime sleepiness, dream enactment, sleep walking and talking, sleep paralysis, cataplexy, depression, and hallucinations. I've crashed a car, burned myself with coffee, and have fallen asleep even while walking, talking on the phone and teaching a class. After battling with misdiagnosis, failed medications, and much heartache I am now on a great medication regimen. Great video and thank you for sharing, I hope more people learn about and understand narcolepsy so that sufferers can be diagnosed much sooner than they are now.
I have narcolepsy. People tend to think its funny... And i make fun of myself alot of times. But its not funny and it sucks so bad. My daughter will have a school function or performance and usually, I cant stay awake and it bothers them. Which in turn bothers me.
i am 20 and I have not been diagnosed yet, but my doctor said i have the symptoms and when i crashed my aunts car while driving home, its become a more issue to look at
Glad I found your video. I myself am narcoleptic and have been struggling since my diagnosis in 2010. I really wish people would understand that is not just falling asleep.
Thank you for sharing your experience i also was diagnose with the same thing. I hope u make more video to help those who struggle with the same thing . because believe it or not there are a lot of people who deal with this and not really wanting to talk about it ..
Hi, i was recently diagnosed with Narcolepsy & I also have a rare auto immune disorder called Caspr 2. Taking 20 min naps throughout the day & cutting out inflammatory food like gluten & dairy. It is a struggle honestly & idk how im going to keep going on like this
It’s amazing how much symptoms or episodes of cataplexy make sense when you finally have a doctors confirmation of Narcolepsy or one of the other sleep disorders. I felt like a million pounds of extra stress was lifted. I’m triggered by anger, fear, extreme stress. And slight face and knee weakness from laughter. Can be really embarrassing having cataplexy attacks in public. Or have others accuse you of using illegal drugs when really I’m falling asleep uncontrollably.
Hmmm so interesting, one time I went on a date and the dude kept dozing off and then eventually knocked out cold. Couldn't be awakened. I even splashed ice cold water on his face. 😂 I told a friend and they said he was on drugs. Now I wonder was he narcoleptic.
You are going to make a great mom when the time comes. I have had narcolepsy since age 14 and I am almost 45. When you decide to stop taking medication for pregnancy purposes, you will need strategic times for naps. Eating really healthy, exercising, and being active with friends and family will make all the difference. Avoid sugar, high cards (bread, pasta, rice, potatoes) ... they make it really bad. Be very careful about what you watch and talk about, those things can revist you during sleep paraplysis. Learning your cataplexy triggers also helps. For me, I knew that I needed to sit down if someone was going to say something funny. I had 3 children and worked full time and went to graduate school. It is possible. It will take a team effort and transparency with your job, spouse, and support systems. I can drive for about 15-20 minutes. I pull over if necessary and some days take a nap before I leave work or arrange to ride with co-workers for longer trips.
Wow I completely relate to your story. I’m 23 and after dealing with symptoms for almost 4 years I just got diagnosed this past week. It’s definitely a relief to finally know what’s going on with my body! Thanks for making this video it’s a relief to know I’m not battling this alone.
I have narcolepsy as well. I was diagnosed when I was I believe 21. It’s been a rough time for me. I found out when I was going to school to become a medical assistant. It’s been very hard to perform my job and to be on time and to remember a lot of things. The cataplexy is very annoying and embarrassing. So happy to see people who understand, finally.
I’m going to school for nursing, and it scares me so much how it will work with my narcolepsy because it’s already so tough. So glad someone can relate.
My brother told me about the pre-workout called Amino Energy. It’s not as expensive because it’s more natural than all of those harsh, heavy hardcore pre-workouts. This product is more so meant to replace coffee (which makes me fall asleep) and is supposed to be an energy boost. The normal serving for a pick me up is 2 scoops or three for more energy or 4 if you wanna have a really good workout. I never felt the need to take 5 or 6 (which is the maximum a day) even though fitness buffs love to. Anyway I literally love it. You will feel awake and present and relieved, no jitters you won’t feel that gray cloudy feeling that comes over you during the day that is a STRUGGLE to fight through. I don’t take it every day but some weeks I do. I think it will be very helpfully to your life day to day especially if you don’t wanna take meds. I buy the watermelon and blue raspberry lemonade. It’s delicious.. and if you need help ordering it you can email me and I’ll screenshot a picture of the right one to get
i really needed this. thank you. i’m 16 and got diagnosed a month ago. i’m very blessed because i know for many, the diagnosis took so long. my aunt has narcolepsy and my mom was able to very quickly realize i had narcolepsy. i’m struggling because i’m just starting a good medication (i went to a neurologist that didn’t know ANYTHING about narcolepsy). I had the sleep study just like you! I only had to take 4/5 naps because i guess i’m that narcoleptic haha. i got 9 hours asleep the night before and the longest time it took me to fall asleep for a nap was 3.5 minutes. I went into rem sleep every single nap. But it has kinda destroyed me recently. Last semester i had straight A’s, I was 20th at state for cross country, and i was in stuco and constantly doing things. then second semester hit, my highest grade is a 82%, and i had to give up my running dream for this season. you gave me a lot of hope that i can get better. thank you so much, i’m going to send this to my close friends to help explain it to them. it’s really hard to put many of the things i feel in words. thank you!!
Emma Kettler I’m also sixteen with narcolepsy! I went into R.E.M. sleep in every nap too- after an average of 3.5 minutes instead of the normal 90. And I fell asleep after around one minute of the lights being out. I’m on methylphenidate for the sleeping and venlafaxine for the cataplexy and it’s helping but it’s still very stressful amongst my life as a teenager and a student. Admittedly, my dreams are the one part I like about my condition because they are lucid and vivid and fascinating. You’ve got to look at the bright side!
This describes what I am going through so perfectly. I am 15 and started experiencing these sort of things last year, but haven't got a formal diagnosis yet and is so nice to find someone that understands and can describe this if this is what mine is. Thank you.
I first started experiencing Narcolepsy at 15 also. Was diagnosed at 17. I am 24 now so I have some years under my belt. Coming from a more wholistic mindset It would be beneficial to examine and research Narcolepsy beyond conventional medicine. In indigenous cultures there have always been those who receive visions. I find that living a Meditative lifestyle shifts the entire experience of Narcolepsy. If I try to go at the same pace of the masses then I tend to fall asleep. However the more conscious I become about how I want to apply my meditations I can tend to maintain wakefulness much easier. It is to the point to where I use Narcolepsy as a tool to access the Higher mind. I am going to start recording my experience also. To share my story. My insta is @SeenFromTaris I make focus beads. Sort of like a talisman. Bc as u begin to experience the shift in the realms u have direct access to the talisman will allow u to maintain your central primary awareness. Here your beliefs systems are very crucial to being able to actively regulate and discipline what is considered Narcolepsy. Astral Projection goes hand and hand with Narcolepsy. They mirror one another.
Thank you. I’m more than twice your age, but you are so wise, worldly, and helpful. After decades of thinking I must lazy or crazy or something, I have made an appointment with GP to beg for a sleep test.
My wife has narcolepsy and I’ve never really understood. She’s explained the frustration but its never been articulated this way. Great video. Thanks for sharing.
This is amazing! It's so nice to hear somebody else's experience with this. You even mentioned abput getting pregnant and being a new mom and precautions you will have to take. It's something I think about a lot. Very inspirational. As women and narcoleptics we need to continue to uplift eachother! Best wishes!
Thank you! After posting this video, I heard that some auto-immune disorders can go into remission when you become pregnant which is super interesting if true!
Did your doctor tell u absolutely no go on your meds when pregnant? I went cold turkey for my first pregnancy but for my second they told me I could bc otherwise how do I raise my one kid, work, drive etc. I’d love to chat more I was diagnosed when I was 19 and I’m 32 now.
So glad I found your story. I have many same symptoms that I thought only I had, I feel very blown off by my doctors. Thank you for that. What I would give for some energy. The profound fatigue is the worst
Though this video is 2 years old, I am so thankful that I found it. I was recently diagnosed with narcolepsy, and just hearing someone go through the same things I am going through is so reassuring! After years of being misunderstood and frustrated with myself and my body, I've been starting to slowly learn to accept it more and more. Thank you for bringing awareness about this disease, and allowing others to understand it better 😊❤️
Thank you for sharing what narcolepsy is like. I am coming up on a year of being diagnosed & I don’t know anybody else with the disorder. I really struggle with EDS & sleep paralysis and often feel alone and discouraged. In the kindest way, there is comfort in someone sharing their own story. Thank you again :)
Hey Lo! Thanks for sharing!!! I was recently diagnosed with narcolepsy and started taking meds. This past Thanksgiving I was finally able to stay awake the whole time and enjoy being with my family.
I have not been diagnosed with narcolepsy. However, I can't stay awake for very long. When I was younger, I slept consistently. If I force myself to stay awake, my brain basically wants to sleep, and I just can't. My brain falls asleep anyway. If I do fight through falling asleep, my brain shut off, and I'm like a robot just doing normal functions. I'm now 45, and I have learned that I just need to sleep more than others, and I spend a lot of time feeling like I have zero energy because I'm sleepy. It's really sucks because I feel like I miss out on so much. Thank you for this video. I now know I definitely have narcolepsy.
I know this was made several years ago, but I just wanted to tell you about my experience with narcolepsy and pregnancy. I had never felt as good as I when I was pregnant. But now, I'm going through menopause and my narcolepsy the worst ever been. Don't let narcolepsy get in the way of having a family. If there is a will, there is a way. It's awesome being a sleepy gamma Riley of 3.
Subscribed. I have Narcolepsy with Cataplexy, diagnosed 2012. REM 5/5 times with a mean latency of 1.8 mins. Narcolepsy is so difficult for me bc I am in automatic behavior a lot and I admire the energy you show bc I know how hard it is to have energy. I wish you much success and look forward to your videos.
Really great video describing what it's like. I don't have an official diagnosis, but I am treated for it, but even with meds, it still can be bad. I've started doing more research on the subject because I got to the point where I'm not making it past 830am without falling asleep. It is refreshing to hear that other people have the same exact symptoms I have had since early high school. I used to fall asleep often in school and miss entire classes. I start to dream while awake or while just starting to fall asleep. I mostly feel tired and when a "sleep attack" comes on, if I just don't fall asleep instantly, it feels like I've been awake for many many days. The stigma of sleeping during the day is another issue altogether. I even have to explain to my wife that I don't want to have to go to sleep in the middle of the day. I'd rather feel awake and alert all day long. Thanks for posting the video and promoting awareness of the issue.
I have suspected N2, 2 sleep studies and an MSLT but they never had me quit my SSRI before either tests so I couldn’t get an official diagnosis. Still had an extremely high amount of REM sleep and fell asleep within 5 minutes on both tests besides the naps, which were 7-12 on 4/5 naps. Sorry for sharing so much information but I always feel I have to explain why I don’t have an official diagnosis. I’m 24 so it was SO relieving to hear someone else my age tell their story. I always thought I was lazy and am always frustrated that I can’t do everything I think I can get done in a day. Medication is helping. Thank you again for sharing!!
Hi! I was just diagnosed, but I still have to do the sleep studies in about 2 weeks. I've been kind of going back and forth because I tend to downplay how I'm feeling, especially to others- but while watching this video I realized that I related to everything you shared. Thank you so much for sharing this! It has been really hard to talk about with friends because I don't think they 1. believe that I could have it and 2. understand how much it sucks- it kind of has become a joke at this point. So hearing your story and having someone to relate to just helped me immensely :)
Hi, great video, I've been living with narcolepsy for 35 years , My advice is get daily exercise, plenty of fruits and vegetables ,work outdoors and plenty of hobbies, Thanks, and take care 👍
I was in the military with narcolepsy and didn't realise it. I had warned my bunkmates not to wake me up too suddenly or recklessly because I knew I had a tendency to not quite wake up and it can occasionally spin me into a waking nightmare. I would sleepwalk on ruckmarches and standing at attention etc. And during briefings. I remember once my sergeant caught me and yelled "PRIVATE ARE YOU SLEEPING DURING MY BRIEFING?!" I SWORE UP AND DOWN I WAS AWAKE LOL! He goes "what did I say?" Turns out I was dreaming I was listening to the briefing and what I had heard didn't even make sense, like pink elephants or what. Honestly didn't know I dozed at all. It was easy to fall asleep in prone position with my rifle (my helmet would rest where I'd put my face for the sights) but let's face it, that's a comfy sleep position X-p I also could never fall asleep early enough at night no matter how exhausted I was from the day.
PLEASE GO ON SICK CALL multiple times & Get All The Symptoms Documented before you get out! I’ve had problems since at least 1991 after Desert Storm and am maybe just now going to set diagnosed in 2021! I couldn’t figure out what was wring and Dr.s never took it seriously. Finally, I caused a wreck in Jan, got fired and the VA is slowly examining me, as available between treating people with other neurological problems. ASAP, get diagnosed, get help and carry on with your life! May God protect you!
I am so happy you created this video. This is exactly how I have been living my life since I was diagnosed with Narcolepsy at 12 years of age. It has been a journey but I have learned to live with it. I am now 41. I got medication but after a while it would nog work anymore on my body, and I would have to use more and more of the medication. I didn't want that so I decided to completely stop with the medication. What helps me throughout the day is to chew gum when I feel my eyes getting heavy, take a powernap, or a cup of coffee or red -bull.These are the tings that really helps me to get through the day..
Good luck and thanks for sharing. 🍀 People do not understand, that sufferers are 100% depending on stimulants to get and stay awake no matter what happens during sleep - 24/7/365 for all time, no cure possible. And on the other hand there are side effects to those drugs. So it is a constant mental struggle day after day as a result. Depression is a thing as a comorbidity. Hanging out at the cinema in the evening or social events like a party provide a challenge. My experience is primarily exhaustion. You gotta do the right thing hour by hour day by day, no alcohol, a lot of sports, all while starting the day with no rest at all, not to mention that sleep itself is totally fragmented as well. There is a reason why sleep deprivation is considered torture. I am forever thankful for stimulants. I cannot tell people this, since stimulants are for normal people a hot topic.
I’m doing a sleep study soon to test for narcolepsy. I fell asleep at the Twenty One Pilots concert (like with fire and everything) and at a music festival.... outside.... in a crowd...... I was in the front row right next to the stage and I just sat down and took a nap... I’ve also fallen asleep driving and gone off the road after 9 hours of sleep and coffee... and a lot of other situations like that. It’s been a struggle because there’s so much I want to do that I feel like I haven’t been able to, or won’t be able to do. I feel like I’ve missed out on a lot and I’m lazy to not make the most of my days and sleep them away. It makes me feel a million times better seeing how positive you are about this and have you’ve been able to cope with everything the way you have. I’m glad after all those years you found the cause of you’re sleepiness and have worked towards treating it. I hope if I am diagnosed as well, that I’m able to keep such a positive outlook on everything
I understand, not knowing why it would happen (especially when driving and coffee not helping ever) is super frustrating but I hope you get your answer soon and just know that it is such a relief to understand why and realize that it's not you or who you are but rather just something inside that needs to nap a bit more
Thanks a lot for this video, I was just officially diagnosed with narcolepsy 3 weeks ago and I've been doing a ton of research. My freshman year of college this last year was rough, I was falling asleep in class almost every day, sitting down to study or do homework turned into a battle of just staying awake and driving became quite scary. I am 3 weeks into taking my medication for it and it has been helping me thank goodness. I'm excited for this school year now that I have this more under control. Thanks again for sharing your story, know that I will be praying for you and for the rest of us all who have to deal with this intrusive disease every day!
I was recently diagnosed with narcolepsy after struggling with it since high school (I’m 22). It’s affected my social and daily life, not to mention my education. So happy to be able to relate through this video because I’ve felt very alone with it for a long time and often feel like no one understands. Thank you for this helpful video ❤️
This is the best explanation I’ve heard yet. Thankyou. I didn’t know I had a problem until I got married at 30 years old. My wife said I was driving with my eyes open in the middle of the day and she didn’t realize at first that I was asleep until I started driving through a stop sign without slowing down. When I woke up on the wrong side of the turnpike I made an appointment with the neurologist. Narcolepsy with cataplexy was the diagnosis. I always thought I was just tired! 😳 It’s like missing time as if your brain was abducted.
I know this is an older video, but thank you for sharing this. Last week I was diagnosed with narcolepsy, and it answered so many questions about everything that's been going on with me. Its still scary because there's so many unknowns, but I'm glad I'm able to find videos like this to help teach me more about what's going on with my body.
I have recently confirmed that I have narcolepsy. I also have 3 kids. Pregnancy was my excuse when I was so tired and most people were sympathetic since I was carrying a baby. I would sleep while I breastfed them, then sleep when they napped too. I somehow have managed without drugs and without caffeine for many years. I started drinking black tea recently and have felt a big difference. Thanks for posting about this topic.
I'm 31 and have had narcolepsy most of my life since I was 5. I dk t know what other it is like to be fully awake. I find this a blessing in disguise. I think it would be so alien to be on medication I'd probably feel like I'm high or something. Lol. I have a little boy and for a moment I was unsure if I should have children. My parents and partner are very supportive. I do spend most of my time on my feet and I am guilty of having a little too much screen time when I'm not up to playing with my son 🙃. However, I work full time as a secondary school teacher and find life is going perfectly okay without medication. I also speak to my mum when I'm getting sleepy
I was diagnosed with narcolepsy 4 months ago. Thank you for making this video so I don’t feel so alone with it! Also, I have one child and obv didn’t know I had narcolepsy when I was pregnant with him but I basically slept through my first and third trimester! When he was a newborn I felt like a complete zombie but in my own experience similar to you feeling more alert and able to stay awake when you talked to your mom on the phone, that is how I felt with my baby. He is 4 now and is very helpful when I’m tired! We put on a movie, or FaceTime my mom, and I nap for half an hour and he tells me what I missed lol. He also knows how to use Siri to call my mom or his dad if I fall. I’m also in college and starting medication this week!
I have narcolepsy and i can say... the way you eat can worse the symptoms... I usually have been doing for 3 years now 1 meal a day... I'm male and body is different at certain aspects... many of my friends always look how i can sustain only 1 meal but... after 1 week starting it, i couldnt feel hunger except for the sensation of empty stomach... I usualy wake up and drink a coffee and a pill... Modafinil... And at lunch or so, i do the same... but i drink coffee not bcause is a must ... its to help me waking up... i had a certain job and test this... and it worked without any problem... our body is really good at adapting i would say.... The sugar carbs seems to be more effective than carbs it self but no carbs till 6pm or so its the way i do... If i really feel hungry i drink water (or salty walter) and wait a bit to see if i really im thirsty or hungry (our brain don't know if you feel hungry or thirsty... instead he feel something odd and empty so its kinda vague xD) and if i still feel hungry and its not a candy/craving sugar something feeling... than i would hard boil an egg and that work out all the day long XD... Just saying that eating really can improve or worse ... power naps help me a lot indeed but in a job usually there is no way to sleep =P the carbs is what makes you feel tired but eating too much does the same... the cause of carbs doing that is because of the processing of insulin... is too much work for your body... the notice i get is, sugar carbs tend to be harder to deal with than normal carbs ...
Noctina Tatakai wow I have narcolepsy and my diet is going down the drain and I’m not eating enough but just eating lots of carbs (and admittedly some fruit and veg) when I do so that’s interesting to know
When my diet is the best I feel the best! But orexin/hypocretin also regulate your hunger cues as well as your sleep-wake cycle so I also like learning about how having it reduced not only results in narcolepsy but potentially different eating habits or craving carbs as well. Here's one of many studies you can take a peek at if you want to know more: www.ncbi.nlm.nih.gov/pmc/articles/PMC3629303/
Thank you for creating this video! I have been looking everywhere for something just like this to share with my friends and family. I have tried to explain what it's like to have narcolepsy to my loved ones so many times, but haven't been able to put it into such perfect words. In the moments I try to explain how I'm feeling, I usually just give up halfway through my sentences because of frustration, most often due to brain fog and slurred words. The times I have enough energy to explain myself, or attempt to compile all my experiences together in the way you have, I just want to use my energy for something else besides narcolepsy... haha I can't tell you how much I appreciate you taking the time to make this video. Thanks again! Your energy is so encouraging!
I got diagnosed before 2 months that I have Narcolepsy.. I am 24 years.. I feel I got all the answers of my tiredness. Still I did not start taking the medication... honestly I don't know how it will work .. I wish I will be able to live a full day in real... Thank you for your video 🧡
I am convinced I have narcolepsy. Told my parents last night that I want to be tested. I barely ever get a good night sleep, so I feel very tired during the day and fall asleep so quickly, and I experience sleep paralysis a lot. And I have those brief loss in muscle control sometimes when I make a joke and laugh. I can literally go to sleep in the afternoon after coffee and energy drinks, and my Concerta doesn't seem to actually be working.
Worst thing about Narcolepsy is the daily chronic fatigue during the workday. We aint programed to be up 8-10 hours straight let alone a couple of hours. So we basically zone out during the day and it makes us very incompetent and unreliable workers. Makes it hard to find a job.
Just diagnosed at age 48. Still trying to wrap my mind around the fact that I’ve been dealing with this all my life and it isn’t till now that someone, my neurologist, recognized my symptoms for what they were.
I was officially diagnosed 3.5 years ago after 25 years on Ritalin for hypersomilance. Had to do grad school (2014-2016) without the Ritalin for insurance reasons. Caffeine pills kept me awake but the uncontrolled dreams were overwhelming. Really messed with reading assignments, couldn't tell what was real. Finally had proper daytime sleep study with correct diagnosis. I skipped the Ritalin during my pregnancy. Coworkers would bang my office door every time they walked by which would wake me up. Tried breast feeding but I kept dropping (almost) the baby since I would fall asleep as soon as I sat in the rocker. Finally switched to baby formula. I really appreciate your video.
I have had the symptoms of Narcolepsy since I was a baby, I never had influenza, strep or the H1N1 vaccine before being diagnosed. Through my infancy, childhood and teen years I slept 10-12 hours a night, would wake up, and have to take a nap about 1-2 hours after and then another one close to midday and afternoon. This wasn’t seen as an issue cause I was young and everyone thought young people sleep. I was tired of getting told I have migraines and depression when I knew my headaches went away when I took my naps and my ‘depression’ was because I kept feeling unsatisfied with what I was being told. So I decided I needed answers and got 2 sleep apnea tests and then one MSLT was diagnosed with Type I Narcolepsy in 2017 at 20 years old. The thing with Narcolepsy is that, it’s extremely common for the diagnosis to take on average 7 years because people get misdiagnosed. The common diagnosis people get instead of narcolepsy is depression, anxiety, epilepsy (cause of the cataplexy), migraines among others. I take my medication on and off, depending on how my day looks. Every person with Narcolepsy has the disease progress differently and some truly have it worse than others. The research and patient experience is clear, it’s not reversible. But it’s can be managed with holistic care, to help minimize the symptoms. Now not everyone with Narcolepsy can do the same tactics to reduce their symptoms. This disease truly is individualized because what works for one person does not work for someone else. I know people who can manage no meds, but they also have to take 3-4 - 30 minute naps a day. I also know people who take no meds and only need 2 - 30 minute naps. I also know people who do a version of the keto diet and exercise and it works for them and they only take 1 nap. I also individuals who when they exercise at the certain time during the day their nap count increases because the exercise can tire them out. Honestly it’s so individuality specific, you really gotta do some trial and error and find what works for you.
I just turn 21 this month and for ever been dying to drive it’s the one thing I have left to hope for as narcolepsy has taken a lot away from me I’m hoping it goses well and seeing theses videos gives me a little bit of hope xxxx
I don't just fall asleep anywhere, don't have cataplexy, but I can dose off and fall into a micro sleep anywhere at anytime. But I wake up when I start to fall and catch myself. Going to sleep clinic this winter/spring. Have all the other symptoms: hypnogogic symptoms, sleep paralysis (one time in public at as greeting desk in a hotel (so scary!)), Sleep attacks, etc.
I also took IB classes in high school while dealing with the onset of narcolepsy. I would fall asleep in random places at school and get left behind in empty classrooms and such. Thank you for sharing your experience!
Again, thank you for sharing your story. You make me hopeful. I’m very type A and have been fighting my symptoms since college. I want to know I can still achieve everything I desire but it hard when your passion is there but your mind isn’t. My brother struggled for so long before and after his diagnosis. I just hope I find the right regiment faster.
@ Lo without Limits I just got my official diagnosis 2 weeks ago after being misdiagnosed for 5+ years. I am 20 years old and seeing this gave me a little hope .
Wow you are so very beautiful and not just to look at. Thank you for sharing your experiences. It is comforting knowing that I am not alone in this struggle. Thank you and god bless
I had this same experience when I was in high school/ college age. Up until I was about 22 or 23. I’m now 34 and I have the opposite problem. Can’t fall asleep. It’s fascinating, I had no idea there was something wrong with me the whole time. One of my professors would make fun of me for passing out in class everyday. Well haha I still got my degree in Nuclear Medicine despite having to teach myself everything.
Hi I know this comment is quite late, but I was diagnosed with Narcolepsy and feel much of the same fears and experiences you have. Loved watching it. It helped me understand how to articulate my feeling a bit more about my diagnosis.
I too suffer from autoimmune diseases. I have diabetes and was diagnosed with narcolepsy less than 6 months ago. It's frightening. I'm trying to learn more about narcolepsy. It's hard explaining this to my family...they don't understand. I believe I've had it for quite sometime. Thank you for what you're doing.
Thank you so much. I am getting a sleep latency test soon and likely have narcolepsy 2 - if not, certainly SOME sort of sleep disorder. I've noticed I've been able to dream within five minutes of falling asleep. It's great to be able to learn more and compare my experiences!
I’m 55 but started having symptoms 10 years ago. MSLT was 5 of 5 ( early rems ) during those day naps. I took Forever to get to that day. Many doctors have not a clue about this. Since I also have T2 diabetes it was initially thought as a sugar issue. Thank for videos like yours it all fell in place. Good luck and thanks.
I really want to say that I commend you for sharing your story. From my experience symbolism is key to understanding the visions. Pay attention to how you day dream and how it is corresponding to the present moment. Keep a journal and write them out so that you can track these synchronicities. Narcolepsy is a tool that can be used and harnessed for the purposes of manifestation. I can dive in deep with my experience. However, I just want to make it clear that mainstream society that we try to assimilate our selves within is not meant for the organic mind! It is meant for the programed mind. The mind has no boundaries or limits and bc we r used to using the programmed mind it is as if our mind is trying to chose a side! Also research is only as sophisticated as the questions being asked!!! Conventional medicine is inauthentic! It is one of the most recent systems of medicine compared to cultures who have cultivated their way out of Dis-Ease and Dis-Orders by putting things in place that will sustain focus and the awareness of self. America is not one of these cultures. America is Highly underdeveloped and doesn't feed off of Nature. With this in mind you can see the direction of the research and what perimeters are being put in place to sustain their own position rather than what would sustain the individual themselves who is directly experiencing the disorder themselves. Meditation is the Key! I have been off medication for about 3 yrs now. I was on Xyrem which was primarily getting my nights rest in order. And minimizing the Cataplexy that I experience. Bc I live a Natural Organic Meditative lifestyle Narcolepsy is not an issue for me bc I go at my own pace cultivating my mind consciously which contributes to my reception of visions. In a society without Television not everyone has the ability to receive visions and see beyond the current reality. The mind doesn't understand the difference between what is real or imagined so that means focus and beliefs is what determines the difference. We have a supreme gift that in an organic society emerging members of the community usually get initiated so that they can learn how to handle their power. It's up to us to develop the gift and use it or lose it. The only difference between sleeping and wakefulness is the RATE OF BREATHE!!!! However, the America has yet to tap into the purposes of breathing at a slow rate to consciously tap into the R.E.M state of mind.
Also, what you explained as sleep paralysis is not what I think you meant. I think you meant hypnogogic hallucinations for what you described about the classroom and a microsleep for what happened in the car. Sleep paralysis, for what I know it as, is an experience where your brain is awake and your body is still paralyzed--generally these experiences tend to be ominous or scary as a person may feel like they are being watched or someone is sitting on their chest among other things
I was diagnosed last spring before my 21st birthday. I've been living with it my whole life but we didn't think anything of it all through elementary, middle, and high school, even when i was sleeping in ALL my classes!!!!! And during lunch!! It wasn't until Cosmetology school when I fell asleep doing services, in between clients and was so often late for class in the morning I would've been expelled if my mom hadn't talked with them. She saved my butt so many times. I didn't know sleep paralysis was real until refilling medication last summer. The doctor wondered why I hadn't talked to anyone about it before. I told him I thought it was my imagination- I didn't want to sound crazy. He assured me it's real and helped me feel so much better I cried when in left I was so relieved. Wow, yeah!! I can relate to nearly everything you're sharing. Except being paralyzed in class. That sounds like it was horrible.
I'm 21 and I am just now getting diagnosed with narcolepsy and I am also a mom I got pregnant at 17 and 19 so I have 2 kids. And I'm not on medication for narcolepsy yet but I've breast fed for 16 months now and am finally stopping. It is very hard and overwhelming at times but doable if you want to achieve your goals of having kids and breastfeeding. I'm also in college for dental assisting and was wondering if I'd even be able to have a real job because I didn't know what was happening to me everyday. Your video is helpful to see someone close in age experience things I have to deal with too so thank you for that and I think you'll be a great mom.🤗 And wow I have to have people talk to me when it's happening to me too and I told everyone to start talking to me so I wouldn't go to sleep and drop.
Thank you so much for this! It was so helpful! Although it seems you conflated cataplexy with sleep paralysis and hypnagogic and hypnopompic hallucinations for sleep paralysis. I experience so many of the same symptoms! I hope once I start taking medicine it helps.
i was diagnosed with narcolepsy (and cataplexy) this year and it's so cool hearing from someone else with it, since nobody else understands how it feels
@Lo Without Limits I hear you! I've had Sleep Attacks since birth & I'm 70! Eat, sleep, eat, sleep, etc. In my case, it's a food induced sleep attack narcolepsy & anti-histamines don't remedy that. Next night/day sleep test: 3/2022. If positive, it's down the meds rabbit hole for me. I have allergies to mono-sodium glutamate, malted barley, sulfites, BHT, +++++.....chemicals & preservatives. Additionally, after ruling out a latex FOOD allergy, Allergist testing (skin prick, blood) narrowed my food (fruit & veg) allergies down to: Birch, Ragweed, Mugwort, Orchard Grass & Timothy Grass related.....with lots of foods I know I pass out from.....& these same foods are cross-linked under each group. My biggest culprits: Carrots, Potatoes, Bananas, Squash (curcurbitacin poisoning), Celery, Garlic. Peanuts & Nuts. Plants make strong defense proteins against insects & me! Apparently the proteins don't breakdown even when cooked or frozen. But the protein bonds are broken down after dehydration! That's as far as I've advanced & would love to hear about what you've uncovered during your research journey since posting this great video.
I was diagnosed when I was 17 (10 years ago now, holy cow time flies) with type 2 narcolepsy (without cataplexy). My mom has the same. It's been a struggle, with the excessive daytime sleepiness, sleep paralysis, vivid dreams/nightmares, and hallucinations. I'm on Provigil, but of course medication can only help so much. Small naps sometimes help, but I often end up turning off alarms in my sleep (oops). It's always interesting to hear and see other people's stories and experiences with narcolepsy, because it's so misunderstood. Thank you for speaking up and sharing your story ❤
Never been diagnosed officially but I've had the symptoms of narcolepsy for over six years. I refuse to use prescribed medications but recently I find that taking 2-3 omega 3 supplements helps a shit ton. It really helps with my daytime sleepiness.
Enjoyed your video! I also have Narcolepsy (with cataplexy). Since I have Type I, I can't imagine my life ever without medication. That being said, there are a lot of research participation opportunities out there for narcoleptics (some that even pay). A great way to give back to the community and to the future of narcolepsy.
Hi Lindsay, my 17-year old son was diagnosed with Narcolepsy four months ago. Can you tell me more about paid research opportunities for him? He is too shy to ask...
My doc is suspecting the same thing - I used to call myself the Olympian I’d sleep; current finishing time is 18 hours of sleeping! It’s starting to be annoying so hopefully I can get a sleep test done soon
longest i've slept around the 36 hour. give or take a few. was 30 years or more ago. pasted out on a friday night after coming home from a summer camp. woke up sunday around noon after mom and siblings got home from church. i was wondering why they were all dressed up on a saturday. mom told me that it wasn't saturday. it was sunday and that she just let me keep sleeping cause she thought i was worn out from summer camp.
I am an elementary teacher and have been dealing with narcolepsy for 30+ years. I am 57 now and it is just getting worse. I have been teaching for 33 years and I have tried just about every medication out there. There are two new ones, but they are not tolerated well by my body. They had to be discontinued. I'm back on my old meds with an increased dose. It is really getting in the way of doing my job efficiently. I can tolerate it and the attacks usually by staying on my feet. If I sit down or look at a computer for more than 20-30 minutes, I fall asleep, fall forward and bang my head on the keyboard. When I feel so exhausted, I just lay my head down right on the table or the keyboard. It is so much safer than falling forward and banging my head. I find it so strange that most people and doctors do not know that right after you " fall asleep" you can still write and hear what is being said for a few more seconds. I once went to my general practitioner for a checkup and while waiting for her to come into the room, I fell into a narcoleptic sleep. She was unaware that I could hear her and she was calling my name and I couldn't answer her, but I could hear her. She stated, " Oh, I haven't got time for this, today! I'll just come back later and she won't even know I was here!" Well, guess what? I heard everything. When she came back in I was so upset and I didn't tell her why. The next time I saw my Dr. at the Lahey Clinic, I told him what had happened. He suggested that I tell her at my next appointment, what I heard her say. I did! She said she didn't know narcoleptic people could still hear, but they couldn't respond. She apologized and said she was going to read up on narcolepsy to better understand what it is all about. She said she never wanted to hurt anyone's feelings that way ever again. Another episode that happened was I fell asleep in a reading group and nobody could wake me up. The school nurse( at a previous school) thought it was my sugar and tried putting a Peanut- butter Cup into my mouth to elevate my sugar. I have a severe nut allergy(epi-pen) and I knew what she was doing and I couldn't stop her or tell her. I was trying to keep my lips shut as tightly as I could so she couldn't get it in. Thank God, my friend heard the nurse called to my classroom and started yelling that I was allergic to nuts and that she would kill me if she put that in my mouth! She knew about my narcolepsy and could tell that I was having an attack of it. As far as, being able to continue to write or function in your sleep before you go down hard enough. I wrote something off the wall in my lesson plan book and didn't even realize it and passed it into my principal. I got summoned to her office and there it was. I also have ordered 15 pairs of shorts the same color and the wrong size on Amazon because my body twitches when I'm falling into a narcoleptic sleep. So, my finger keeps hitting the "Buy Now" button! Thank God, Amazon called me and asked if it was a mistake or a computer glitch. I had no idea I had done that. I cannot keep up with my daily workload because I fall asleep trying to correct or do my lesson plans. I'm so afraid that I will get fired one of these days and lose my entire pension. I can't retire for another 3-5 years, but I fear I'm not going to be able to do this job for much longer. If anyone has any suggestions for me, please feel free to PM me or suggest some links here. I am now controlling it, best I can, with 20mg Adderall, Effexor 225mg, and 600mg Provigil. Any suggestions? I'm exhausted!
I am thinking I’m showing signs of narcolepsy I’m going to make an appointment soon with my doctor and I was just researching and watching videos and the strep throat thing made me pause the video to write this. As a child I had strep throat almost every two weeks. That is something no one else could relate to so that was really interesting you mentioned it!
Hey you should definitely try a heavy metal detox. Make sure to have a lot of animal fat with the detox smoothie that you make. The one I drink daily is 200 grams of raspberries, 4-6 raw eggs, 2 tablespoons of raw honey (buy it locally if you can), 2 tablespoons of 100% unsalted butter (milk butter), up to 1 cup of milk. This has been helping me a lot, if you want to talk more we can talk elsewhere about it.
Thank you for the video! I was able to relate to do much. I was diagnosed around 6 months ago with narcolepsy and although I have had issues with staying awake in classrooms and business meetings, over the last couple years I have had serious( and I mean serious) trouble driving and staying awake and alert at work. The muscle paralysis while driving a car was a real deal breaker for me. I am 25 and am learning so much about Myself and this disease. No luck so far with symptom management though. Tried daily weight lifting and even long distance running, about 8 miles a few times a week. The running was the most promising but I mean come on... thanks again! Listening to this on my drive home kept me awake and gave hope for a brighter tomorrow!
Hi Im 36 and from Denmark.. Ive always been good at sleeping but when i was about 20 i noticed somehting wasnt quite right.. i sleep alot, i dream alot.. but the wierdest dreams are in the afternoon if i want to take a 30 min nap.. and at night when i go to sleep... its not the same kinda dreams i dream during those two stages.. afternoon is like all over the place dreams with alot of daily stuff included... and at night its mostly really scary stuff.. almost every night i have someone walking from my kitchen to right beside my head where i sleep.. or someone walking upstairs.. or at times its way scarier things but mostly upstairs and kitchen.. i cant drive more than 30 KM without having to stop to the side and have like 10 min sleep.. amd when im really tired on a hot day i stuggle with just 1 KM.. I use to rollerblade alot when i was younger.. and lately i started again.. but i cant.. i just cant keep myself up when i get happy about landing a trick.. i call it "system shutdown" my mouth, head, shoulders, and upper body completely shuts off.. and if its something really exciting my legs go as well... but its not just boom and im out its gradeually sinking.. i dont go swimming anymore because im afraid too after a scene i had with my daughter.. im still trying to get help but the process is so fucking long its insane.. and noone believes me really when i tell this too them.. and the docters look at me like im insane.. when i tell them the latest dream stories.. i work atm but its the only thing i have going for me atm.. work work work work and now thats becomming a struggle as well.. its like it has become even worse at about ago 35.. i dont have much joy in life really anymore, like really having fun fun.. people say i look angry mostly but its really just because i dont wanna trigger the muscle upperbody thingy... Its just a small clip of how my life is atm. but Can anyone with Narcolepsy relate to this ? im really trying to figure it out because it doesnt look like anyone else really belives in what i say...
I was diagnosed almost 13 years ago.. I used medication to get through school then moved around the world change my diet and lifestyle to limit the amount of medications that I need. If you’re looking for diet to help... keto helps a lot of people, others do well to just limit carbs.. good luck! Thanks for sharing 😘you’re not alone.
I've never tried full Keto and not sure if it's 100% for me. I do notice an improvement when I eat clean, natural foods though and my body is getting the nutrients it needs!
I’m 18 and was diagnosed when I was 16. Narcolepsy type 1 (with cataplexies). It took seven months (which is LUCKY) and 5 different doctors to figure shit out and it was such a lucky coincidence because A. I belong to the minority of narcos that have all possible symptoms (that’s not the lucky coincidence obviously 🙄 ) and B. That doctor no.4 had a relative with narcolepsy so that’s how he recognised it and sent me off to the neurologist. Just FYI you don’t get born with narcolepsy, it’s not hereditary
Thank you for the video. I'm a 20 year old college student and I was just officially diagnosed with narcolepsy this past Wednesday. Unfortunately, I had to be back at school on Thursday. I'm not on medication yet but I will be soon. I've displayed symptoms of narcolepsy since I was in my early teens but no one caught it because of my OCD meds (doctors thought the meds were making me sleepy).
I was diagnosed 6 months after having my son and I couldn't begin my medication until I was done nursing. It was soooooooo hard. Luckily my husband was home to help. Basically all I did was nurse my son, pump (for times when I was too tired to feed him), eat and sleep. By the time my son was two, he realized something was going on. I'd have sleep attacks (I tried to take frequent medication holidays aslso)and feel him come sit next to me, rub my head and watch tv. When I woke up he'd get up and go back to playing. And he'd only do this when I was home alone with him. He is such an intuitive kid. I've known I had narcolepsy since I was about 20 but I wasn't diagnosed until 30 (doctors thought I was crazy). I was actually able to manage it on my own until I got pregnant at 29 and my symptoms got a lot worse. I knew I had to try harder for the diagnosis once my baby came because I'd need something to help me stay awake. Plus I work shift work and it got so bad during pregnancy that I had to plan for it not together worse. Luckily I was able to blame it on the pregnancy until I got my diagnosis. Have you tried keto? I've read a lot about that diet helping with symptoms. And helps with making breast milk.
thank you for talking about narcolepsy in a non-discriminatory way, debunking the myths and everything. (I myself was diagnosed almost two years ago) but I think it’s important to state that not all narcolepsy is an auto immune disorder. mine was caused from a traumatic brain injury to the area that makes orexin. it can also be from radiation to treat cancer, brain damage from infections (not necessarily an immune reaction from infections, but that can also happen). AND there have been plenty of studies that show stimulants can still be taken in pregnancy (generally lower doses with more frequent med holidays) in order to achieve a safe and healthy pregnancy for both mom and baby. i’d encourage you to look into this when you do plan to have kiddos and talk to your doctor. pregnancy already takes so much more energy that pregnancy and narcolepsy, without medication could be almost impossible to function. some of the studies state that the risk of stimulants is well worth the improved mood that the pregnant mom experiences by keeping active in her work and social life.
I've had a couple close calls too. I have sleep paralysis too- it's terrifying. The anxiety aftwards hurts too, physically mentally and emotionally. Thank goodness we're not alone. I want to find and meet more people to relate with!!
Thank you for the great video. I've been living with it for a long time...that feeling when sleep is coming and there is nothing you can do to stop it. Finally had an almost major near miss driving, which led me to finally get to a doctor, which finally diagnosed. Two years on meds (day time). Most days are ok. It is still very cyclical for me. My doc wants me to try xyrem, but that is where I refuse (for now). I wish there was cure.
