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LIVING WITH NARCOLEPSY: My Experience Having An Auto-Immune Disorder
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- čas přidán 26. 07. 2024
- LIVING WITH NARCOLEPSY: My Experience Having An Auto-Immune Disorder
Hi everybody! In 2015 I was diagnosed with Narcolepsy and in honor of Auto-Immune Disease Awareness Month (MARCH) and Narcolepsy Awareness Day (MARCH 9th), I thought I would take the time to share my experience with it. I hope this video raises awareness and helps you if you have or think you may have narcolepsy! Narcolepsy affects an estimated 200,000 Americans and 3 million people worldwide so someone you know may be dealing with it too. The video ended up a bit longer than I anticipated (SO MUCH to share on the topic) so I have time stamps below if you just want to scrub through. As always, thank you for watching and please comment any additional info or links that you have about narcolepsy and auto-immune disorders, I love looking at research on it :)
TIME STAMPS…
00:00 Start and why I’m making this video
00:57 Debunking myths
01:27 My background with narcolepsy and symptoms
04:02 My diagnosis and sleep test differences
05:15 Sleep Paralysis
07:44 Science behind the causes of narcolepsy
09:40 Narcolepsy and Auto-Immune Disorders
10:25 Current experience of living with narcolepsy and planning for my future
15:00 Long term goals and ambitions while having narcolepsy
THINGS MENTIONED…
Narcolepsy BLOG Post: lowithoutlimits.com/2017/11/1...
RESEARCH LINKS…
www.ncbi.nlm.nih.gov/pmc/arti...
www.sciencedaily.com/releases...
www.sciencedaily.com/releases...
www.ncbi.nlm.nih.gov/pmc/arti...
www.ncbi.nlm.nih.gov/pmc/arti...
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Follow me on Instagram: lowithoutlimits
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ABOUT LO
Hey everybody! My name is Lauren Nowicki but with Lauren being such a common name, I like to go by Lo (or sometimes just my last name). This channel will feature videos focused on healthy meals and snacks, working out and fitness, wellness tips and tricks, and my travel adventures! I started LoWithoutLimits.com as I try to navigate adulthood through wellness and wander and while I write on there often, making videos is my passion (I went to school for Broadcast Journalism). I’m going through a lot of life changes (and trying to do so on a budget) so subscribe to come along for the ride! Enjoy!
DISCLAIMER
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#LoWithoutLimits #Lifestyle #HealthyLifestyle #Narcolepsy
Please make more narcolepsy videos. You’re the only real person I can find.
I can’t find any other person either
I hope to have a documentary on my narcolepsy late this year or next. Hang in there
Yes please! I just diagnosed with narcolepsy and it's been so great to find this video...
@@FilamentWizardsI have narcolepsy. Groups on fb :) I have had it for 15 years narcolepsy Nyx
I've had paralysis and night terrors, and watching this video I've dropped my cell phone on my face like twice while I was dreaming.
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
Your a brilliant friend it really helps when you don't have to explain all the time and to have someone close who understands it
What a good friend you are.
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).
I’ve been waiting for a cure for years. I have hallucinations as well it sucks! Also cataplexy :-/ I didn’t know a flu shot could cause that
@@jenniferperrin4436 The shot was the trigger as would the flu have likely been. The cause is the auto-immune disorder.
YES I ALSO GOT DIAGNOSED AFTER THAT FLU SHOT WHEN I WAS 3
How do you get it from a Flu shot
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.
after watching this i realize i need help
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'm happy it helps, I was actually diagnosed years ago but thought I would finally use this platform to share. Happy early birthday :)
How do use manage yourself during classes in college ... Not even a single period I can concentrate
ME TOO!! I was in tears too. Point by point, that's what my life has been like!! Thank you so much for this video!
Yeah! Wow it feels good to see we're not alone. It's so hard to explain! Thank you for sharing!!
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.
I agree, hopefully we can all share our journey with it more in order to spread awareness and understanding!
I feel you I myself have narcolepsy
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
No one seems to understand what I go through.
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.
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'm happy you have something that works for you now! Comments like yours also help spread awareness since we all have different symptoms and solutions
@@chelseymelaa thank you I hope you can too.
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
Lo Without Limits what is your treatment exactly?
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.
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.
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 😊❤️
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.
This is probably the best narcolepsy explanation video I've seen. I love hearing personal experiences!!
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.
Summer Phelps same. I’m currently applying to nurse midwifery school
I have this too and I wanted to suggest something that is the only thing that helps me, if you’re open to hear it?
@@YizzleBerry sure
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
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 :)
I´m so happy to hear your story... I also have narcolepsy and it is really good to not feel alone.Thank you
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!!
It makes me so happy knowing that this video helped you and I hope you know that you're not alone :) 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!
Emma Kettler im sorry :( youre really pretty though!
How do you concentrate in class.. The moment 8 start concentrating classes.. I dose offf
It’s two years later now & idk if you will see this but I am 18 and just got diagnosed!! I need someone to talk to about this :(
I just got diagnosed recently and have been going through this since high school.. now 31. So grateful to have found your channel. 🙏🙏🙏
You are inspiring me to share my experience with Narcolepsy. Thank you for sharing 🙏🏽
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.
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.
Thank you for the video. The struggle is real.
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.
Thanks for giving me a video I can send to friends when explaining can be really hard for me. Living without medication, is really, really hard.
Hey Lo! I’m 32, live in Minnesota, I got diagnosed when I was 16 yo, I enjoyed hearing your story.
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
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.
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!
this is literally my story! I am 22 and was diagnosed in November of 2015. Same concerns with kids. thank you!! its hard you can do it!!
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 ❤️
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.
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.
Kirk Alton What kind of med are you taking ?
Krissy Hall I take Modafinil 200 mg.
@ Kirk Alton 👌🏽..Did you have any side effects?
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.
Your story sounds like mine! Except through college no one believed me, how tired I was. I'm glad you got things fixed.
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.
thank you!
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'm happy your medicine is working! and good luck with the school year, having it under control will make things so much easier :)
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 :)
really appreciate you make this video and speak out about this
thank you for this-- i just got diagnosed this past week and found some comfort through this video, also got diagnosed as a 20 year old.
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!
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..
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.
Yes, the stigma is a problem.
So nice to hear ur story with living with Narcolepsy! I have had it since I was 6 an infection did kinda kick it into starting from the sounds of it and ya it’s not easy I am not even aloud to drive :( glad u can and hope ur goals for working from home work out !
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!!
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!
People have no idea how challenging it is to live with narcolepsy.
Thank you for sharing ur story.
I found out about mine yesterday and am almost 30. Thanks for the video❤️🇳🇬
Spot on. Live with this every day.
Yes! It is always so nice to have someone articulate their experiences! I always have such a hard time explaining what’s happening and how N effects your everyday life! I REALLY relate to what you mentioned about your commute and falling asleep while driving and having to talk to someone the whole time to keep your brain awake. I hear you! That was the most scary/important/debilitating thing that made me go search out what was wrong. I legit had an argument with myself on my 1.5 hour commute while sitting at a red light - I figured that I could put my car in park and sleep for the 2 ish minutes that the light was red. It would help me be more awake for the rest of the drive, and I knew someone would honk at me and wake me up. I didn’t, I pulled over and walked around a store for a bit to wake up and finish the last 10 min, but that’s not normal! 🥴 anywho. Sorry I digressed but, thank you for getting the awareness out. My husband would tease me about being his little narcoleptic (before diagnosis) and I’d laugh and say “oh yeah, for sure” (eye roll)- because I only thought of it as Hollywood’s rendition. More people need to be aware of the actual disorder not just TVs definition of it 😊
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!
Man, I almost didn’t make it though… Grateful for the information..
I think I have this, thanks so much for this video ❤
I'm so thankful to find you.
I enjoyed the video. It has increased i knowledge of narcolepsy.
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’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’m having these exact same symptoms but I’m in the military 😔 it’s so hard to live with in this lifestyle
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.
Spyral StormTeacup I’m certain that I was too in the Air Force. It started with the leg jerks and leg cramps whilst sleeping.
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!
This is really useful to hear as someone who hasn't been diagnosed, my doctor thinks I have narcolepsy and maybe cataplexy
Great video, finally someone who feels like me.
How fortunate for you to have been diagnosed so early. Also I love how thanks to stigmas you're avoiding saying "I take adderall every day".
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.
I just got diagnosed a couple months ago! I love this video
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 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 ...
yes i'm definitely trying out different things with my diet to see what works too!
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 explaining.
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!
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 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!
So well spoken and get the point across please give us more examples of
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.
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 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
Holy crap. I fell asleep at a loud outdoor concert a few days ago. I was in and out of sleep the entire time.
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.
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 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.
Just watched your video. I have Narcolepsy with Cataplexy. Mine developed from a vaccination prior to deployment to Iraq. Love my naps !
Thanks for sharing! I’m going thru this now.
This is my story!!
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 ❤
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...
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.
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 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.
Definitely get tested, its always better to be safe than sorry :)
This is amazing 💕Very informative .. I’ve never met anyone with it and honestly didn’t know anything but what you see in the movies 💕. I subscribed to your channel and am looking forward to checking out your other videos 🦋
Thank you!
I was recently diagnosed and I am in the medical field for years I thought it to be a myth because i was told it was a disease I would probably never see in my life time as luck would have it I had it all along. It is a struggle and I can relate to everything she is talking about laughter is a big part of my life yet it is also my trigger for cataplexy I am contemplating on whether or not start the medication so I started searching videos of patients on medication to get anninsight as to what it is like for them and this video was very informative to me and i am thankful for it she inspired me to make my condition public to my family and friends today so that is good specially with kynpokemon go community that i Tun which has over 150 followers and is growing so thank you girl for the inspiration!
🙋🏽♀️ Narcoleptic too! I have some of the same issues too. Diagnosed 10 years ago in my late 20’s. It’s been up and down and I have still yet to figure out things.
I take concerta and I will be able to take it when I’m pregnant one day - thank you for this video means so much to me ❤️
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 👍
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.
Hi, thank you for creating this informational video. I have known I've had narcolepsy since I was 16 but am just now going through the process of getting tested and treated for it and I just turned 34!. I had a sleep study a few years ago and they did find sleep apnea and I was told you couldn't have Narcolepsy and sleep apnea, which is nonsense, but that put my Narcolepsy diagnosis on hold. I continued to just push through the symptoms but when I fell asleep at work I knew I needed to look into it again. When I had my sleep study, the signs for having narcolepsy were there. I went into REM in just 7 minutes. Who does that if you don't have narcolepsy!? lol But this time I want to bypass the sleep study and will just get a spinal tap, which will test my hormone levels. I listened to what you were saying about having kids and feeling tired etc. And I just want to encourage you because I have 3 kids! For the first 6 years I stayed home with them, so when they napped, so did I! lol Trying to work has been a harder challenge but it would be a challenge with or without kids. Kids just bring more joy to you and more to live for. I have made it a policy now that when we all get home from work/school, we have a 45 minute rest time. During this time we can do anything quiet; watch tv, read, or take a nap. This is good for them because it helps them unwind after school and daycare, but it also gives me permission to take a little nap before the evening begins so I can have more energy. They usually watch a movie and my daughter, who I think has narcolepsy as well, will go take a nap. After our "45 minute rest time" the boys can go outside to play, I can make dinner and we can start on homework, but we don't do anything until we have that time!! lol You will find ways to adjust your life with narcolepsy with kids, just as you have without them. You obviously have the desire to have children and you have that for a reason. Blessings to you! -Amber
Thank you so much for this! I love the rest time idea for you and your kids regardless of narcolepsy. May I ask if you were on any medication before getting pregnant or while pregnant? That’s my biggest concern since I can live a pretty productive life while on my medication (Ritalin) but the idea of coming off before trying and having to be off while pregnant is what worries me.
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!!
very helpful, thank you
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.
Big respect to you! Beautiful woman
So well spoken and get the point across please give us more examples of Daily life struggles before you found some relief with medication. Thank you
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.
I am almost graduated from high school and this video helped me that with my future. With jobs I know that I’ll survive and how to cope with narcolepsy
First of all thank you for making this video because there are not alot of sites or what ever for people with narcolepsy to talk about it and come together (at least none that are active at in my country).
I was also diagnosed with narcolepsie when i was 16 (now 23), at first i thought i seriously lost it because of the hypnogogic hallucinations. These are in my opinion still the worst and i dont think i will ever get completly used to it.
About being pregnant i heard that most women feel beter during their pregnancy because of al the hormonens the docters could not really give an explaination as to why it reduces the sleepyness but i dont think you should worry about it to much for now.
There is a youtube video about narcolepsy where Tom Scammel a neurologist from Harvard tells about narcolepsy in a way thats easy to understand.
Big hug from the netherlands
Ps: sorry for any mistakes
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.
@@ContentConfessional Thank you 😊
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! I am to be tested for it. I am always so tired. I do have RA I have had sleep paralysis for years and so scary. I get company and I sit down then wake up they had left. I can't have phone in hand on tiktok I send vids to friends when I fall asleep and my finger holds in on screen. That's embarrassing. The more i learn the more i realize i must have had this for years. Its just so sad howci struggle to get work done when always tired.I get the cataplexy i learned about recently and go limp when something scares me and fall. Could not figure why my legs would not want to move to get back up right away. Falling one time on cement sidewalk I was banged up and bleeding. Can't wait to get help on meds it's just awful.