Excellent discussion

I have a close friend that is in denial about this sleeping disorder. I’m very concerned, he falls asleep anywhere!!!! NFL games, NBA games, NCAA basketball games that are sold out and loud, I legitimately mean anywhere! My wife caught him dozing off on a trip to an out of state air port, she said his eyes were closed on the Highway! He just told Me he got in trouble at work for falling asleep during a virtual 1 on 1 meeting with a super visor! Any advice?

Thank u for sharing❤ but unfortunately stimulants r not fully helping

what medications do you and your friend take that work for you please let me know I am desperate for a solution to my day time sleepiness?

Thank you for posting this video

Thank you for posting this video

I was diagnosed while working from home because of covid, which was great. We are now being pushed to go back into office 3 days a week. I have Type 1 and cat episodes for me, occur mostly in morning hours and I have requested just being allowed to work in afternoons in the office and from home in the mornings. I have gotten a letter from my doctor, but am feeling push back from HR. Is there any place i can get guidance on how to show that i should be given some accomodations. This company is totally set up to work from home and my position does not require me to be in the office and I have had times when I have actually asked to work an evening because network is less busy and I accomodated them. Should I contact a lawyer?

Can u give me your dr name who helped u?

Hear you guys talking about the different things you have experienced with brain fog, micro sleeping, automatic behaviors is in a way validating to me as I struggle to express what I go through daily. The way I verbalize my brain fog is it feels like you are doing tasks intoxicated in a way. I feel like nobody really understands what this is like and the struggle caused by this disorder

It gets me really sad but yes good sens humor is a plus.

I need some one to talk to concerning this

I know this is an old episode but I just had to comment. Your story really touched me as I also went undiagnosed for years. I had a similar incident in school only when I fell asleep a teacher slammed a book next to my ear to wake me & got upset with me. I’d fall asleep on the bus but I never knew what any of this was. Fast forward 20 years & at 29 I was officially diagnosed with Narcolepsy type 1. It all makes sense now & I feel like I do have an understanding of Narcolepsy but I’m just struggling to balance it with everyday life. Naps, pacing myself, knowing my limits but still try to function like a “normal” person and seem “normal” to everyone else. The worst part for me so far is the sleep paralysis. It literally feels like someone is forcefully holding down my arms & legs, I can’t move but I’m experiencing a vivid nightmare. It’s the worst! Sleep attacks I’ve gotten used to & Cataplexy too. Thank you so much for sharing your story it feels so good to be seen 💜💜

I was in my local ER for somethin g unrelated when I had a cataplectic episode. I began head bobboing and losing strength in my core. The nusre saw and asked if I was alright and I said I have narcolepsy followed by a complete cataplexic episode in which I collapsed to the ground with my ass in the air and my laptop bag tight around my neck. I was left like that for over an hour. I heard people ask if I was alright and if they should just leave me ther4e and the nurse said everything was fine. someone finally removed my laptopbag so I could breathe freely but they left me there on the floor like that for over an hour. I sleep walk a lot and have sleep paralysis too.

Brain fog is a nightmare. What was the question again?

I didn't know I had a sleep specialist or narcolepsy specialist. Can I get his/her name/number, please?

The more I learn about narcolepsy the more I understand why I've been going to doctors for help for over 30 years. Doctors never test or diagnose correctly.

If people need coffee and energy drinks to make it through the day after 8 hours of sleep they need to be tested.

I was in the military and doctors didn't care. I had to wait 40 years to find the answer. Doctors only see one problem and treat for one. Narcolepsy has many symptoms. It is very hard to live with.

Awesome for speaking out about Narcolepsy. I am happy for you that cataplexy doesn’t hold you back this much and that you can play at the highest level. I wish you and your family all the best. 🙏🏻

I have Tourette’s and I move around while having them, I gave the shadow man the middle finger.

15:40 This is Valuable and helpful to some. I favor using better medication, even high-dose, instead of napping. I feel better this way and reclaim some freedom from Narcolepsy. I am less dependent on circumstances and do more as I like and not as I need to do. Freedom and self-efficacy is essential and vital to me. While naps are important to some Narcoleptics, others could benefit from somewhat overriding these urges by sticking to meds. Some professional areas make no sense with napping. Narcolepsy is limiting enough. I think the quality of life that meds can provide is still underutilized.

The experiences everyone shared are so helpful to hear because we JUST discovered my mom is experiencing Hypnagogic & Hypnopompic Hallucinations. We thought she was seeing spirits!!! Thank you!

Thanks for sharing your story. It helps for me to one day share my own.

Just discovering this for myself past few weeks- also experience this playing tennis- my fav sport… makes me feel better hearing you all discuss cataplexy and advise - going to book with neuro Md just found- thank you!

❤

I think it should also be addressed how sleep specialists are only knowledgeable on common sleep disorders like apnea…

WOW! Super informative! Thanks so much for bringing these experts together! ❤

I just went to a sleep specialist and she didn’t believe that I was falling asleep 50+ times a day on my bad days, about 20 on a typical day. She told me it doesn’t make sense that naps don’t help me. Didn’t understand why snacks didn’t keep me awake while driving.. So many doctors are not educated…. Somehow even sleep specialists

I'm a narcolepsy 1, Periodical limb movement syndrome, night terrors, I act out my most violent dreams it took 32 years to diagnose my narcolepsy despite frequent cataplexy that was (after a 4 day epilepsy monitoring) diagnosed as stress enduced seizures. I agree the movie portrayal is funny but it is not narcolepsy. Narcolepsy is a misunderstood VERY strange and EXTREMELY complicated condition.

Hi there how are you able to start your proposal start when you finally figure out your diagnosed with narcolepsy or go back to your childhood where you think yeah I probably did have it but no one noticed or do I just jump into where I’m currently at 10 years in and still struggling I would like to talk more about it with one of you maybe more through email if you could lmk if I am able to send you my contact info. Thanks love the videos.!!❤

"...I can keep a narcoleptic awake" haha, That's hilarious. He is probably going to tell that story for the rest of his life.

This was so beautiful and insightful!!! Thanks so much!

Bob and Margaret's relationship is inspiring.

✊ i always wonder if narcoleptics should be together. would be cool to find out more from that perspective. #sleepyheadsunite 😅

💘 *Promosm*

I have narcolepsy and it destroyed my career dreams and hopes. I've always had to work jobs that no one else will do and I don't make very much money because of it. That has eliminated me from dating any women who are not either homeless or living with their parents. I have a master's degree, I'm a published author, I keep in great shape, and I'm an all-around great guy but for men who aren't drop dead gorgeous, if you don't make much money you don't get to date anyone unless their life is on fire.

Hello Julie , I have also been diagnosed with narcolepsy. I have also written a book “The journey beneath her heavy feet” available on Amazon .

Thank you! You are giving me hope!!! You are an inspiration! ❤

I would love for you to speak with my son. He is a 17yo math prodigy who recently had to leave senior year of highschool due to symptoms of narcolepsy. His story is so similar to yours. 😢

I thinks it's a bit misleading to use narcolepsy t1 as hypersomnia with cataplexy. Narcolepsy t1 is defined as lack of orexin, which is hard to prove without a spinal tap. You can have cataplexy in t2.

Maybe coincidental, but before 1924, narcolepsy was extremely rare. This is also the time of electrification of lighting in the US. Regarding narcolepsy and correlation with flu, short term insomnia is a common symptom of the common cold: Short-term insomnia and common cold: A cross-sectional study, 2019 Sleep debt?

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I'm Maria, from Brasil, ICU specialist type 1 narcolepsy. Hello guys!

I was an extra rare cuz I was diagnosed with narcolepsy and cataplexy at age 4-5 but it runs in our family its genetic so we want that surprised, but the doctors was because they said that typically known in middle age people

I didn’t even understand I was having microsleeps until I heard patients with narcolepsy describe it. It’s kinda sad for us that we deal with this.

Thank You for all of this wonderful information in one place. I'm still wondering some things about sleep studies and if there's any place that goes into more depth about how a sleep study is performed and the criteria that inform a diagnosis. Narcolepsy is often not predictable, so what if one doesn't present the necessary symptoms during the sleep study?

Ah man. I never related the sense of feeling like every place I’ve lived was haunted and all the strange things that happened, happened due to sleep issues. It makes sense.

The Raven by Edgar Allen Poe is a perfect example of all of this. The more I read his material, the more I’m convinced he was Narcoleptic.

Yeah I have Narcolepsy with cataplexy and get Sleep paralysis too. Some say it is a shadow man others a alien and others it's a demon. You can make it go away for good.

Casi no encuentro nada sobre esto en español. Y a quien colombia muy poco se toca el tema. Me gustaría hablar con alguien :'c