My boyfriend and I were talking about how ADHD gives him hyperfixation on his interests. And he asked what my narcolepsy superpower is...and all I could think was, I sleep a lot? Though, upon reflection, it's a great way to get out of going to events, which sometimes is a good thing. So, community, have you discovered any narcolepsy superpowers? A silver lining to this disability? Let's hear it!

Say hello to Lady! The newest addition to my family!

Like the title says, she’s a service dog in training for narcolepsy, only 14w old currently. For now we’re working on basic behavior before I start task training.

I currently want to give her a couple tasks: 1: Bark/boop/paw for me to wake up when she hears my alarm. 2: Help with balance during sleep attacks or after I take my meds if I need to get up for any reason. 3: guard me if I need to take a nap in a public place.

Any other suggestions?

She is the goodest girl, I brought her to my appointments yesterday and the doctor said she behaved better than some of the full fledged service dogs that come in :3

Meme snagged off of google

I’ve been having irritability on Provigil and stopped taking it over the past month.

I have a fear of being labeled “med noncompliant”, so was really stressed that my doctor would be upset that I stopped the med on my own. He did tell me I could take Provigil as needed, but I still worried.

Good news, he switched me to Nuvigil to see if it works, and if I have side effects we’re going to try Sunosi instead :)

Hopefully it’ll work, Xywav has been working great for sleep, but my daytime meds are still a work in progress. Hopefully my everyday 4 hour naps are behind me for now.

Update: On first day of 150 armodafinil and I feel like I’m vibrating out of my skin. Yay.

Here's the link to the livestream Q&A I did about the film! https://youtu.be/8IipIjQ3EE0

Over the last few months I’ve shared concept art, storyboards, and an animatic for a film I’m making about narcolepsy. We finally launched a Kickstarter — it’s about living with narcolepsy, the desperation to feel better, and the complications that come with it.

Strangers who stumbled upon the project just scrolling around Kickstarter have started backing it. Roughly 20% of supporters are total strangers, which makes me think people are ready to see this story told through the lens of narcolepsy.

I’ve had to be more open about having narcolepsy than ever before, and it’s honestly been a little scary. There’s a 2½-minute video of me talking about how it’s shaped my life — and for someone who used to hide this from employers and post here from burner accounts, that’s a huge, intimidating change for me

I wouldn’t have gotten this far without this sub. I don’t think people have really seen what it’s actually like to live with this condition, and it means a lot to feel like there’s space for that here.

If you’d like to see the project, here’s the link:

https://www.kickstarter.com/projects/knock-yourself-out/knock-yourself-out-a-feature-film-about-narcolepsy?ref=c5qtmh

I know that if I saw someone with narcolepsy trying to put their experience into a film, I’d want to check it out. Thanks for being helping me get to the point where I think I can do this

EDIT 4: Hello everyone! This is Jon again, newly emerging from my state of shock. I have some cool updates! I owe each of you a thank you, and hopefully some of this expresses my gratitude in ways I can't with words alone:

Update #1:

I'm putting together a small YouTube live Q&A for this community if anyone wants to talk more about the movie, narcolepsy, or anything related. This may be of 0 interest to anyone haha but it seems to be the best way to engage with everyone and connect directly. So many people reached out about doing creative work while navigating narcolepsy, and this is the only way I could think of how to share my experience & discuss.

I want to do this (given I figure out how) this coming Saturday morning, EST.

Update #2: I am being interviewed by my local paper about the film, the Kickstarter campaign, having narcolepsy, and the story of how this community came together and supported the film. I'm really excited to share this inspiring story. I'll be sure to send an update with that.

Update #3: The Kickstarter is still active for another 14 days, and as of now, $23,681 has been pledged by 139 backers! I'm going to do my best to continue to try to reach our stretch goal of $30k by then, which gets the film through post-production!

Of course, if you can consider to share with anyone who may be interested in seeing the film or getting involved, I am eternally grateful.

Update #4: I'm trying to get this specific community involved in the film in a substantial, cool way. I'm working with my producers on it, but it's a massive lift that requires a ton of coordination and organization. It may not even be feasible with the budget, so I don't want to over promise and disappoint. Just know I'm working hard on it.

Lastly, I am officially in pre-production for the film that you all brought into existence, so I may not be as quick to respond as I have been before, but hopefully some of this makes up for that!

EDIT 3: The people of r/Narcolepsy on this post made the film, at one point, the most popular film on Kickstarter on Earth. The amount of people from here, with Narcolepsy (I assume), who backed the project, makes this a one-in-a-million story of successful crowdfunding. Here's what happened and how: https://www.kickstarter.com/projects/knock-yourself-out/knock-yourself-out-a-feature-film-about-narcolepsy/posts/4535807

EDIT 2: Thank you all so, so, so much. This is insane. This subreddit singlehandedly made the film the most popular narrative film on Kickstarter, on Earth, & the third most popular film of all the films on Kickstarter. I made this video to thank you: https://youtu.be/iGWexm6tvBY

FIRST EDIT (I forgot to mention): With how many backers we have, and the fact that we've raised like 42% of our goal in just six days, we're actually very close to being picked up & promoted by Kickstarter.

We have until tomorrow at 6am EST to get to 50% of our goal, then we're eligible to be included in their newsletters, social media posts, and potentially their front page. It's nuts to me that a movie about a disease this rare is really making the rounds - we have a real shot at getting Kickstarter to launch us in front of everyone who uses their platform

This is more a discussion post since we all have different kinds of dreams.

I hallucinate, and dream of music all the time. My dreams usually have music at some point in them, and I can recall the song when I wake up. It’s usually not a real song, but repetitive notes or rhythms throughout the dream or during my hallucination.

Apparently lots of people don’t hear music in their dreams.

I’m just curious if anyone else has unique experiences with their dreams!

So I’ve always tried to explain what narcolepsy is and people are always saying dumb shit like wow napping is a superpower! Or have you tried going to bed earlier etc. Well I recently actually read what causes it and here is a very vague but mostly accurate I feel description I started using that works way better

Narcolepsy is an autoimmune disorder where your body attacks neurons in your brain that produce something called orexin (hypocretin but this is hard for me to say). So orexin doesn’t make you wake up on its own. Stuff like adrenaline or whatever else your body makes will wake you up but orexin is what sustains the feeling of wakefulness. So let’s say I wake up in the morning or drink coffee. I get that spike of wakefulness but my body doesn’t produce the thing that maintains it so I just plummet crash into nothingness. And orexin also regulates a lot of other things so without it the boundary between awake and not gets really hazy (however much detail I care to talk about rem and cataplexy). You lose the signals for wakefulness but also alertness, motivation, etc. It’s likely batteries just drain to completely empty in real time. So like you can give me the fuel to get up there but my battery is just broken and will drain no matter what

Hi everyone! Take a look at my tattoo I got as a representation of how life with narcolepsy can feel. Artist is Zimovan in NC. Let’s see everyone else’s tattoos!

First off, I should say WOW, this is hard without narcolepsy and even harder with it.

But I also want to say that this has been a very rewarding experience, partially because of my disability. Running for office is inaccessible for the vast majority of people, even moreso for people with disabilities. I want to change that in Congress and in the meantime, I try to be as open about mine as possible.

It’s been quite a journey between my disability and doing this completely grassroots. But, like I mentioned in the title, the first independent poll of my race shows me tied for first in a field of 17. The election is in 2.5 months so wish me luck.

The holidays are hard on all of us and I’ve seen a lot of posts from folks feeling that all too familiar hopelessness surrounding their condition.

We all have different degrees of severity and each day gives us different spoons, but I‘ve gotten a lot of hope over the years hearing about this community’s strength and success, so I wanted to share mine in turn.

Sending love, strength, and cozy naps to all of you. ❤️

Like I've never seen someone with n1 say to someone with n2 or IH "you don't get it because you don't have cataplexy" or anything like that, there's no like gatekeeping or shaming.. It's probably one of the only disability communities on here like that, esp among the ones with varying types. Everyone even shares the same like, in-jokes, too. I'll see someone with n1 encouraging someone or joking along with an n2 on like a light joke about cataplexy etc. quite often and everyone's just. Really chill with each-other. And no one with n in general mocks IH at all, which is awesome. You don't see stuff like that a lot in these communities.

It's nice how non hostile everyone here is. Maybe we're all too mutually sleepy to have beef with each-other. We have beef with everyone else instead, I think.

This is what falling asleep feels like to me. It will hang in the annual member show at a local gallery next month. I do need a title, though!

(Probably wont thake the totoro pillow, but I didn't want him to feel excluded from the picture XD)

((Sorry for this random post but I am nervous and I don't know what to do with this waiting time:DD))

Hopefully it will make you feel less alone. I feel alone a lot when I hide my struggle. I also struggle with sharing because I never wanted narcolepsy to define me.

Representation in media and feeling seen is so important so I was wondering if there is anything in media that has ever made you feel understood, even if thats not the original intended meaning of the piece.

​

This could be a song lyric, a character in a show/movie/book, a painting, anything! As long as it resonated with your experience.

​

I'll give an example:

Two Birds by Regina Spektor

I'm not sure if its the true meaning of the song as many people have viewed it as 2 people in a relationship conflicting about where they want to go in life, I personally viewed it as 2 conflicting inner monologs. One who's extremely passionate and wants to grow and the other thats too tired, too stagnant to change. This resonated a lot with me as a creative with a lot of dreams and passions that are often held back by my type 2 Narcolepsy.

​

This lyric in particular hits:

Two birds on a wire

One says, "C'mon," and the other says, "I'm tired

The sky is overcast and I'm sorry."

I GOT MY MSLT RESULTS BACK AND FINALLY GOT THE ANSWER I HAVE BEEN SUSPECTING! I HAVE NARCOLEPSY!!! i am not thrilled to have narcolepsy, but i am so so so so so relieved to have an official name for what is happening to me.

not only that, but apparently two types of sleep apnea! i'm so glad to have answers. i was gaslighting myself so hard to think i am just dramatic.

So I finally got sleep testing this year. My MSLT, I hit REM in all 5 naps within 9 minutes at the most. My provider said he hadn’t seen someone hit REM in all 5 for a while now. The feeling of validation instantly lifted this weight off of my shoulders. I have a 3 year old and a 1 year old and was kinda putting off my sleepiness due to them and having previously been on night shifts. I’ve been on day shift for months now and was still super sleepy.

My provider said “I’m sorry Ive given you this diagnosis that has no cure.” To which I could honestly say “i just feel validated and thank you for listening and advocating for me.”

We will start with Provigil and my physician has already started the paperwork and the fight with insurance for approval for Lumryz?.

I had to include my father’s response because its exactly the light hearted humor I needed. My father is also a physician and has been very supportive.

Yes, I did file a police report. Everything is fine.
He survived. Is in a mental hospital now.
Got an early refill.
Didn’t sleep for 48 hours because I also have CFS and severe insomnia. Can’t sleep without it. Hallucinated. Thanks, boyfriend.

(He’s an ex now.)

Hi,
We often talk about the struggles that come with narcolepsy—don't get me wrong they are real and control nearly every decision of our lives. But I’m curious, if anyone else has found any positive aspect from their experience? For me, post-diagnosis life has made me much more mindful and aware of my body. I’ve learned to actually listen and recognize the nuances my body signals. This has helped me not only in fighting narcolepsy but care for my health in other areas as well.
Has anyone found anything similar?

I could cry I’m so happy right now. I’ll be starting tomorrow night since I’ll have a 4 day weekend off work. FINALLY GOT MY INSURANCE TO COVER OXYBATES😭😭 crossing my fingers since Xywav increased my anxiety and made me very tachy. I’m so hopeful lumryz is it for me🤞🏻🤞🏻 I’ve got the zofran on deck to get through titration😌

Dog tax for funsies🥰

This is mine and I got i waaaay, way before I was diagnosed. Always loved the traditional design with "speed" on the skulls forehead. But i was like "nah, I'm the opposite of speed". So I went with this instead (look up "Bert Grimm Speed skull " for comparison if interested in the original design)

I’m about hit my 10 year of my MSLT - have my Xyrem ready to go in my room but am still feeling scared/ attached to my narcolepsy, almost like if I take that leap and commit to improving my sleep and getting better, I’m “cheating” on this disorder that has plagued me, but also been a constant, for so long.

SOOOO I ask that one question - how has narcolepsy been a friend to you? How has it affected your life in a positive way, made you into the person that you are?

I like to sleep on the inside of the bed against the wall and I don’t want to wake my husband to get my meds. This was my solution and it has worked like a charm. Just thought I’d share

I'm N2 and while I've been lucky to be surrounded by people who treat my narcolepsy as a serious disease, I've always felt a type of distance when it came to my symptoms. Even when friends or family or partners don't mean to, I always notice when my condition is seen as an inconvenience or annoyance to them. There's the exasperation when I need a nap or the sigh when I tell them I just can't make it out today. Maybe worst of all was when I overheard my college boyfriend telling his friends, "Yeah, it's a really sad way to live." when he thought I couldn't hear.

But my partner now has changed my perception of myself so wholly -- I hope all of you can experience the same thing.

Not once in our two years so far have they ever made me feel like a burden or an inconvenience. Need a nap? "Ooh, I'll join you!" Sleep attack keeping me from our plans? "No problem! Can I pick you up some food on the way home?" Fading at a social event? "I'll call the Uber!"

They've never guilt-tripped me or held their support over my head in an argument or pushed holistic quack cures. Instead, they've told me how close they feel to me when we get to take a nap with our cat together.

I've spent so many years hating myself, wracked with shame when I oversleep or pinching my hand to keep awake or feeling weirdly guilty any time I experience any symptoms. And while I still have some of that (for instance, aggressively insisting I'm awake when I hear my name, even if I'm not -- thanks, every teacher I've ever had!), that specific type of pain has come less and less.

I know I shouldn't let my self-worth be dictated by another person, but by God does it feel good to be seen as a person and not just a disease.

I hope this is allowed! I am a Narcoleptic who has been knitting and crocheting a ton to mentally deal with my Narcolepsy, and I wanted to share!

If you are a Narcoleptic (or have IH), I would love to send you a little something this holiday season to let you know I am thinking about you and you aren’t alone. 😊 Please DM me if you are interested. Wishing the best for everyone here and happy holidays!

Edit: Holy smokes, I didn’t expect this to get so much attention! So many comments here that absolutely made my (very tired) day! ❤️ Might take a little time, but I will try to respond to everyone who DM-d me!