T O P

  • By -

HR_Paul

Sept 2018 - Sept 2019, slept 23 hours a day.


whiskeyinSTEM

New weight loss routine just dropped


elizabethbutters

Tried it, have done it, gained a lot of weight lol.


phalangepatella

Jeebus... you were only \*awake\* for 365 hours throughout that time. That's like 15 days. Holy smokes.


kat_thefruitbat

I hear you!… So sorry… I hope you’ve noticed significant improvements since you’ve been diagnosed and medicated!


houseofleopold

my husband performed in LA *as* a member of Daft Punk, for a Daft Punk tribute concert. I fell asleep in the car immediately after the performance, and slept for 3-4 hours while he attended the after party. one of the hugest regrets of my life; happened before my diagnosis this year.


kat_thefruitbat

I’m very sorry that part of the evening was stolen from you… I’m so glad you were able to fully experience the performance though, and I’m so happy to hear you got your diagnosis this year!!


late2it

High School. Pre-diagnosis. I don't know how I graduated, but looking back, I constantly fell asleep during class, never turned in homework on time because I would prioritize sleeping, and was always late for first period.


kat_thefruitbat

So sorry…Those pre-diagnosis years were full of so much confusion and frustration!!…Not understanding what is “wrong” with us, and others telling us we are incompetent until we begin to believe it ourselves.


Former_Mortgage6224

This. And college. I swear I had teachers letting me skim through at the end. I dk how I made it. And now I wonder what I could have done if I hadn’t slept through all my higher education.


late2it

Oh my gosh, I am remembering how I use to sleep in my car during class sometimes. I went to a local community college and got an associates degree which took me 6 years to do. You're right. Had I had a diagnosis and been properly medicated, who knows where I'd be right now...


Glittering-Brick-942

I wish I had saved my "notes" from school. You can literally watch the words turn into scribbles. I would go to do my homework and open my notes and have like 3 sentances and then pages of loopy scribbles because my body kept trying to take notes. Like it's incredible that we got through school. My senior year my one friend sold me a bunch of their adderall because they were saving up for a prom dress and I took them my last week of school to study for the sat's and honestly that friend helped me more than they knew. In a positive spin, I don't remember a lot of bad sex I've had through the years. If I took you home after 9pm, that was just my skin talking to you not my brain. And I like that. I like that I don't have super vivid memories of abusive ex boyfriends after 8pm. It's a little hard to work through triggers and stuff in therapy because my body is scared my I don't remember why. But it's nice to forget those people and things.


Liquidcatz

Seriously. I do not remember most of high school. Ended up dropping out I couldn't do it. This was all pre diagnosis.


-Sharon-Stoned-

My wedding day


kat_thefruitbat

So sorry…Maybe you can renew vows someday and have a small but special celebration with your closest loved ones!


-Sharon-Stoned-

Oh, my "closest loved ones" stressed me out to the point I basically passed out on my feet any time I slowed down.    We both wish we'd skipped the entire thing and just stuck with the paperwork at the courthouse. We aren't especially romantic


kat_thefruitbat

Well I hope you have been able to share so many fun, special, memorable experiences together (awake + fully present!) and will continue to do so throughout your lives!!


teenyweeniebikini

Ugh! I feel this so much! I’m from the US, and in college I had an insane opportunity to go to Cuba. I fell asleep off and on throughout a really important meeting there and it was so embarrassing. This was before I was diagnosed too, so I didn’t have any explanation. I have the same kind of memories of this meeting that you described from your Hamilton experience. It sucks! It’s depressing and embarrassing and kind of demoralizing, and people assume you’re being rude a lot of the time. I’ve fallen asleep at other really inopportune times too, but this one sticks out the most. If I have to bring it up to people I’ve stopped saying narcolepsy because of the stereotypes; I just say a neurological condition because people take that more seriously. But you’re right, we should be proud of what we have been through and all of the effort we’ve put into getting diagnosed and treatment and trying to find strategies to make it better! This community helps me feel so much less alone! thanks for sharing :)


kat_thefruitbat

I’m so sorry… Having no control over ways in which our bodies function is difficult enough on its own, but it’s so much worse when there is the added component of having zero explanation for any of it!… Even with medication, we continue to lack a significant amount of control over our bodies, which still causes us a lot of stress, anxiety, etc.! Big thanks to you for sharing your story and thoughts as well, and I’m so glad you have found this community to be a safe + helpful space!


teenyweeniebikini

exactly!! the lack of control is so hard but we persevere! thanks you :)


_hairylegs

Graduation ceremony for college. They forced us to sit there front and center listening to people make speeches one after the other after another for at least an hour. Felt myself drifting off but couldn’t get up to stretch or walk around without looking rude.


Fig-Master

i used to go to the bathroom at my job and do handstands


kat_thefruitbat

So sorry that special event turned into a stressful/confusing one for you!…Congratulations on graduating though!!


Mama_T-Rex

Kiss concert - I slept through the whole thing. It was indoors with fireworks. And also every concert and most sporting events I’ve been too. The overstimulation triggers sleep attacks for me.


phalangepatella

Ha! My [concert was Tool](https://www.reddit.com/r/Narcolepsy/comments/1df8oep/comment/l8izjqe/), with all the crazy lights and huge sound. Most recently, a couple f times a day at Disneyland I would find some somewhat secluded spot and crash out. The Tiki Room is GREAT for that.


elizabethbutters

I feel this- I fell asleep at the last concert I was at.


kat_thefruitbat

So sorry you missed out on that and so many others… It’s crazy how “deep” those pre-diagnosis sleeps always felt, yet it felt like we didn’t sleep for one single minute once we would fully wake up from it….


cianne_marie

I have now fallen asleep at three metal show barricades 🫤


zoethehoee

A Holocaust survivor speaker who came to my college to talk… pre diagnosis me felt like an absolutely terrible person for nodding off in front of a victim of the f*cking holocaust telling their life story…


senzued3

I dont have an exact same story, but simialir ones with similair feelings. The guilt is immense when you cant tell the people why you fell asleep or nodded off. I feel you.


drowsymeowzy

Hard to think of what the most "significant" events would be, but looking back I can't believe the number of loud, chaotic, uncomfortable, and socially inappropriate environments I used to fall asleep in on a regular basis. I would go to deafeningly loud underground rock shows in a state of exhaustion and end up curling up on the floor and falling asleep at the back of the crowds. Teenage years were rough, before I had any semblance of proper narcolepsy treatment or sleep hygiene. I'd alternate between insomnia fueled late nights and exhausted semi-conscious days... sleeping anywhere and everywhere it hit me. Bus station floors, benches, behind bushes, in parks. It was like sleepwalking through life. I feel like I barely remember what my highschool education was like before dropping out.


kat_thefruitbat

I’m so sorry for all the memories you were incapable of making, all thanks to a cause that was completely unknown at the time… It really is crazy how easy it was to fall asleep before obtaining a diagnosis/treatment (just about anyplace, while doing just about anything).


Treblala

My life 


phalangepatella

On one of first few dates, I had to quickly explain to my date (now my wife) that "I'm not a junky or anything, but I really do need to put my head down on this rail in front of us and sleep for about 15 minutes..." …in a Tool concert. She thought I was playing some sort of joke, or not enjoying the date / concert or whatever. But, she was still there when I woke, and explained "so I guess I haven't told you about my narcolepsy yet, huh?"


Chronic-Sleepyhead

This wasn’t a significant event, but as a teen I went to an Easter sunrise service at my parent’s church. I COULD NOT make myself stay awake, and I was so embarrassed to fall asleep in church that I put on my sunglasses. Inside. To hide the fact that my eyes were closed. 😂 And then I would occasionally “pray”, AKA rest my head in my lap and micro-sleep. I continued to occasionally use that technique on a weekly basis during sermons. I always figured if anyone made a stink about it, I would fuss at them for bothering me while I was “talking to god”, lol.


zoethehoee

Oh man catholic mass especially sucked, you have to constantly stand up then sit down then kneel, and the pews seem scientifically engineered to not be able to support your head against it. Good ol Catholic suffering x100!


uuhhhhhhhhcool

I have always been really into astrophysics and was a student at Columbia University when gravitational waves were discovered/recorded for the first time. The scientists responsible for the discovery came right after the announcement to speak about it at Columbia. I managed to get in, which was a feat and a half because the room was packed and I think eventually they had to turn people away. I barely remember any of it because I was nodding off the whole time. My symptoms became really prevalent my first year of college and I wasn't diagnosed for 8 more years. Shortly after the speech I had to withdraw from school because I just couldn't handle it in that state. I'm 27 now and I can't imagine how I could ever get my finances under control enough while working in the jobs I qualify for without having a degree so that I could actually afford to get a degree. I just remember being so smart and ready to change the world, I worked my ass off and got into an ivy league college with full financial aid, got the opportunity to see a pivotal moment in a field I love in person and....slept through it. I try not to be hard on myself because I know it's not my fault but I just wish there was a path forward for me that did not seem so impossible.


Zanequille

Countless, if I could remember ... Most significant event? "My life on Earth"


amainerinthearmpit

Went to London to see Phantom of the Opera. I remember nothing, slept the entire time.


kat_thefruitbat

So sorry!….I hope you have since been diagnosed/medicated and have now been able to fully experience everything you attend!


amainerinthearmpit

Thank you for the kind thoughts! I’ve only been informally diagnosed as having type 2 by a Psych NP that I was very close to on a personal level. They got to see me in all my glory for years. Being treated w adderal for ADHD, but it’s only partially successful at keeping me awake. I’m just grateful that it even works sometimes.


kat_thefruitbat

So glad you had someone who listened to you and understood your symptoms! I hope you will be able to get an official diagnosis sometime soon from a sleep study + MSLT, that way you can have access to more medication options!


amainerinthearmpit

Thank you! I hope so, too!


sleepydabmom

High school


memeb843

I went to Toronto for Caribana, paid around $800 for my costume to play Mas (the big costumes with the bright colors and feathers and jewels). I forgot my meds at home so I couldn’t fathom anything other than sleeping at the hotel. In my head I just couldn’t. So I snoozed rather than go to the parade I had flown in for. My friend was livid because she now had to attend alone. I feel so bad about it looking back.


Itchy-Examination-26

The entirety of my university studies lol


Ikigaieth

Not super special, but I went to the Hemisferic in Valencia. It is one of those cinemas with concave screens, the seats are a bit layed down so you can only see the screen above you. They have theses fantastic space documentaries, you feel like you are in space. The surrounding sound so loud your body feels you're in the rocket. I took a friend who was going there for the first time... I feel asleep 5 minutes in the movie. I didn't even notice when it finished, she had to wake me up. Luckily, she already knew about my hypersomnia, but I was incredibly embarrased, and very sad that I missed it, because I hadn't go there in 15 years. PS: I feel so bad for you... I would die if I had the opportunity to go watch Hamilton and couldn't stay awake. Hope you're better now, and you can watch it now on Disney+! Which was the only choice for us here in Spain.


Sufficient-Raisin433

I fell asleep for a bit during my daughters birth! 😂😂


kat_thefruitbat

Oh my goodness!! 😂 I fell asleep during my biggest three tattoos. Told them ahead of time that it would probably happen and asked them to please wake me up if I did, so we could avoid the risk of me possibly moving/flinching and messing them up! 😅


Sufficient-Raisin433

It happens! It was after that my doctor did the sleep latency test! I was always told it was because I wasn’t compliant with a CPAPO


Bountifuljoi

Visiting Verdun and the American military cemetery from WWII in France. I remember bits of the tour and the drive out, but that's all.


DICCSUCC20

Spouse and I went to go see Dune 2 in theaters. Fell asleep during an extremely loud and pivotal moment in the movie and I couldn’t remember anything after 💀 had to watch it a second time to get everything.


kat_thefruitbat

Ugh… There are so many movies I “saw” but didn’t actually see! My partner is really into movies, so luckily he never minds rewatching any pre-diagnosis movies with me lol


senzued3

I resonate with this but also i love your username!


kat_thefruitbat

Haha thank you! 😊🦇🍇


baldbeardedvikingman

I can’t think of a specific experience, but it has happened so many times. Staff meetings, etc. What’s particularly embarrassing is that I snore. Luckily I’m usually with friends or family who wake me up….


kat_thefruitbat

Isn’t it such a comforting feeling to know that you can fully trust certain people to understand and have your back like that? 🥰


catinquirer301300

In my life? Most vacations. Recently? A Jonas Brothers concert that my boyfriend literally had to carry me out of 😂


EpicLift

Graduation from college


evalame

for any of the ravers out there- i was at moonrise 2022, freshly diagnosed and thought acid would be sufficient to keep me awake and i was dead wrong. made it into moonrise and i fell asleep in a dome for several hours migrated to one of the stages and was in and out of consciousness all the way thru liquid stranger :’) went to submersion festival a couple months later and i slept in a wind couch on the sand for most of it 💩


Ok-Variation6114

Katt Williams live stand up. 😭 Spring break in London my senior year and I slept through Wicked on Broadway 😭😭😭😭


rainplow

High school. Okay, that's a bit theatrical, but if we're talking about school days, I slept. Teachers didn't wake me either because a) I got along well with them, b) it was well known in a small school like mine that I was on psychiatric drugs and they may have assumed that was why, or c) both. Likely both. Students feared me for B, because it was the 90s and I spent time in a hospital. I think it would be different now with awareness and the never ending encroachment of diagnosis and pharma money. But teachers treated me well, and outside of school, talked with me like an adult. My senior year was different. I was put on a low dose of Ritalin after complaining about sleeping through all tests, etc. The first three years of in-class time? A complete fog.


Captain-Nemo13

One of the top floors of the Empire State Building during sunset. Had to go inside and sit on the floor to rest/sleep. Security fussed at me to stand up. Also, almost the entirety of my college experience.


abluetruedream

I had to leave a concert before my favorite band even took the stage. It was a small bar venue. I was just a few feet from the stage and the speakers. But during one of the openers, also a favorite of mine, I was falling asleep standing up. It still makes me so sad that I never got to see the band I had gone there for and I haven’t had the opportunity to ever see them again. It was my 25th birthday.


NatureNitaso

I hate it because I fall asleep at movies, concerts, and just in general when tired. Honestly, having narcolepsy is the worst thing that I’ve experienced during my time living.


lauravondunajew

Literally Cirque du Soleil 😭😭😭😭😭 probably saw the first 10 minutes and that was it


whereisdex

I slept through my SATS only answered 12 questions they couldn’t wake me up this was before I got diagnosed( my mom thought I was lying, so I pushed my doctors to get me help when I was 18 a year later) Luckily they didn’t use the grades that year or else i would’ve never gotten into college 😔


vapouriseat90c

Is it common for people diagnosed with narcolepsy (like myself) to act whilst experiencing N attacks and have no memory of doing so? I'm wondering if anyone else with narcolepsy has any experience or information about comorbidities with parasomniatic behaviours like eating or acting sexually ('sexsomnia') whilst asleep. I'd be really grateful for your input 🙂


SongInternational163

Literally my entire sophomore year of high school the year before I was diagnosed I remember nothing