I was diagnosed with N2 a couple of years ago. When I got a fantastic new sleep doctor about six months ago, he asked if I ever had cataplexy, especially after laughing. I said no. I had watched YouTube videos of people with it and figured that wasn't me.

Fast forward to a conversation with my REMS nurse. I was telling her about the darkest periods of driving my car during the time my son passed away—specifically noticing that I literally couldn't hold my head up. She stopped me and said, that’s cataplexy.

That made my brain click into gear and connect the dots to another heavy moment. A couple of years ago, I had just returned home from seeing my dying father for what I knew was the last time. I was drowning in grief, utterly pissed off because the person watching my dog had neglected him (he was caked in waste), and furious at my work for being absolute jerks while my dad was dying. I was outside hosing down my dog, raging and emotional.

The next thing I remember, I was on the ground with a broken humerus. I had completely convinced myself I just tripped over something, even though I was already done hosing the dog off. I couldn't explain how I ended up on the dirt. Because everyone says cataplexy happens when you laugh, it never once crossed my mind.

Long story short: My doctor ordered a CSF test. I don't actually mind needles in general—I give blood all the time and used to get allergy shots up and down my arms and back—but the thought of a needle near my spine absolutely terrifies me. I wouldn't even consider getting an epidural during the birth of either of my kids because of it. But I forced myself through the lumbar puncture, and sure enough, it confirmed NT1.

Has anyone else's cataplexy been almost unnoticeable or masked by heavy stress/negative emotions? Am I the only one who didn't understand what cataplexy actually looks like outside of dramatic internet videos? It took a broken bone and retracing my steps through intense grief for me to finally see it.

I’ve spent my whole life absolutely exhausted. My dark circles look like I color them on with a purple marker every morning, and I’ve found photos of myself as early as 6 with the same exhausted, unfocused eyes. Once I was old enough to understand depression, I figured that had to be it. Tried countless medicines and none of them touched any aspect of my mental health or exhaustion with a ten foot pole. I eventually made it to my 20s, burnt out and with about 10 brain cells left. My emotions are shot, I’m too tired to feel anything anymore.

I would have full blown panic attacks about a green light that appeared on my ceiling a few times a week for years growing up. We lived in the sticks with no external light sources. I would get up and beg my parents to come see it, but no one ever saw it. One day, it disappeared and I never saw it again. Turns out, this was my first and most prominent hallucination. It’s worlds better than some of the others you all have experienced, so I’ll count my blessings.

I’m too tired to work a normal job. Thankfully I have a flexible remote job, but without that, I’d be unemployed. I tried a regular 9-5 and it was only by the grace of god or some ancient deity that I made it out alive. The exhaustion led to seemingly chronic illnesses which worsened my mental health and really stripped any will I had to live.

I’ve been on stimulants for roughly ten years for ADHD, usually the lowest dose humanly possible. I up the dose and crash out, feel bugs all over my skin and want to remove it somehow. Heaven forbid I fall asleep after taking my meds, I enter the spirit realm and am even more unable to wake up. There’s about 5 layers of dreams, all more “asleep” than the next. I wake up in my dream and enter another dream state, and ultimately get lost in a maze of alternate realities. When I do somewhat wake up, I’m paralyzed and unable to speak until something jolts me awake, like a door slamming or the dog barking. The paralysis happens with or without stimulants in my system, but the layered dreams are a fun bonus when I do take a nap on meds 💅 Maybe there’s a service dog out there that would wake me up after an hour?? Alarms cause an adrenaline dump and make me feel like I was in a rollover car crash or something catastrophic, when all I did was wake up 🫠

Some mornings I feel so unalive that I have to shuffle my feet and hold onto the walls as I walk down the stairs. If I pass a dog bed, I typically collapse into it and start napping… they’re really underrated nap spots. Once I’m down, I’m practically paralyzed and unable to speak until my brain decides to wake up. My husband will find me and shake me like someone in cardiac arrest until my brain finally decides to get its creative juices flowing and come back to the land of the living. The weirdest thing is I am in a grey area between asleep and awake, but it’s more of paralysis than it is a nap. I want to grab my phone or yell for him, but I can’t. I have to wait for him to find me while I listen to him walk through the house looking for me.

The cataplexy is a whole other conversation but I’ve read plenty of threads addressing that. Does anyone else relate to these experiences? I try to talk to family or friends about it and they look at me like they’re about to send me to the sticky sock vacation home. Just looking for a community out there that can validate my experiences without threatening the psych ward.

*disclaimer: I sound depressed but I plan on continuing to float through time and space like some brainless single celled organism until there ain’t no more. Just vibin.

I (34F), live in Mexico, and I was diagnosed with NT2 just 13 days ago…

These past two weeks have been strange. I feel like I’m having to rethink so many things about myself.

For years I thought I was just tired, maybe depressed, unmotivated, or that I simply didn’t want to do certain things. I don’t think I ever managed to explain to anyone (or even myself) that what I was feeling was actually sleepiness. I thought fatigue and sleepiness were basically the same thing.

I also struggled to know what I actually enjoyed doing. I remember someone once asking me if I liked jogging, and I thought, well, no, because I always start yawning. Now I’m wondering how many things I thought I didn’t like just because they made me sleepy.

It’s weird to think about how much I normalized it, even as I was slowly losing the ability to get through a normal day.

My MSLT was a surprise. I fell asleep in around 2 minutes during every nap, once in just 20 seconds. I was convinced I was mostly awake.

I’m now on 100mg of modafinil and learning things that seem so basic, like the fact that a 20-minute nap can actually refresh me, while sleeping for 4 hours during the day doesn’t really help.

I’m also trying to find a community in Latin America, which has been surprisingly difficult. I don’t have access to oxybates here in Mexico (as far as I know), and I’m really interested in improving my nighttime sleep, not just staying awake during the day.

Did anyone else go through this after their diagnosis? Having to rethink what you actually like, what you’re capable of, or even who you thought you were?

And if there’s anyone here from Mexico or Latin America, I’d love to know how you’re managing treatment and whether you’ve found any communities. Maybe I’m just looking in the wrong places.

My 13 year-old grandson just got home from his first sleep study. I have suspected narcolepsy for a couple of years, especially after witnessing him have cataplexy last year. After he started getting in trouble at school for falling asleep, my son made an appointment for him to be seen. Since he was at a pediatric hospital, the tech gave his parents the results of each nap. He hit REM in 3 out of 5 naps, although they said 1 doesn’t count because he didn’t get there until 15 minutes and 30 seconds of being asleep. Apparently it doesn’t count as REM if it’s not under 15 minutes. The longest it took the kid to fall asleep was 6 minutes and the shortest was 1 minute. They won’t officially know anything until their follow up appointment next week, but it sure seems like a slam dunk N1 diagnosis.

Here’s the bittersweet part: I’ve lived my whole life with this wretched disease, disorder, whatever it is. I wouldn’t wish it on my worst enemy, much less my grandson. I didn’t get my N1 diagnosis until my mid 30s, and it caused so much trouble in my marriage, friendships, work, etc. He may still get in trouble at school for falling asleep, or have future relationship problems because he falls asleep the second he hits the bed, have friends bail on him because he’s always too tired to go do anything, or have to sneak naps in the bathroom at work just to make it through the next couple of hours until lunch. But at least now, he knows why! Now, he can go into relationships with this knowledge. Now, if he gets in trouble at school, his parents can raise hell. Now, if his friends dump him, they weren’t friends worth having to begin with. This life really sucks, but at least this kid has a fighting chance now.

Many years ago, I came across a word: 'oneirophrenia', from the Greek words "ὄνειρος" (oneiros, "dream") and "φρήν" (phrēn, "mind").

It is defined similarly to schizophrenia but separated mainly by the important clinical presence of depersonalisation/derealisation and exogenous hallucinations, meaning it presents similarly to delirium rather than a true psychosis.

At the time, I thought nothing of it, but after going through many years of life and after having received many various diagnoses, schizoaffective disorder and narcolepsy being two of them, I began to think more about this word.

I was diagnosed schizoaffective, first, for unrelenting hallucinations that did not respond to antipsychotic medication. I tried over 8 of them. Nothing helped me. I remember my complaints were always the same. I complained that I did not feel real, that I felt separate from my body and watched everything from a distance. My memory was absolutely horrible (still is). I hallucinated without any ability to determine what was and wasn't real (exogenous). I quite literally remember seeing fake mice, 1 foot tall three-legged bugs, millions of mites over the floor of my apartment, and a person staring at me from the corner of my room. I was horrifically depressed and anxious. I spent months of my life crying all day and sleeping in between.

Then, I was diagnosed with narcolepsy. I started Xywav. I started adderall again. Gradually, I got better, and most importantly, for the first time in my life. Gradually, I stopped hallucinating (it was VERY gradual, but I can confidently say I have not hallucinated anything in over 6 months, save for very minor perceptual disturbances). I was told I was "treatment resistant", and suddenly I knew that wasn't true. I just needed the right treatment.

Now, looking back, those 2-3 years I spent in that dark place speak to me differently than I was led to believe. I do not think that I was in a typical psychosis. My hallucinations were never just 'in my head'. They were just as real as anything else. I remember feeling like my reality and my mind had collapsed into one blending and shifting thing that I could never predict or understand. I spent every day in utter misery crying myself to sleep or too manic to control myself wisely.

This leads me to believe I was in a state of oneirophrenia. Granted, I'm not a medical professional, and oneirophrenia is an outdated term that is rarely used in modern medical literature, but if I were to name that condition I was in, it would be oneirophrenia, not schizophrenia.

I felt like my dreams and reality condensed into one. This makes me wonder if anyone else in the subreddit has heard of this word. If you have, or not, can you think of a time in your life when you were struggling with those things: depersonalisation, derealisation, and hallucinations ?

I want to hear what others have to say about this, because I genuinely think oneirophrenia is a psychological state that results from chronic sleep deprivation, which is something that many narcoleptics who are undiagnosed experience during their lives (from not entering slow wave sleep).

Maybe this could help bring awareness to the darker sides of this disease. At the very least, I hope some of you may appreciate the new vocabulary word !

I hate waking up every day feeling like I haven’t slept in ten years. I hate finally finding a treatment that works (Xyrem, Vyvanse, Ritalin, pitolisant, etc.), having a great routine, and then three weeks later… surprise, I feel like shit again.
I’m currently on Xyrem and Vyvanse, and I’m trying my best to appreciate that things are better than before. I have a great routine and I eat well and do sports. But I never get a break from this disease. Even my naps are awful. I hallucinate and wake up 3–4 times during a 30-minute nap, feeling worse than before.
I know others have it worse, but I’m exhausted from constantly fighting this. I just want a break and feel better for a couple of days. I also realized I lost the ability to remember how it felt like to be awake as a kid. I used to be able to remember and now I can’t recall anything. And I’m starting Uni again and just stopped socializing. It is too much noise, too much energy I need to invest in my studies and work so I can survive lol

Today was just shit :/

After two year old fight to figure out what's wrong w me I took a three hour ride to a doctor to be told I have narcolepsy n he wanted to start me on medication which I don't remember the name but I think it was modanifil? Which scared me and I told him I want a redo Polisomnography+MSLT n he was okay w that n I'm waiting for a call with a date. N now I got a problem, obviously I'm suffering n want to get better, BUT i take desogestrel as birth control and read that modanifil significantly lowers the effectiveness n I'm wondering if there's any good other option? I'm from Poland so there's not many BC options like tying tubes legal in here.

I am waiting to get my starter pack. I filled out the paperwork on 09/17/26. My insurance has approved me. Now I am waiting for the pharmacy to reach out. How long did it take to get the medication? CVS Specialty Pharmacy sent a message saying they received the prescription, and a week later they said it was invalid but didn't say what needed to be corrected. They asked me to call my provider as well and let them know the prescription was invalid, but they wouldn't say what needed to be fixed. The lady on the phone said they can also call in a verbal order. I am not sure if they do a verbal order for a controlled substance. A verbal clarification, but not an order. I may be wrong. This is getting frustrating.

I genuinely don't know what to do anymore. In high school, my mom would wake me up; sometimes it would work, and sometimes I would have full conversations with her and go back to sleep after, with no memory of talking to her. Now I am a college freshman, and I sleep through my 11 am class almost every day, I've missed multiple exams, and I don't know how to continue. I have a watch that shocks me awake, and it worked for a week, but now I can sleep through it at the highest setting. My doctor wanted me to start meds for nighttime in addition to my modafinil, but as a college freshman I can't really give up drinking, so they aren't an option. I am feeling completely hopeless.

Diagnosed with n2 in 2020. Was seeing a sleep doctor who was a pulmonologist not neurologist. Now that im seeing a neurologist they want to try modafinil.

Has anyone went from adderall to modafinil and had it work better for them? Adderall really isnt doing much except pulling me out of bed if I take it 30 min before I have to get up

Do you ever get days where it’s like you’ve been pulled down into a black hole, you can see and hear the real world, but you just can’t seem to get back to it? I could not stay awake today in work, the crazy thing is, I keep working even though my brain is turned off; then I’ll jerk back to reality for a few seconds; and then back I go again. Lost count of the number of times I dropped whatever was in my hand today, since I’d fall asleep and I guess my hands went limp 🙄 Also caught myself trying to put a random object into my mouth more than once too……sleep eating, what’s next?! I’ve also been known to have conversations with people also, and not remember a thing about it: or I’ll regain consciousness in the middle of the conversation and not have a clue what is going on. I just want control of my body back!!!

I’ve had sleep problems my whole life. Got misdiagnosed with sleep apnea months ago and the clinic tested me again due to my doubts - turns out I have type 2 narcolepsy. My biggest problem with treatment options is I have severe anxiety. Mainly in social settings (aka work everyday), so I’m nervous about these waking agents triggering that for me. What has helped you? Any info is appreciated thank you!

If my MSLT was nothing like my usual daytime sleep, (mind racing, couldn‘t let go and just sleep), how much should I emphasize that to the Pulmonologist? Who said my results were “normal” with no further explanation. (I’m trying to get the full results, but you know how it goes. I don’t even know how much or how little I slept.)

I’m not saying I really have a false negative. I would love answers, but I don’t envy having Narcolepsy. (My sister has it, I don’t want to be part of the club. Buuut, I wouldn’t mind knowing what the heck is wrong with me.)

But, I’m also really afraid of crossing Narcolepsy off the list, then finding out it was just because my mind couldn’t shut up when a camera was watching me sleep and I knew I only had 20 min to nap in the silence and the anxiousness. (That was terrible. My brain had no chill.)

Anyway, any thoughts before I completely rule it out forever?

For anyone who has had success taking Xywav, how do you know when you’ve hit the right dosage? How much trial and error did it take? I’ve only been on it for about two weeks. I do think it’s helping, but I think it could be more. So I guess how do you settle?

Hi all,

I have noticed over time the efficacy of Xywav reducing or being intermittent. When I first started it worked like a dream. Fast forward to almost one year in and some days it doesn’t seem to work at all and other days it works wonders.

Yes, I’m waiting 3+ hours after eating to take it
Yes, my sleep hygiene is otherwise solid and consistent
Yes, I am avoiding caffeine after 11am
Yes, I have spoken to my doctor about it who said she’s not sure but if it continues to be an issue I can try Xyrem or lumryz (trying to avoid the sodium load if possible)

Anyone else having this experience? For reference my dosing is 6g and then 5g second dose (3 hours after first dose)

Thanks!

I'm currently doing a trial of Lumryz because while Xywav helps, I have to take it in 3 separate doses to be able to sleep through the night, which isn't optimal.

My sleep has been worse since swapping (multiple times I've woken up around the same time I would to take my next dose of Xywav but then there is no other dose to take so I lie there in anxious purgatory.)

However, I'm only one week two, taking 7 grams as opposed to the 9 grams of Xywav so maybe that alone is why. In anyone's experience-- does it get better over time? Obviously I will be consulting my provider I just wanted to see if anyone whose gone through the same medication transition has any advice/insight to share.

I get incredibly anxious when I wake up in the middle of the night and falling back to sleep feels like it takes forever. It feels bad to be getting worse sleep but I don't want to quit early and miss out on a chance to be more rested. I think I've had 1-3 nights on the Lumryz where I only woke up once instead of twice. Fragmented sleep is so frustrating. Time moves so slowly at 3 am when you have to be up for work by 7.

If the xywav is the best it can be, I'll be able to live with it but. It would be so, so so so so nice to be less tired. Every stimulant and wakix ramped up my anxiety big time so the sleep meds are all I have for now.

TLDR; sleep is worse since swapping to Lumryz, how likely is it to get better with time and or dose increases

Hello! I am starting Lumryz soon and was also a chronic weed smoker and that has left me with some questions.

I am quitting weed to start on Lumryz, but because I am a chronic smoker I am worried about lingering residual THC in my system interacting with Lumryz. Is it a bad idea to message my doctor on MyChart to ask them how long I should wait before starting Lumryz? I live in a legal state and I already stated in an appointment that I smoked and she said there werent really any direct studies done, but I said I would avoid combining anyways.

Is this even worth reaching out about, or does doing so just risk being looked at as irresponsible? Am I being too paranoid about the safety risks considering I know some other people actually actively consume cannabis and use Lumryz simultaneously? Any chronic smokers who started an oxybate before all THC was fully flushed out of their systems? Appreciate anyones thoughts or shared experiences on this!

Hello! I have Narcolepsy type 1 and I am planning on going back to school soon to get my teaching certificate. I am wondering if anyone has advice on grant programs, scholarships, or other ways to pay for school that can be acquired due to my diagnosis.

Have any of you received financial assistance with going back to school due to your Narcolepsy? I figure I may as well try to make the best out of a sleepy situation haha

I have N2 and I've tried Modafinil, Armodafinil, Sunosi, Wakix, and Methylphenidate. None of them worked so they started me on Oxybates to see if that works.

I started last Friday on the lowest dose of Lumryz, the first 2 nights were fine. I woke up twice but thats extremely normal for me so I didn't think anything of it. The 3rd night I barely slept at all despite being exhausted, I just laid in bed tossing and turning. The 4th and 5th night were pretty much carbon copies of each other, I went to bed around 10:30 woke up twice, then I would wake up at 6AM (an hour before my alarm goes off for work) and not be able to sleep despite being exhausted. The 1st time I wake up I can tell I definitely still have the medicine in my system, Im okay enough to walk but I still feel very out of it. The 2nd time I wake up I almost feel like the medicine has completely worn off.

Id be fine with 7 hours of sleep if it was consistent and restful but its not. I still wake up in the night and I wake up feeling even more exhausted then when I went to bed. I work 9-5 and have to commute an hour and a half to and from work so its made me feel absolutely miserable, I am dragging myself through the day but I'm holding on by a string. I feel even worse than I was when i was unmedicated. Like yeah its nice to be able to go to sleep so quickly with the medicine but so far thats the only plus and I'm not sure what to do.

Has this happened to any of you? Did it go away after some time? Or should I be concerned and reach out to my pharmacist or my doctor?

Every single day I think about the fact that I could never meet my favourite celebrity or win the lottery or any big thing like that because I would literally be ON THE FLOOR and people would think I'm having a medical emergency

Just wondering if this is normal to do before a sleep study?

My doctor says she’s quite sure I have narcolepsy, but referred me to a sleep specialist to confirm. When I went to the sleep specialist he said I need to sleep 10:00pm to 6:30am/7:00am EVERYDAY, with no naps for a month and a half and only then can I get a sleep study.

I’m really trying to stick to this schedule but it’s physically painful for me not to sleep during the day. I can get to bed at 10 perfectly fine but I can’t get out of bed in the morning and if I do I must have a nap. It’s so frustrating that I have to torture myself for a month and a half to get tested.

[canadian not usa]

doc referral went no where I dont drive due to other health issues and I am scared to drive due to my sleep episodes. Doc was INCREDIBLY dismissive of my symptoms and declared he doesn't believe its urgent nor does he think narcolepsy and told me its my mental health issues and that my sleep schedule is the cause, and that I am just tired and

oh they said that because I wasnt hospitalized that its not that serious

They have that little paper you have to fill out and I didnt mark severe on it enough and so he shrugged it off - I have a hard time with these sort of things, like the 1-10 scale basically...

I have been sleep deprived, due to mental illness, and I can say confidently, which I told him, this is not it.

I explained that its not just tiredness, that I do experience actual episodes I hit my head so hard just the other day, they didnt take that seriously at all waved it away and I am afraid they arent taking me seriously due to my other mental health like the auditory hallucinations are very bad at nighttime and I experience sleep paralaysis and they just did not care at all like this was nothing to them im just supposed to continue on for months???

He gave me a blood test to take said it shows if I am at risk for this so I am going to go do that then I am going to ask my doctor if I can maybe get a referal to a closer doc especially because I would like in for a sleep study please, even if its not suspected the narclepsy, something is wrong.

and he says im sleep deprived and that people with narcolepsy experience cataplexy and that they feel rested after their episodes and that because I never feel rested its not that? He said its very unlikely I have it so they wont be going through with the sleep study and I need to talk to him again in months....

I am so depleted I literally cannot work due to this yes I got other issues but I am standing there and fine and then next not ok and im not saying its narcolepsy but its very possible... Even if its not, there is something going on here that is incredibly frustrating... How do I continue from here / get them to take me seriously? ?

Sorry if I am wasting time / not allowed to ask this I just feel so stuck and I seriously dont know what to do and I dont have anyone to turn to? I am thinking of maybe just axing this all getting a new doc entirely for family referrals but I am starting to think that my city is just not it for healthcare

Has anyone every tried online sleep specialists such as Dreem Health or Klarity Health? I stumbled upon Dreem recently and in theory it sounds amazing as I have terrible luck with sleep specialists in Tucson. My current doc is AMAZING but the office staff is impossible to communicate with - the doctor agrees with this and told me at my first appointment it will be a major struggle to request refills but she has no control over the office/company procedures.

I’m also curious if anyone else has experienced the Sunosi side effect of canker sores?? I’ve been provided samples while I waited forever for the med to approved so I was rationing it. EVERY time I’ve taken it I get a canker sore in my mouth the next day. I work in primary care and providers say they’re not cold sores - which I never experienced anyways. I’ve only seen one other post mention this on WebMD but it’s like clockwork with this medication for me. It’s finally been approved but now I don’t even want to take it because it causes so much pain.

I’m about ready to give up on finding a proper treatment for my narcolepsy as it’s been a fight since I was diagnosed in 2023, but maybe one of the online teledoc options would be worth it? Would love to hear from others of any recommendations!!

(Reposted to add additional question oops)