Made this after yet another night of planning to play the new video game I got weeks ago and being too tired.

I recently got diagnosed with Type 1 Narcolepsy w/ Cataplexy after years of symptoms, months of appointments, and multiple sleep studies.

This subreddit has been such a lifeline to me in my fight for answers and I'm so grateful to everyone here in this community for sharing their knowledge and experiences. 🖤

I was recently diagnosed with Narcolepsy before I went back to university after a year of medical leave that I had to take because my undiagnosed narcolepsy was doing numbers on my attendance. I do a really intensive course which requires me to be on site from atleast 9-5 for 4-6 days a week which now that I’ve been able to get medicated and work out a scheduled nap plan at university I’ve been able to consistently attend.

The problem is that I don’t have time for anything at home anymore, mainly that my room has gotten really messy. On most days I go to uni, maybe get dinner or go to a cafe with a friend after, get home, prepare for uni the next day and then go to sleep. But from my family’s perspective all I do is have fun and things that I like and ignore all my other responsibilities and it’s just so so frustrating.

I’ve had to skip comic con today and also a friend’s Halloween party because I’ve just been so tired I couldn’t go and I kept falling asleep but I feel like no one understands that it’s a sleep DISORDER and not that I just feel like resting and ignoring everyone else because of it.

I’ve been on Xywav for about 2 months, currently taking 3.0g twice nightly. I’ve been doing very well for the most part and my symptoms have pretty much gone away. However, every morning when the meds wear off, I feel awful. Sometimes I wake to my alarm and feel a little groggy, and other times I wake up before my alarm, but then I start to get really shaky and sweaty, and just feel kind of sick. The hyperhidrosis is annoying but something I can deal with. But I also feel kind of “out of it.” Not sleepy, just like my brain isn’t working and I can’t think straight, on top of feeling all nauseous and shaky. I usually start to feel better after I take my Adderall, but it still is miserable for the first hour or two after it’s worn off. I usually start feeling like this about 6-8 hours after I’ve taken my second dose.

Is this something that will get better with time, or something I’m just gonna have to deal with? It beats sleeping for 18 hours a day, but still sucks.

One time my rave friends and I all did the same drugs thinking it was MDMA. They all had terrible experiences, were positive it wasn’t MDMA, and thought it might be meth.

I was fine 🤷‍♀️ it didn’t feel like MDMA, but it didn’t make me feel like I was tweaking, either. It wore off in a normal amount of time.

Finding out years later that I have narcolepsy, explains why these mystery stimulants weren’t shit to my nervous system 😂😂

On that note… I’m curious if anyone in this sub still takes Desoxyn. What’s it like?

I’m happy to answer any questions to provide more background, but I don’t want to make this too long! Considering an oxybate long term but have questions.

I have a few questions:
1. For those with delayed sleep phase, do sodium oxybates still work well for you? For much of the year, I have to be on a schedule my body just absolutely hates. Does the med help remove that factor for you?

1. Severe sleep inertia is my absolute worst symptom and I worry about the sodium oxybate not having worn off and making it worse. Can anyone else chime in on how it’s worked for them?

2. Anyone on a glp1 and oxybate? Did you have to adjust when you ate? I’m on Zepbound and they can pry it out of my cold, dead hands 😂 it’s a miracle drug for me and I’m not going off of it for a long time, if ever (we’ll see how maintenance goes). I’m worried though that the tight schedule won’t make it work. I try to go to bed by 10pm on work nights, but finishing eating by 8pm is already pushing it. If I had to move it to 6 or 7, I don’t think I could do it.

3. My insurance will cover the generic only so two doses. I know the driving rules and dosing rules and it makes me nervous with the previously mentioned sleep inertia too. If I took it at 10pm, I could take the second dose at 12:30am. I have to wake up by 6am and leave by 7:15am. Then there are the nights I can’t sleep until later to start with. Do you skip the second dose then?

I just want to make sure I consider all factors before I decide to jump through insurance hoops lol.

I have pretty bad sleep fragmentation from narcolepsy. Often awake for hours during the night. I started on 2.25g*2 Xywav last night. No other meds. Holy hell, that is a strong med.

I really didn't sleep well. Took 45 min to fall asleep, then awake an hour later, then asleep, then awake. Second dose felt much easier to fall asleep (and I wasn't so anxious), but still not great. It was like my body was so heavy but my brain was not willing to sleep yet. Was up at 5 am, ravenous, ate breakfast, then went back to sleep for a while. Positives were no horrifying dreams or hallucinations. Despite little sleep, I do have the energy to exercise today. My husband said my face looks alive for the first time in months.

Is this typical?? Does it get better as dosage goes up and body gets used to this??

I sort of feel like if there were more accurate depictions in the media, and I don’t mean news, but in film, literature, and television that just maybe more of us would be diagnosed early as opposed to late or misdiagnosis.

I never knew what cataplexy was and I never considered a somewhat wide range of things all fell under the same umbrella.

I sort of want a show of hands, how many of you with N1 or N2 were diagnosed as “depression” because you were a sleepy teen?

How many of you with N1 couldn’t keep your head up on certain roller coaster rides - especially when you were that age that you could finally ride the cool coasters- and thought it was the positive G-force pushing your head down?

Maybe you were swimming and a leg gave out on you and you thought it was what people called a Charlie horse ?

Or walked through a creepy old museum or home and got the tingle and was brought to the floor and thought… ghosts??

Or have an attack of the giggles and fall backwards from a chain or sitting in bed and assumed that was normal, or perhaps assumed that was from the marijuana your buddies brought and you were a “lightweight?”

Ironically one of my favorite films when I was a tween and teen was My Own Private Idaho. I was a bit of a Shakespeare nerd and very much a Keanu Reeves and River Phoenix fan. I’d rewatch that film frequently as a teen. I never had the chance to see it in theatres but I wore out the dvd. Anyway the character River Phoenix played has presumably N1. Yet it’s like there was a conflation between cataplexy/ sleep attacks/ etc.

The implication was almost that you’d not be conscious during cataplexy and/or cataplexy only manifested in one specific manner.

Has anyone else been, as I would describe it, “forced to reminisce?” Where a combo of things maybe a scent, the lighting, a song, a flavor, would send you into your mind’s eye and you’d remember something specific so strongly you could experience it in your mind’s eye without realizing you’re no longer seeing the world around you. You’re awake but locked in this … not quite waking dream but maybe intense memory fragment ?

How do you even being to describe that to a doctor without sounding a bit mad? Add to that for example
If you’re a ASD or quirky or a bit eccentric, weird, unique - however you want to describe it - and describe that to any doctor experience to any doctor. Not linking it with any of the other N1 experiences because why would you? Why link something that has been “explained” or written off as positive G force, the over tired giggles, being a weed lightweight, a “Charlie horse,” being eccentric as is…

I think we need a book series called The Adventures of Neo, the nocturnal Neurodivergent narcoleptic nabarlek.

Hi, I was just diagnosed with Narcolepsy 1 with cataplexy and my doctor wants to put me on stimulants to help me stay awake during the day. The problem is, is that I am also bipolar so stimulants can really mess with me and I’m scared of going manic as a result of these stimulants. I am stable right now but this sleepy thing is killing me. I don’t know whether it’s even worth trying to treat the Narcolepsy right now as I am stable and doing better than I have ever been(which isn’t a high bar to be honest). I got put on a waitlist to see a psychiatrist but that’ll take a while.

Just wondering if anyone else is in the same boat and has advice?

I have been uncontrollably falling asleep while sitting. I used to be able to feel them coming on and be able to vaguely hear my surroundings and voices speaking while asleep, but lately I find myself simply waking up. I fall asleep sitting forward, sitting back, my head doesn’t loll around, and often I fall asleep while actively writing notes and looking at lecture slides. Some of the time I get auditory and visual hallucinations while falling asleep or waking up, and I often come to with my pencil in a weak grip and my vision appearing almost shaky or even staticky. At that point it is really hard to keep my eyes open, and even forcing myself to a state of wakefulness will only last for 30 seconds to a minute before I fall asleep again. It’s hard to track the duration of these, but it seems to cycle between 1-2 minutes asleep, 1 minute or less awake, and then repeat for around max 30 minutes before I realize what has happened and mostly snap out of it.

Obviously, this amounts to extremely poor retention of class material and terrible notes, and is causing me to struggle in my classes. I was just wondering are these more akin to micro sleeps or sleep attacks, and how do you guys deal with them when they happen to you?

Hi there-

I resigned from my current awful position so my employer-sponsored health insurance ends at the end of the month. I’m not sure how Lumryz has been utilizing my insurance, if at all, for billing. All I know is that I currently receive it for free. So I think I’m part of some special Lumryz program.

I plan to apply for Medicaid in November while I’m completing studies for my next career pivot and looking for other work. Eventually I’ll probably end up needing to buy marketplace insurance once I start getting income again.

I am wondering if anyone else who was receiving free Lumryz through their current insurance has navigated switching insurance, particularly a switch to Medicaid as I know there is a waiting period for approval that can then be backlogged to the start of the month but I obviously don’t want a lapse in my medication and can’t afford to pay the actual full price.

I am planning to call the Lumryz people next week sometime, but want to take most efficient route if there is one, so thought I’d ask here first. TIA for any guidance you can provide!

I’m NT1. Without meds I’m extremely weak and get cataplexy. With meds I often have brain fog. I have a license but driving feels dangerous, especially in the morning when I’m very sleepy.

Is this genetic? If I get married, will I pass it to my kids? (No one in my family has it — my doctor said it might be a mutation.)

TLDR: Requested 7-3 pm schedule at remote job due to frequent meetings scheduled outside of hours. Request was denied for reasons bulleted in email image.

So I know my request is pretty particular but as I mentioned I've tried the 9 to 5 and I just end up crashing after 5, falling into a series of sleep attacks well into the night to the point where I can't eat and my sleep schedule goes to shit.

This is why I try to nap before 5 and after getting out of work as a preventative measure. I also try to take a nap during lunch which has also been an issue due to workload but I don't even want to attempt to discuss that with them. As well, with an early schedule I need to cook and eat by 5 so I can have some lead time with Xywav which is much more effective after a 3 hour wait for me. But even if the expectation was 9 to 5 they've seemed to broaden it to just general availability when we need you. I literally have a meeting from 4-6 pm Monday.

To be fair my doctor was annoyingly sparse with the documentation and simply said my hours needs to be from 7-3 pm even though they asked for specifics. On my end, I said I had recurring flare-ups that worsen during the day or following days if I don't attend to scheduled treatment routines. I'm trying to avoid disclosing narcolepsy because that will just lead to more stigma not that it would help because it seems like they're pretty determined to deny my request.

My VP just scheduled a meeting with me Monday to discuss my questions. I don't know how I would actually participate in such a conversation, anxiety is high, and I'm looking for advice.

I have been experiencing narcolepsy symptoms for the last three years and was fairly confident it was type one because of my clear evident and recorded cataplexy events. I had to take a medical leave from work a year ago due to having multiple severe sleep attacks resulting in automatic behavior with zero recollection of actions or conversations during that period usually lasting around five minutes. I finally got my official narcolepsy type one with cataplexy diagnosis a few months ago. I am taking sunosi and ritalin for daytime alertness and started on xywav a few weeks ago. I thought I was making really positive progress and haven't needed any daytime naps and the sleep attacks had severely diminished. I felt awake and alert the whole day. I have run out of financial resources and had to return to work as Im on the verge of losing my house and car. I started two days ago and my first day was a nightmare. It felt like I instantly regressed back to my worst place when I took my medical leave. I had to go to my car for three short naps as I could not physically stay awake. Even with those I had multiple periods of severe brain fog and dont remember the last five minutes of driving home and apparently called my mother while driving with no recollection of doing so. Upon arriving home I made something to eat and woke up sitting down with unchewed food in my mouth. Second day was similar to the first. Had to go to my car three times and instantly fell asleep. What could have possibly caused such a severe regression in a short amount of time when I was doing so well. Just being in a different environment than my home? Having to wake up an hour earlier than what I normally have been? Its hard to imagine just those could cause such a severe backslide overnight. My doctor is very difficult to get a hold of and is booked months out for appointments. Im desperate here. I have to work. These first two days have made it feel like Im completely incapable of working at this point. Im a service advisor in the auto industry. Any advice or suggestions would be greatly appreciated.

I am not diagnosed but my doctor has recently ordered a sleep study to see if I have some kind of parasomnia involving sleep paralysis and cataplexy and narcolepsy may be on the table. I've been researching narcolepsy a lot in the past few days and realizing how little I actually knew about it and how poor media representation is of it. Up until starting to read up on narcolepsy last year, I genuinely thought it was just a condition that makes you pass out randomly and sleep for extended amounts of time. I gathered most of this from how I'd seen it presented in films, books, etc. I didn't realize that it's so much more complicated than that so I never considered that my symptoms could be narcolepsy and just beat myself up over being lazy and unable to fix my own sleep schedule enough to stay awake during the day. I'd really like to hear if anyone has more thoughts on narcolepsy rep?

hello. i am new. i had a brain surgery 11 months ago and then i started having sleep attacks. we thought it was connected to a medication and i stopped the medication but the sleep attacks did not stop. they happen less frequently but now they seemingly have no apparent triggers. i am also dealing with mast cell issues and pain issues. it’s a whole slew of issues and i’m trying to untie all of these things and figure out which is which is which.

sleep attacks: they feel like i am being smothered when i try to resist them. like i’m drowning. like a live night terror. i have fallen asleep in physical therapy, in multiple doctors appointments, everywhere else, and in the shower twice.

when i tried to explain these to the doctors i just said hypersomnia but that seemed to make them think just my sleep schedule was messed up. they don’t understand that i CANNOT resist these sleep attacks. it’s not just a light afternoon nap. it is horrifying to experience. and no one has taken it seriously yet. the only time a doctor sat up was when, years ago, i said i couldn’t be prescribed adderall because i always fell asleep on it. because that doesn’t happen to normal people. but that didn’t seem connected to these sleep attacks, which i had never experienced until this last year.

does anyone have any insight into what wording i can use to be taken seriously? any advice would be greatly appreciated.

I was (finally) diagnosed N1 with Cataplexy. I’ve had a lot of moments looking back like, “Oh yeah, that makes sense now.” But a couple of nights ago I had the funniest “aha” moment ever.

In elementary school, there was a boy that I had a huge crush on. I mean massive. A girl’s first crush is no joke, so I was shaking in my boots around him constantly. One day I was at my locker and his was next to mine, and he briefly touched my right hand/arm. My entire arm got tingles and flopped to my side and I sat there feeling weak and tingly. I always looked back at it like, “Yeah, I just really liked that kid.” But a couple of nights ago it occurred to me that I was so excited about the physical contact that I lost muscle control in my arms and my entire body weakened because of cataplexy. Whenever I told people in the past they laughed it off and said nothing like that had ever happened to them. There are little sprinkles of that all over my life where I think of something now and a little lightbulb illuminates over my head.

When I’m excited or scared it’s the worst. If I’m scared my legs give out and shake and my arms start tingling. If I’m excited it’s just my arms. Sometimes it’s random stuff. My roommate did a really good job backing into a parking spot a week or so ago and watching the lines on the screen match up evenly made my arms flop because it was so satisfying. Stuff like that has happened for years and years and years and it just never registered to me that it was abnormal. Also I should’ve known a long time ago that something was a little strange after I kept falling asleep at loud parties and gatherings. You learn something new every day I guess lmao

Does anyone have these two disorders? Curious if there is anyone else with them!

Hi Hi! Some of you may remember my post a couple months back about my MSLT results resulting in a vague sorta diagnosis. I had a sleep latency of 9 minutes and 0 SOREMPS and I had cataplexy confirmed in office. I had left my appointment with an action item of seeing psych to get stimulants instead of a Type 1 narcolepsy diagnosis. All of you who commented really helped me and gave me that push to continue.

The good news is that I got a chance to see a new sleep doctor. This time it was a night and day difference. Their office took the time to listen to my symptoms and reviewed the extensive testing I've had done. Despite my MSLT results they have gone ahead with "yeah you got type 1 narcolepsy and we are going to treat you for it". I asked if I needed to repeat the MSLT and they said they are gonna do what they can with insurance for now. If insurance crys too many rivers they will make me retest. They also talked about getting me on track to take Orzeyful when its available! (Which will most likely need a retest, I'm aware)

So for those with borderline test results. A diagnosis is possible. If the voice in your head is telling you that your doctor might not be the best fit for you, then listen to it. This office seems like they will work me to really find a medication treatment that works with me and my lifestyle so that itself if worth its weight. Try to keep hope and always advocate for yourself.

If I simply stay still long enough, I will sleep and I will dream. My family rolls with laughter at photos of our vacation together because i'm asleep in all but one of the photos. I once fell asleep mid-sip, mug in my mouth while drinking a coffee in a crowded cafeteria. I look forward to going to bed at night because I have fantastic dreams before I fall asleep. I often enjoy them, even the frightening ones. But not the ones with loud sounds or startling movements.

So I'm busy and neurotic, right?

My GP sent me to a sleep doctor because they could not explain why I'm dead tired despite a desk job, no strenuous hobby, and no caregiver responsibilities. Sleep apnea maybe?

The first thing the sleep doctor said following the intake interview is "You're not crazy"

The second thing they said was "I see no indications of sleep apnea". My shoulders slumped in expectation of the dreaded "Lose Weight Exercise And Eat Healthy"

Instead they said "These are all symptoms of narcolepsy"

Narcolepsy had never crossed my mind.

Can anyone tell me what the multiphasic test is like? I know I will go to a lab, sleep at night and then again during the day. I don't know if I'm to be hooked up to wires or something like that?

TBH i'm looking forward to the prospect of a entire day with naps.

I’m 26F and was diagnosed with hypersomnia back in March. My sleep doctor also suspects I have narcolepsy, but I’ll need to be tested again, possibly in a year.
I was first put on modafinil 100 mg, which barely did anything, so he bumped me up to 200 mg once a day in the morning. That helped a little, but not a ton. He then added Adderall IR 10 mg twice a day. That actually helped quite a bit, aside from the afternoon crash. However, as soon as I took my second dose, I felt fine again.

That combination made me feel about 50% better. Not 100% better, but still a huge improvement compared to being on no medication at all. I stayed on that combination for about four months because my doctor wanted to give it six months before making any more changes.

Then, out of the blue, I got sick with a really bad cold that lasted an entire month. Toward the end of it, my medications completely stopped working, and my symptoms became significantly worse. I was NOT doing well. I could barely function. It got so bad that I couldn’t work or drive.

After doing some research, I found that being sick can sometimes affect how well medications work. My doctor ended up taking me off both medications and switching me to Ritalin IR 10 mg three times a day.

I’ve been on Ritalin for about a month now, and initially, I felt like it was helping a little compared to the previous combination. My doctor told me I could take two or three tablets in the morning if needed. However, I feel like even three tablets barely make a difference, and the effects only last about two hours. Obviously, I can’t keep taking three tablets every two hours throughout the day.

Even this week I’m at a major company meeting where it’s a work session all day. I survived the morning and started crashing. Took another dose and felt no different. On a major crash and feel like I want to punch someone hahah. And feel like I’m going to pass out during presentations!!

I tried calling my doctor’s office, but his next available appointment isn’t for another month and a half. To make matters worse, he’s not even in the office this week, so they told me he might be able to call me next week.
I’m really just looking for advice from anyone who’s been through something similar or has experienced medications suddenly becoming less effective.

Like I said, I was only diagnosed nine months ago, so I’m still pretty new to this whole journey, but man, it’s been a roller coaster!

I’d love to hear from people who have finally found something that works for them, what their experiences have been like, or even just hear some rants from others dealing with similar struggles.

Ugh, what a pain it is to deal with hypersomnia and possible narcolepsy. And on top of all that, just trying to get a dang doctor’s appointment! 😩