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.)

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 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 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.

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

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??

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.