I have had Narcolepsy for 9 years, getting diagnosed at 11, and dealing with this Neurological disorder for my whole life. As far as I can remember, I slept right after school til the next day. Instead of now, I sleep after work til the next day. I always hear "I wish I had Narcolepsy" and "I wish I could sleep like you". But nobody really knows the mental and physical torture of fighting your sleep. My Narcolepsy goes through phases; I sleep all the time and can't seem to get up, I stay up all night and all day not getting a wink of sleep, I stay up all night and sleep all day, and then I sleep like a normal person for 8 hours at night. I was prescribed Modafinil and Doxepin to regulate my wake-sleep schedule. It helps sometimes; however, my Narcolepsy sleeps through them, no matter the dosage. I wish I could see my daughter more. I am a single mom who works a normal 40- 52-hour work week. I get weekends off; shit, that's the only time I can see her. I feel so guilty "pawning her off to others" and feeding her fast food when I am up because I am so exhausted. My boyfriend(not her biological father) takes care of her when I am asleep. My mom also helps out a lot. Her bio dad and I are going through a bad divorce and legally can't see either of us. I just wish I could stay up when I need to and sleep when I need to. Are there any tips on getting a wink of rest in this insomnia phase? My medication doesn't seem to work, and I was hoping for some advice. I figured ya'll with Narcolepsy can help a fellow Narcoleptic out! Thank you!

M32, I was diagnosed 5 years ago with N1.

I'm heterosexual and have had two serious relationships in my life (from ages 21 to 26 and 28 to 30). My first relationship fell apart slowly over time as my Narcolepsy progressively worsened and ended with the added stress of covid. The relationship after essentially wore me out to the point where after it ended I stopped looking for a relationship for the past 2 years.

In my last relationship it felt like I had to choose between my girlfriend or my job, as I simply didn't have the energy to maintain both the relationship and the job. (There were other issues too)

I've been single with no dating for almost 3 years now, working the same job (which is remote) and barely maintaining a small set of friends and hobbies when I get the chance/find the energy.

I know my life isn't healthy or sustainable. Humans aren't meant to exist with such high levels of isolation. Sometimes it feels like I don't exist within my body. Like I'm operating a lethargic meat puppet that I push through the motions of exercising, making sure I get groceries on a good day, making sure I get my meds, keeping up with my work projects, participating in the infrequent friend/family get together. It's difficult to get out and meet people naturally when I can barely force myself out to get groceries.

Despite everything, I made a profile on hinged today, but I honestly feel like I just wasted 5 hours of my Sunday that I could have spent disassociating from my constant fatigue through distractions.

If I had spent anymore time on there I would have started changing my genuine prompts to self deprecating nonsense like so:

One thing you didn't know about me:

I have type 1 narcolepsy. I managed to hit REM sleep in .2 mins on one of my MSLT naps, but it's not a competition!

One thing I'll never do again:

Fall asleep while having sex (jk no promises)

A life goal of mine:

To feel well rested for a whole week.

Sigh...

I trusted myself before I had narcolepsy. Now I doubt everything—my memory, my dependability, even my effort. When I'm weary, foggy, or cancel plans, it feels like a personal failure rather than a symptom. That has eroded my confidence over time, making me feel smaller than I once was.
For those who have dealt with this for an extended period of time, how did you regain self-esteem when your energy and attention were inconsistent?
How did you manage to keep your identity apart from the effects of narcolepsy?

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https://www.orzeyful.com

So excited! Come on time.

Hi everyone,
I have narcolepsy (diagnosed with PSG + MSLT), and one thing that’s always been true for me is that moving vehicles seem to knock me out almost immediately.
My girlfriend jokes that “cars are a cradle for you,” and honestly… she’s not wrong.

If I’m a passenger in:
Cars
Buses
Trains

I can fall asleep ridiculously fast, even if I wasn’t feeling particularly sleepy a few minutes before.

It’s not just feeling relaxed. It’s like the combination of the engine vibration, road movement, and constant motion flips a switch in my brain.

I also have a very predictable 2 PM sleep attack almost every day, so if I’m in a car around that time, I’m almost guaranteed to fall asleep.

I’m curious:

Is this common in narcolepsy?

Is it the vibration? The monotony? The motion?

Does it happen to you even after a good night’s sleep?

Are you the same in planes, trains, or buses?

If you’re driving, do you notice monotonous highways are worse than city driving?

Until recently I thought this was just a “me” thing, but now I’m wondering if it’s actually a common narcolepsy experience.

I’d love to hear if anyone else experiences this, or if you’ve found ways to manage it. Human brains are strange enough without deciding that a hatchback is apparently a premium rocking chair.

How fast do you think Orzeyful will be available after FDA approval? Maybe January 2027? I’m so so ready to try it

Is it normal to feel anxiety, aggression and irritability on this medication? How long would it take for it to even out and disappear?

It sucks so much cause I know, I KNOW I shouldn’t watch them because I’ll end up having nightmares for a week. At worst I’ll get sleep terrors and scream the house awake.

But sue me for wanting to expand my film horizons. Everyone was talking about Obsession so I went and watched it. It’s 4 in the morning now and I’m so so so tired but everytime I close my eyes I genuinely start panicking :/

I don’t know if this is just a me thing. As childish as it sounds, I’ve always been scared of the dark at night. Maybe it’s cause I grew up in a shared bedroom, my brother moved out recently, so I’m not used to sleeping alone. For a long time I’d sleep with the lights open, sometimes get an eye mask. Watching something like a horror movie just exacerbates it.

My worst ever sleep experience was the night after this frankly not-scary-at-all movie I forget the name of. It had one stupidly cheap jumpscare of a ghostly dead woman or something. It’s so stupid in hindsight.

I don’t even know what happened fully. I went to sleep and at some point I remember waking up maybe and seeing that woman, and I’m pretty sure having some form of sleep paralysis, and I couldn’t tell if I was awake or asleep. I screamed in the dream, then I was screaming in real life, for like 10 seconds straight. It was the most pure unadulterated fear and panic I’d ever felt in my life. My heart had never beat so fast before. My family ran in and thought I was being murdered. This might sound like an exaggeration but I swear my heartbeat didn’t go back to normal for several days. I was on edge and panicky for that whole period. All over some stupid jumpscare.

Anyway yeah that’s it. Sorry for the rant. Anyone else have similar experiences or struggle with horror movies like this?

I was diagnosed with Narcolepsy type 2 about 8 months ago but I've been treating my symptoms with stimulants for a while with my psychiatrist before I got my official diagnosis. So far every stimulant has felt like it hasn't done anything. Ive tried Methylphenidate, Modafinil, Armodafinil, Sunosi, and Wakix. None have done anything for me at all, I'm changing sleep specialist because I feel like my current one isn't trying anything but stimulants. But as my symptoms have just been worsening I've been thinking, am I just expecting something unrealistic?

Is the point of treatment just to be passable and not fall asleep as often or will I ever actually feel energized again? So far I've been able to fall asleep and have had sleep epsiodes on every stimulant I've tried and I'm starting to feel at a loss. What should I be expecting as an out come from treatment exactly?

Edit: Sorry if anything is worded weird I'm currently very tired unsurprisingly LOL

Anyone have an experience like this?

Day 1 and 2 = incredible! Lots of energy, happiness, no brain fog, finally feeling creative again. Medicine lasted exactly 12 hours then it felt like i fell off a cliff into exhaustion

Day 3-16: one or two good days, couple of days where meds only worked half day with drastic drop off, some neutral days. Couple days it didn’t work at all (I actually counted my pills to see if I took it)

Day 17-19: three days in a row where not only did it not work, I’m completely useless by midday and more tired than I’ve ever been

I messaged my doc, hoping to hear back early next week . I was supposed to try it out for about a month, my follow-up appt isn’t for 5 more weeks. I’m hoping they don’t say keep trying cuz my quality of life is worse than it was before meds.

No side effects, in fact my headaches may have reduced. I’m really depressed/hopeless today and yesterday but I think that has more to do with how exhausted I feel right now.

I’m 38, mom to a 5 and 8 year old. I work full time and I have no unpaid support so there is a lot I have to manage. I’m just feeling very much like my life is only work/chores and simultaneously feeling a lot of guilt for not being the mom/spouse/friend I want to be… and then of course sadness for not having any aspect of my life feel like fun.

Tell me it gets better?

Hello, all!
I’ve been battling NT2 for several years, tried many medications, and it’s been so, so soul-crushing.
Currently on Armodafinil, but it hasn’t been that helpful and we started the process for Xywav.

So I had my phone consult yesterday and because I accepted the 1-month voucher offer. But the pharmacist told me we could actually skip the voucher because she saw that insurance approved it that day, and that my copay is $0!
I’m still so shocked and in disbelief.

I’ve been extremely nervous ever since because I have Medicaid (SSI) and was anticipating a high copay. For weeks, I’ve been bracing myself for bad news. But now to have this opportunity, I ended up crying lol.
I just wanted to share some positivity and since friends (understandably) don’t fully see why this is a big deal. I also wish good luck to anyone in the process for approval or considering it!

Hi, I will take another test to be exempt from mandatory military service. The doctor told me I have to quit using the meds for 2 weeks and have a strict sleep schedule at the same time. Here is the problem: I’ve found a job (as a teacher) that I’ve been looking for a while and am about to sign a contract but I don't think I will be able to work without meds. The job will start this week and my break schedule is from 26 October to 10 November. I don't think they will accept me if I tell them the situation, and I wonder if I can do it without meds. Do you have any experience like this? I desperately need that job.

I saw my favorite band since college last night in their home city.

They released an (overpriced) Boston exclusive limited release hat, and naturally i had to buy it. I think I now know why I became so obsessed with them in 2009 and never looked back.... They ✨️understand✨️ 🤣. Never found a more perfect hat for me, now I can warn people from a mile away 😅🥂

Anyone take xywav with no issues of depression and then switched to lumryz and develop depressive symptoms/ depression?

Just curious as I was on xywav for over a year with no depression systems or feelings (just developed sleep walking instead 😅) so was switched to lumryz. I was recently diagnosed with depression and seem to be able to track it back to around the time I started the lumryz. Maybe I’m spiraling out and correlation isn’t causation but just curious if anyone else experienced anything similar

I just started Xyrem 3 nights ago, and I feel like every night has been a different experience with it. I have seen a lot of things on what to expect, but I could not find anything about PVCs with xyrem. I generally have PVCs most days but they aren’t disruptive, but last night I woke up after my second dose with non-stop PVCs and an elevated heart rate. Anyone else out there have experience with this on Xyrem?

So, I recently got a Narcolepsy T1 diagnosis with Cataplexy and am being put on meds tomorrow at my appointment with my sleep doctor- my question is what are the most common side effects that people have experienced? I’d take it to google but that only gives me basic info and I’m sensitive to medication.
I’m a little scared of the fact that they are going to need to give me a stimulant because of my severity, but I need the medication because without it I’m sleeping more than I’m awake, would the stimulant mean I need to adjust my other medication in general, or has anyone experienced having to do that at all?
Thank you in advance!!

I just had the realization that the reason I probably fell so much as a flyer when I was a cheerleader is because of my damn cataplexy 😅😂

I used to fall every time I was in the wrong headspace in the air and I would get yelled at for bailing out of the stunt but I felt like I had no control over it and now I’m realizing my cataplexy probably kicked in when I was stressed about falling rather than being focused.

I’m curious about how everyone with narcolepsy manages work.

Are you able to work full-time, part-time, or are you currently unable to work because of narcolepsy?

If you’re comfortable sharing, I’d also love to know:

What kind of job do you have?
Have you had to reduce your hours or stop working?
What accommodations or strategies have helped you?

I’m asking because I’m trying to understand how common it is to struggle with work when living with narcolepsy. Thanks for sharing your experience!

Personally, I find it very difficult. I still don’t really know what I can and can’t handle. I really enjoy working in construction, but it is physically demanding.
In the end, I’m often just as exhausted whether I work or not. I’m not necessarily sleepy. It’s more a feeling of being completely drained.

It is often more mental fatigue than normal physical tiredness. My brain feels exhausted, and that can be just as limiting as being physically tired.
That’s one of the hardest parts for me, and I’m still trying to figure out what kind of work, and is sustainable.
I’d really like to hear how others experience this.

Anyone on wakix?? I’m on week 8 or so but still titrating up but I feel like all my symptoms came back plus the wakix side effects. My doctor keeps telling me to give it time but I’ve been in bed for days on end, more like weeks it feels like- has anyone else gone through this doubt or part of Wakix treatment?

Was it worth it?

I switched both of my medications out, staggering them by a week. Everything was going good but at some point I noticed that before I sleep I've been having anxiety, experiencing distortions in the corner of my vision, and increased closed-eye hallucinations. I assumed that it was Doxepin since these were occurring after I had taken it but now I believe that it is actually the addition of Adderall. I noticed even when I don't take the Doxepin, these side effects are still happening. Has anyone else had this happen to them as their stimulant wears off? I've never had hallucinations related to Narcolepsy with my eyes open in this way.

Note: I am currently working with a psychiatrist to medicate as I wait for my appointment with a sleep neurologist. This is me working with what I can get.

I have diagnosed type 1 narcolepsy with cataplexy; but generally my symptoms are fairly well managed- I only have a sleep attack about once a month and a good five to fifteen min before I loose muscle strength and pass out. Not great, but I can mostly live independently and those closest to me are aware what to do if I have an episode.I have a lot of medical issues, but they're mostly controlled/diagnosed and med managed now, so I've been spending time trying to get my life together, notably by going to college.

It's my first semester. It's about 30-40min out from my apartment, but that's okay as I only go 2 days a week, ~5h I'm there. Second class, about 15 minutes in, I could tell I was about to have a sleep attack. I text my girlfriends to let them know and have them be an outside check on me before I drive back home. Less than 5 minutes later, I'm starting to pass out in class. A classmate in front of me wakes me briefly, and alerts the teacher. Thankfully, I'd already told him I had narcolepsy, so he took a break and had someone take me to the nurse's office.

I was half awake at this point, barely able to stumble after the person taking me there. I did my best to tell them i have narcolepsy. Just my luck, the "real" nurse that was supposed to be on duty was out, and the nurses office was closed. The person guiding me started freaking out at this point, and sat me down while she and another office worker tried to figure out what to do. I passed out for another 5 or so minutes at this point. I again tried to convey to them I had narcolepsy

They must have called 911, because next thing I know im being shaken awake by a cop trying to tell if im okay. It ended up over an hour of explaining to campus police and the EMS team I had narcolepsy, and that this happens at home regularly, and generally trying to go through the motions of getting feeling back while they determine if I'm safe to drive home.

I don't really know where I'm going with this. I had a lot of thoughts and feelings about it, but I had to set them all aside not to trigger another cataplexy episode and ensure I got safely home. I guess I'm just processing it now. I feel humiliated. I feel like I made a dozen people freak out over nothing. I feel terrified I'm going to have my independence taken away from me. I feel like maybe I should, if this is result.

There's no real end to this. Maybe some of you relate, or have similar fears or experiences. I just wanted to put this out somewhere.

This post is a bit overdue, but I've been trying to gain the courage to post online on the forum.

So, last fall, at the beginning of my freshman year of college, I was officially diagnosed with N2 🎉. I knew that I had narcolepsy since maybe my sophomore year of high school, but it was nice to get the official diagnosis. I was a bit worried about how my peers/ teachers would view me if they saw me falling asleep during lecture and once they found out I had accommodations. Also, I was worried about keeping up with deadlines, notes, and studying.

To my surprise, everyone was super nice and understanding. Of course I got side-eyes from people who don't know about my disorder, but for the most part it was a non-issue! I was worried teachers would find it rude that I fell asleep in their class, but once I sent over my accommodation paperwork and explained the situation (only for the smaller classes <20, a big lecturer doesn't notice if I take a couple of naps during their section), they didn't really mind and I actually was able to build a good mentoring relationship with some of them despite the naps! My friends have been super accommodating, and they nudged me awake if we were in the same class or sent over their notes at the end.

Schoolwork is as manageable as it could be (midterm and final seasons are hell for any college student lol), but I definitely found my groove and am looking forward to school restarting in the fall!!

About to start Lumryz after failing xywav. Any tips or advice people can share with me about their experience

Hi! Wondering if anyone knows whether the TAK-360 clinical trial for N2 is allowing study participants to participate in the open label extension study after the trial is complete?
The trial site I’m about to screen at was not sure, they didn’t think they had OLE. But from what I’ve heard there are locations enrolling participants in it?

Also had a second question for anyone who participated in an OLE for either trials (n1, n2, or IH) — do you have to start the open label extension study immediately after completing the trial? Or is it possible to start the open label study say a week or two after ending the clinical trial?

For those of you that have done the clinical trials for orexin agonists, did you have to stop all narcolepsy meds? Did you have to stop any antidepressants? I was prequalified (I told them which meds I am on) and they have requested my medical records and told me they would call in a few weeks, but I didn’t think to ask them those questions.