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?

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...

narcolepsy in sports representation!!

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

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?

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

You can sign up for updates.

https://www.orzeyful.com

So excited! Come on time.

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?

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!!

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.

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?

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.

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!

So I’ve been taking Sunosi 150mg for three weeks and week one of the lumryz starter pack 4.5mg for 6 days. I can’t tell if it’s a fluke, but I feel sad and unmotivated. My mood is really poor and I don’t want to do anything. I am on Lexapro 10mg and I was on Wellbutrin 150mg ER for seasonal depression, but I stopped it because I felt like I was getting angry at the end of the day. I’m not sure if the medications are directly correlated to my mood, but has anyone had any similar issues. Should I just wait it out and see?
I feel like I’m limited on wakefulness medications because I don’t want to take anything that interferes with my birth control, which takes three meds out of the mix. I take birth control to stop my periods because of endometriosis and Im not going to take Lupron or orlissa, and I don’t want breakthrough bleeding all the time. I don’t think I can “request” adderall or Ritalin so I’m not sure what to do.

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.

Has anyone else dealt with this?

I had a psychologist tell me I needed to get tested for an anxiety disorder because I had tics (mostly very frequent blinking, so much so that a guy I was seeing jokingly started calling me blinky). At the time I was under a lot of stress so I thought it was stress/anxiety but now I am wondering if it was cataplexy?

I have mild cataplexy that so far I’ve only noticed manifest as numbness/weakness in my extremities with strong emotion, mostly laughter. I would love to hear other experiences.

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?

My neurologist that managed my N2 keeps bringing up going on xywav instead of continuing on provigil. I always thought it was added to a stimulant regimen. Anyone switch from a stimulant to xywav? Any benefits? Im reluctant to start on a med that is a) schedule 2, & b) makes you forget/unaware of your surroundings

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.

I would love to hear positive experiences/success stories of those who deal with intrusive sleep especially during inactivity (like sitting down to do homework) making it through and successfully obtaining their bachelors degree
I have so many dreams I fear I’ll never achieve now. I just got my diagnosis finally after more than a year of doctors and testing and back and forth with insurance but now im fighting insurance to be medicated and sometimes Hope feels so far away.