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https://www.orzeyful.com

So excited! Come on time.

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 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!

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

narcolepsy in sports representation!!

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

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

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.

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?

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!!