For so many years I had been telling my doctors that I have the classic pentad of symptoms, but 2 failed MSLT tests always placed my DX as hypersomnia. I finally found a doctor that listened when I told him that I fall over when laughing and that I have sleep paralysis with some really disturbing hallucinations. I didn't get to go into detail with him about the exploding head syndrome, false awakenings, and lucid dreaming but he took notice of the other symptoms. Without ordering another sleep study, he wrote to my insurance company to request authorization for Sunosi and it was promptly approved. Frustration has been my closest friend for so long that I almost don't know how to feel about finally being diagnosed with what I have known all along.

I'm wondering if anyone else with narcolepsy or IH experiences this, and if there's anything you do to help with it because I am usually left unable to function the next day because of the weird state I'm in.

I've seen a lot of people talking about intense dreams and difficulty distinguishing dreams from reality with these disorders, but not as much about the intense and disabling effects that result from the intense dreams. So basically I'm wondering if this could even be related to narcolepsy/IH, and like I said earlier, if anyone has figured out how to deal with it.

I'll try to describe what I experience now. I'll start with the dreams and then go into how I feel the next day.

My dreams usually consist of intense emotional and relational topics, violent ones, or both. The relationship-focused dreams are often related to my struggles with fear of abandonment (which could also be related to my BPD and CPTSD) and are often about my partner leaving me. (These have some of the worst after effects the next day for some reason.) The violent ones are often about being chased, killed, and/or tortured. And the mixed ones are often about being killed and tortured by my family or partner. Almost all of these dreams also include complex stories with lots of details that feel endless and me hopping between dimensions. Because I get so many bad dreams, I am also taking Prazosin for nightmares, which doesn't seem to be doing much if anything.

The next day, if I don't purposefully skip my longer and more intense dreams by waking up around 4AM (before they usually happen / I remember them happening), I wake up feeling woozy and have to work to distinguish my dreams from reality. Even when I can, they emotionally feel real, and I have a hard time talking to people who, for example, killed me in my previous dream. (The waking up at 4AM thing works surprisingly well. I often skip the dreams completely and feel more awake and functional the next day, despite losing hours of sleep.) Starting then, and for the rest of the day, it feels like I am falling asleep for a few seconds to a few minutes at a time every 2-15 minutes or so, which doesn't happen nearly as much if I wake up really early and "skip" longer dreams. I also slur my words for at least the first 30 minutes / hour of waking up and stumble and constantly almost tip over when I try to stand or walk. I almost feel dizzy or lightheaded for most of the day, like there's this weird heavy sensation in my head. I also get flashes of my nightmares or sensations of deja vu throughout the day, as well as the feeling that my dreams are trying to "suck me back in to them." Plus I feel scattered, distractable, and slow. That, along with falling asleep every 2-15 minutes, makes the idea of getting anything done feel impossible.

But, again, if I wake up at around 4AM and "skip" my long and intense dreams, or if I don't remember my dreams for some other reason, almost all of these symptoms/experiences are a lot better. (There also might be more that I'm forgetting, but this is what came to mind, and I don't want to make this post even longer.)

So, yeah, does anyone else with narcolepsy or IH experience this? Any tips for dealing with it (other than waking up at around 4AM every day)? Thanks in advance!

How do you deal with the resentment you begin to feel for the ones around you who claim to love you most when it comes to this diagnosis? Not because they're healthy, and you're not, but the lack of empathy from them, competition, and downplaying your symptoms after official diagnosis? Mine is specifically my mom, who I once referred to as my best friend, which is why the resentment I feel is tearing me apart. She was the first one I told about the diagnosis, after suffering for 15 years, I was hoping she'd be the one who understood how validating this was for me. I've tried talking about this group with her and how reading everyone's experiences have been so validating for me, and that I didn't realize that some people are unable to work because of how debilitating this is for them. She immediately interjected to say "Don't get any ideas! I hope you don't think this diagnosis just gives you an excuse to give up, and stop pushing through it" as if that's even an option for me. (I'm a 30yo single mom, with a full time job) but I've kept "pushing" as long as i have because no one believed me, not because it was easy to do or felt manageable, I literally had no choice. On a different occasion I made a reference to only sleeping for 2 hours the night before when requesting she help me keep my 4yo daughter for a couple hours so I could get a nap, once again before I could even finish she said "well i couldn't sleep last night either, i only got an hour." despite knowing that lack of sleep on a brain that already believes they lack sleep is significantly worse than a normal brain lacking sleep, it still was a competition about her having it worse than me, when she could have just told me "no" and left it at that. She also alleges to know someone who has narcolepsy who manages just fine on Adderall alone, and is able to "do life" like normal, indirectly invalidating anything I have to say, because we must be the same, and I'm just making excuses on why that doesn't work for me. She mentioned the knowing of this person within an hour of my Dr's appt where i was officially diagnosed btw. I then found a study essentially proving the difference between a normal brain, and a narcoleptic brain, and how a normal brain would need to be sleep deprived for up to 72 hours to be comparable to a narcoleptic brain, I sent it to her because I thought it was interesting, but also because I am so desperate for her to understand that it really is that serious, attempt to dumb it down in a way she could relate to, to be able to give me some support and care....she never even responded. A few days later she text me starting a whole different conversation about something unrelated. I just feel so disappointed, and sad, and those feelings are quickly turning into resentment. I love my mom, and I don't want to believe she would ever intentionally do something that harms me, but despite her knowing that this is something that harms me, it's like she doesn't realize she's doing it because she has the "no one helped me, no one made accommodations for me, so don't ask me to make them for you" type mentality. And it's driving me insane because I might be 30yo, but I'm still your child. And as a mother myself, I could never even imagine minimizing and ignoring something my child was going through, even if I went through the same exact thing and had nobody to help me, that would make me want to make sure my child HAD somebody in her corner, even more, regardless of how old she was, because that's MY child. Idk I guess I'm just disappointed because I expected to be supported by those who claim to care about me, and I'm experiencing anything BUT support.

I was diagnosed with N2 a couple of years ago. When I got a fantastic new sleep doctor about six months ago, he asked if I ever had cataplexy, especially after laughing. I said no. I had watched YouTube videos of people with it and figured that wasn't me.

Fast forward to a conversation with my REMS nurse. I was telling her about the darkest periods of driving my car during the time my son passed away—specifically noticing that I literally couldn't hold my head up. She stopped me and said, that’s cataplexy.

That made my brain click into gear and connect the dots to another heavy moment. A couple of years ago, I had just returned home from seeing my dying father for what I knew was the last time. I was drowning in grief, utterly pissed off because the person watching my dog had neglected him (he was caked in waste), and furious at my work for being absolute jerks while my dad was dying. I was outside hosing down my dog, raging and emotional.

The next thing I remember, I was on the ground with a broken humerus. I had completely convinced myself I just tripped over something, even though I was already done hosing the dog off. I couldn't explain how I ended up on the dirt. Because everyone says cataplexy happens when you laugh, it never once crossed my mind.

Long story short: My doctor ordered a CSF test. I don't actually mind needles in general—I give blood all the time and used to get allergy shots up and down my arms and back—but the thought of a needle near my spine absolutely terrifies me. I wouldn't even consider getting an epidural during the birth of either of my kids because of it. But I forced myself through the lumbar puncture, and sure enough, it confirmed NT1.

Has anyone else's cataplexy been almost unnoticeable or masked by heavy stress/negative emotions? Am I the only one who didn't understand what cataplexy actually looks like outside of dramatic internet videos? It took a broken bone and retracing my steps through intense grief for me to finally see it.

i’m at my limit. recently diagnosed. started xywav in august and this week hit the physician-prescribed 6/3g dosing.

i’m losing it. i’m sleeping less than i ever have. i’m not eating 2-4 hours before bed, i’ll have a drink 8 hours earlier or nothing at all, i’ll work out hard or lounge around, no caffeine or caffeine. it doesn’t matter. there’s no consistency. no guaranteed good night. and the days i do the best seem to be the nights i do the worst. i’m at my wits’ end here.

on the rare good night, it’s a great, beautiful day. i function how i want to. but it’s not just frequent enough to be worth it right now.

so what am i doing wrong??

I’ve spent my whole life absolutely exhausted. My dark circles look like I color them on with a purple marker every morning, and I’ve found photos of myself as early as 6 with the same exhausted, unfocused eyes. Once I was old enough to understand depression, I figured that had to be it. Tried countless medicines and none of them touched any aspect of my mental health or exhaustion with a ten foot pole. I eventually made it to my 20s, burnt out and with about 10 brain cells left. My emotions are shot, I’m too tired to feel anything anymore.

I would have full blown panic attacks about a green light that appeared on my ceiling a few times a week for years growing up. We lived in the sticks with no external light sources. I would get up and beg my parents to come see it, but no one ever saw it. One day, it disappeared and I never saw it again. Turns out, this was my first and most prominent hallucination. It’s worlds better than some of the others you all have experienced, so I’ll count my blessings.

I’m too tired to work a normal job. Thankfully I have a flexible remote job, but without that, I’d be unemployed. I tried a regular 9-5 and it was only by the grace of god or some ancient deity that I made it out alive. The exhaustion led to seemingly chronic illnesses which worsened my mental health and really stripped any will I had to live.

I’ve been on stimulants for roughly ten years for ADHD, usually the lowest dose humanly possible. I up the dose and crash out, feel bugs all over my skin and want to remove it somehow. Heaven forbid I fall asleep after taking my meds, I enter the spirit realm and am even more unable to wake up. There’s about 5 layers of dreams, all more “asleep” than the next. I wake up in my dream and enter another dream state, and ultimately get lost in a maze of alternate realities. When I do somewhat wake up, I’m paralyzed and unable to speak until something jolts me awake, like a door slamming or the dog barking. The paralysis happens with or without stimulants in my system, but the layered dreams are a fun bonus when I do take a nap on meds 💅 Maybe there’s a service dog out there that would wake me up after an hour?? Alarms cause an adrenaline dump and make me feel like I was in a rollover car crash or something catastrophic, when all I did was wake up 🫠

Some mornings I feel so unalive that I have to shuffle my feet and hold onto the walls as I walk down the stairs. If I pass a dog bed, I typically collapse into it and start napping… they’re really underrated nap spots. Once I’m down, I’m practically paralyzed and unable to speak until my brain decides to wake up. My husband will find me and shake me like someone in cardiac arrest until my brain finally decides to get its creative juices flowing and come back to the land of the living. The weirdest thing is I am in a grey area between asleep and awake, but it’s more of paralysis than it is a nap. I want to grab my phone or yell for him, but I can’t. I have to wait for him to find me while I listen to him walk through the house looking for me.

The cataplexy is a whole other conversation but I’ve read plenty of threads addressing that. Does anyone else relate to these experiences? I try to talk to family or friends about it and they look at me like they’re about to send me to the sticky sock vacation home. Just looking for a community out there that can validate my experiences without threatening the psych ward.

*disclaimer: I sound depressed but I plan on continuing to float through time and space like some brainless single celled organism until there ain’t no more. Just vibin.

How does it impact your nighttime sleep?

I know that they can cause insomnia but I was wondering more about sleep quality- fragmentation, vivid dreams etc. From what I have heard it doesn't seem to impact sleep as much? So more of a daytime med than a monotherapy likely?

Thought I would share my current experience I slept 8 hours last night and was looking forward to napping all day long. I thought I would be well rested this evening and I even made plans to do things tonight. Imagine my suprise when they told me they would be waking me up after 15 minutes. lol. So here I am with a headache tired with the day off and thought I would be getting the best days sleep ever.

Good news is I slept 8 hours last night and have had no trouble falling asleep at the 7:30 am nap and the 9:30 nap.

Anyways just wanted to share my experience.

Ok, this post is probably going to be TMI, I won't add gross details but just a warning.

So, im on my period/menstrual cycle and when I work, I use tampons because I work a very heavy labor job, its just safer for me.

After work, I always take out my tampon and put on a pad and then take a nap.

Well... I worked a long shift, I was exhausted when I got home. I dont remember anything I did when I got home, but I do remember waking up... and I don't have a pad on.

I feel down there really quick and there's no string...

The day after, I didnt bleed as much as I usually do on that stage of my period... also my stomach hurts and im kinda bloated...

Im embarrassed to tell my mom and doctor (im 17, I'll be 18 in two months.)

First 2 nights on Xywav. I wake up before my alarm for the 2nd dose goes off. I sleep okay once the dose kicks in but as soon as it's wearing off, I'm tossing and turning the rest of the night. I'm on the lowest starting dose. From experience, do you think that this will improve with a higher dose?

After months of battling for it, I finally got my Lumryz starter kit last week! I started at the 4.5 g dose that night, which was a bit stimulating compared to what I was expecting (however, I have a high tolerance for CNS depressants to start with), but even so I immediately saw improvements in my otherwise treatment refractory EDS. I haven’t even needed my daytime meds to stay mostly awake and clear headed during the day, and my mind is clear in a way that I haven’t seen in a least a year. It’s truly amazing to see how quickly I started getting more deep sleep that is also better consolidated (literally night one I got 45 minutes of a deep sleep period instead of 3 intermittent 5 minute periods). I still fall asleep at 8 pm or so, but that’s 13-14 hours of mostly wakefulness a day!! I’m so happy with the med and look forward to continuing to titrate up and find my therapeutic dose.

Hello fellow sleepies,

Does anybody else feel like they’re on autopilot 24/7? I’m trying to figure out if this is the narcolepsy, depression, or if I need to look into other possibilities ADD/ADHD.

What I mean is most days I’m kind of just there. I feel so dumb and it’s hard to think. I have to repeat things a few times to remember anything. I’m not in the moment for things, just sort of react and rely on muscle memory. It’s hard to focus on things lately.

I just got a new job and it’s been hard to keep up with all the trainings. I can go to them and be awake, but I’m not really retaining. I was a straight A student through college so this is new for me. Usually learning came with ease. I have to constantly look up words and definitions I just learnt.

Also my short term memory is AWFUL. I will get a result for a test I run at work, remember it, tell myself to remember it because my lead will ask in a min or two, and then two minutes later have to retest because I fully forgot. Can’t even give an estimation forgot. I used to be able to memorize anything 😭

Also when I play pickleball, I’m kind of just there. I will repeat a mistake and say “don’t put the ball over there” and then remember that I told myself the same words the point before. I have no focus and don’t think before anything. Just hit. Just do.

Can this be attributed to sleep quality? I’m currently off of Xywav for 4-5 months. No other meds.

I genuinely don't know what to do anymore. In high school, my mom would wake me up; sometimes it would work, and sometimes I would have full conversations with her and go back to sleep after, with no memory of talking to her. Now I am a college freshman, and I sleep through my 11 am class almost every day, I've missed multiple exams, and I don't know how to continue. I have a watch that shocks me awake, and it worked for a week, but now I can sleep through it at the highest setting. My doctor wanted me to start meds for nighttime in addition to my modafinil, but as a college freshman I can't really give up drinking, so they aren't an option. I am feeling completely hopeless.

If you don’t want to read this skip to the questions

I’ve settled at 4.25g x 2g of Xyrem. Anything lower or higher than 4.25g makes me sleep all day and anything higher than 2g makes it impossible to get out of bed.

That being said, I feel like shit. I wake up exhausted, my brain is off by 12pm, and I’m in and out of sleep until 7pm. I’ve seen A LOT of improvement since before I started this medication and I’ve only been on this dose for a little over a week but like… when does it get better?

I see people say they felt better at their therapeutic dose after a few days but I know it takes months to pay off sleep debt… but what does that look like??

When you found your therapeutic dose what was the first week like?

When did you see real improvement and what was the improvement?

How gradual was the improvement and what did that look like?

Many years ago, I came across a word: 'oneirophrenia', from the Greek words "ὄνειρος" (oneiros, "dream") and "φρήν" (phrēn, "mind").

It is defined similarly to schizophrenia but separated mainly by the important clinical presence of depersonalisation/derealisation and exogenous hallucinations, meaning it presents similarly to delirium rather than a true psychosis.

At the time, I thought nothing of it, but after going through many years of life and after having received many various diagnoses, schizoaffective disorder and narcolepsy being two of them, I began to think more about this word.

I was diagnosed schizoaffective, first, for unrelenting hallucinations that did not respond to antipsychotic medication. I tried over 8 of them. Nothing helped me. I remember my complaints were always the same. I complained that I did not feel real, that I felt separate from my body and watched everything from a distance. My memory was absolutely horrible (still is). I hallucinated without any ability to determine what was and wasn't real (exogenous). I quite literally remember seeing fake mice, 1 foot tall three-legged bugs, millions of mites over the floor of my apartment, and a person staring at me from the corner of my room. I was horrifically depressed and anxious. I spent months of my life crying all day and sleeping in between.

Then, I was diagnosed with narcolepsy. I started Xywav. I started adderall again. Gradually, I got better, and most importantly, for the first time in my life. Gradually, I stopped hallucinating (it was VERY gradual, but I can confidently say I have not hallucinated anything in over 6 months, save for very minor perceptual disturbances). I was told I was "treatment resistant", and suddenly I knew that wasn't true. I just needed the right treatment.

Now, looking back, those 2-3 years I spent in that dark place speak to me differently than I was led to believe. I do not think that I was in a typical psychosis. My hallucinations were never just 'in my head'. They were just as real as anything else. I remember feeling like my reality and my mind had collapsed into one blending and shifting thing that I could never predict or understand. I spent every day in utter misery crying myself to sleep or too manic to control myself wisely.

This leads me to believe I was in a state of oneirophrenia. Granted, I'm not a medical professional, and oneirophrenia is an outdated term that is rarely used in modern medical literature, but if I were to name that condition I was in, it would be oneirophrenia, not schizophrenia.

I felt like my dreams and reality condensed into one. This makes me wonder if anyone else in the subreddit has heard of this word. If you have, or not, can you think of a time in your life when you were struggling with those things: depersonalisation, derealisation, and hallucinations ?

I want to hear what others have to say about this, because I genuinely think oneirophrenia is a psychological state that results from chronic sleep deprivation, which is something that many narcoleptics who are undiagnosed experience during their lives (from not entering slow wave sleep).

Maybe this could help bring awareness to the darker sides of this disease. At the very least, I hope some of you may appreciate the new vocabulary word !

My 13 year-old grandson just got home from his first sleep study. I have suspected narcolepsy for a couple of years, especially after witnessing him have cataplexy last year. After he started getting in trouble at school for falling asleep, my son made an appointment for him to be seen. Since he was at a pediatric hospital, the tech gave his parents the results of each nap. He hit REM in 3 out of 5 naps, although they said 1 doesn’t count because he didn’t get there until 15 minutes and 30 seconds of being asleep. Apparently it doesn’t count as REM if it’s not under 15 minutes. The longest it took the kid to fall asleep was 6 minutes and the shortest was 1 minute. They won’t officially know anything until their follow up appointment next week, but it sure seems like a slam dunk N1 diagnosis.

Here’s the bittersweet part: I’ve lived my whole life with this wretched disease, disorder, whatever it is. I wouldn’t wish it on my worst enemy, much less my grandson. I didn’t get my N1 diagnosis until my mid 30s, and it caused so much trouble in my marriage, friendships, work, etc. He may still get in trouble at school for falling asleep, or have future relationship problems because he falls asleep the second he hits the bed, have friends bail on him because he’s always too tired to go do anything, or have to sneak naps in the bathroom at work just to make it through the next couple of hours until lunch. But at least now, he knows why! Now, he can go into relationships with this knowledge. Now, if he gets in trouble at school, his parents can raise hell. Now, if his friends dump him, they weren’t friends worth having to begin with. This life really sucks, but at least this kid has a fighting chance now.

I (34F), live in Mexico, and I was diagnosed with NT2 just 13 days ago…

These past two weeks have been strange. I feel like I’m having to rethink so many things about myself.

For years I thought I was just tired, maybe depressed, unmotivated, or that I simply didn’t want to do certain things. I don’t think I ever managed to explain to anyone (or even myself) that what I was feeling was actually sleepiness. I thought fatigue and sleepiness were basically the same thing.

I also struggled to know what I actually enjoyed doing. I remember someone once asking me if I liked jogging, and I thought, well, no, because I always start yawning. Now I’m wondering how many things I thought I didn’t like just because they made me sleepy.

It’s weird to think about how much I normalized it, even as I was slowly losing the ability to get through a normal day.

My MSLT was a surprise. I fell asleep in around 2 minutes during every nap, once in just 20 seconds. I was convinced I was mostly awake.

I’m now on 100mg of modafinil and learning things that seem so basic, like the fact that a 20-minute nap can actually refresh me, while sleeping for 4 hours during the day doesn’t really help.

I’m also trying to find a community in Latin America, which has been surprisingly difficult. I don’t have access to oxybates here in Mexico (as far as I know), and I’m really interested in improving my nighttime sleep, not just staying awake during the day.

Did anyone else go through this after their diagnosis? Having to rethink what you actually like, what you’re capable of, or even who you thought you were?

And if there’s anyone here from Mexico or Latin America, I’d love to know how you’re managing treatment and whether you’ve found any communities. Maybe I’m just looking in the wrong places.

Diagnosed with n2 in 2020. Was seeing a sleep doctor who was a pulmonologist not neurologist. Now that im seeing a neurologist they want to try modafinil.

Has anyone went from adderall to modafinil and had it work better for them? Adderall really isnt doing much except pulling me out of bed if I take it 30 min before I have to get up

I hate waking up every day feeling like I haven’t slept in ten years. I hate finally finding a treatment that works (Xyrem, Vyvanse, Ritalin, pitolisant, etc.), having a great routine, and then three weeks later… surprise, I feel like shit again.
I’m currently on Xyrem and Vyvanse, and I’m trying my best to appreciate that things are better than before. I have a great routine and I eat well and do sports. But I never get a break from this disease. Even my naps are awful. I hallucinate and wake up 3–4 times during a 30-minute nap, feeling worse than before.
I know others have it worse, but I’m exhausted from constantly fighting this. I just want a break and feel better for a couple of days. I also realized I lost the ability to remember how it felt like to be awake as a kid. I used to be able to remember and now I can’t recall anything. And I’m starting Uni again and just stopped socializing. It is too much noise, too much energy I need to invest in my studies and work so I can survive lol

Today was just shit :/

After two year old fight to figure out what's wrong w me I took a three hour ride to a doctor to be told I have narcolepsy n he wanted to start me on medication which I don't remember the name but I think it was modanifil? Which scared me and I told him I want a redo Polisomnography+MSLT n he was okay w that n I'm waiting for a call with a date. N now I got a problem, obviously I'm suffering n want to get better, BUT i take desogestrel as birth control and read that modanifil significantly lowers the effectiveness n I'm wondering if there's any good other option? I'm from Poland so there's not many BC options like tying tubes legal in here.

I am waiting to get my starter pack. I filled out the paperwork on 09/17/26. My insurance has approved me. Now I am waiting for the pharmacy to reach out. How long did it take to get the medication? CVS Specialty Pharmacy sent a message saying they received the prescription, and a week later they said it was invalid but didn't say what needed to be corrected. They asked me to call my provider as well and let them know the prescription was invalid, but they wouldn't say what needed to be fixed. The lady on the phone said they can also call in a verbal order. I am not sure if they do a verbal order for a controlled substance. A verbal clarification, but not an order. I may be wrong. This is getting frustrating.

Do you ever get days where it’s like you’ve been pulled down into a black hole, you can see and hear the real world, but you just can’t seem to get back to it? I could not stay awake today in work, the crazy thing is, I keep working even though my brain is turned off; then I’ll jerk back to reality for a few seconds; and then back I go again. Lost count of the number of times I dropped whatever was in my hand today, since I’d fall asleep and I guess my hands went limp 🙄 Also caught myself trying to put a random object into my mouth more than once too……sleep eating, what’s next?! I’ve also been known to have conversations with people also, and not remember a thing about it: or I’ll regain consciousness in the middle of the conversation and not have a clue what is going on. I just want control of my body back!!!

I’ve had sleep problems my whole life. Got misdiagnosed with sleep apnea months ago and the clinic tested me again due to my doubts - turns out I have type 2 narcolepsy. My biggest problem with treatment options is I have severe anxiety. Mainly in social settings (aka work everyday), so I’m nervous about these waking agents triggering that for me. What has helped you? Any info is appreciated thank you!