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!

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.

I have narcolepsy type 1. I collapse multiple times a day. You know, the gist. I finally got into see a neurologist and despite me bringing multiple discharge paperwork from the er stating my diagnosis via past records and my partner had my sleep study over email and proof that I was previously prescribed modafinil he wanted me to do a SLEEP DEPRIVED EEG. The first EEG had come out negative and I was also already sleep deprived. He didn't give me any kind of medication. He watched me collapse in front of him multiple times. And I fell asleep in front of him 6 times. And I left with no medication in my hand or even a referral to redo a sleep study. He also implied he had no idea what was wrong with me, but kept making comments like "yup" and "that's it". He even watched me collapse during the neuro exam and just stared at me. If I did a sleep deprived eeg I will LITERALLY GET INJURED.

It was a waste of 40 dollars. And he wanted me to come back in next week to pay amount 40 dollars but made no comment about any kind of treatment.

I'm willing to travel anywhere in Texas although I'm currently in San Antonio. I have Oscar insurance but I'll find the money to pay out of pocket if i really have to. I just figured it's worth an ask.

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.

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.

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.)

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.

Honestly, I've reached a point where I have accepted that I will probably be asleep for half my life. So I'm in my first year of university and I will be so real, I think i have been awake for like 4 out of 30 physiology lectures. I go to every lecture but and I've tried everything but it always end up with me passing out. Luckily I will say I am pretty smart so I can usually figure things out later on my own however, it takes so much extra time that I could be doing something else with. Also I want to go into Healthcare and be a nurse first and then med school. And that's been my dream for forever but I'm starting to think if it's actually possible with narcolepsy. like how am I going to keep my eyes open when I start having 3 hour lectures when the 1hr 15 mins ones are sucking the life out of me. or how am i gonna manage 12 hour clinical rotations. should I just be realistic and give up? For the past 7 years, I've just been running to catch up with everything I've slept through and yeah sure I managed to do it through highschool and so far uni, but in the professional setting I don't think it's gonna work out great and I just feel really discouraged. And the thing is whenever i talk about it to someone they say " oh don't worry, when you start doing practical things in labs and simulations, you won't fall asleep"... like seriously... I've fallen asleep while singing before or while playjng an instrument, nothing is going to stop it.

Please, there's any one with Narcolepsy who works in Healthcare or has been through similar thought processes, it would be super motivating if you could share your stories so I can know that maybe there is light at the end of the tunnel. I'm just stuck.

After 6 years, I (23f) have the answer to so many questions I spent years ruminating on. I’ve said I think I have an autoimmune condition throughout all of this time, and the only person who believed me was my doctor. Sadly, when you hear “autoimmune,” no one really thinks of Narcolepsy, so it never came to mind. I only began to consider this condition because I listed all of my not good symptoms in ChatGPT and asked it to group symptoms that might correlate together to talk to my PCP about, and it suggested inquiring about a sleep disorder.

And now, 4 months later, here we are. All of those years, being told that my weight, fatigue, constant napping, mood regulation, irregular cycles, were all due to my diet, bipolar disorder (a disorder I don’t even have), trauma, whatever anyone could come up with. Being told my naps were dissociation attempts, and that I was lazy. The only people who 100% without a doubt believed me were my doctors. They knew that I understand my body, and they were certain that we just hadn’t figured out what was wrong yet. We looked into hypothyroidism, and then PCOS/PMOS, and then hashimotos, and kept going and finding nothing. At 18 years old I was brushed off, but now we know what was going on, and I’m so grateful. I was in choir practice at my church and saw the results on a break, and broke down crying because of the relief, because now we know with certainty what’s wrong, which means now we have ideas of solutions moving forward.

Orexin is down but hopefulness is UP!!

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.

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?

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??

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?

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?

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 started my sertraline taper to prepare for my MSLT and it’s miserable. Has anyone stayed on their SSRI and had conclusive results?

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.