r/Narcolepsy

Wondering if anyone else has similar side effects with Xzywav. I am currently at 3.75 g twice a night. Increasing to 4.5g tonight.

• Dry mouth

• Loss of sensation in legs, hands or other limbs

• Less dreaming (low key makes me sad since I always have so many dreams that are WILD but I’m not waking as much)

• Increased sex drive (Not mad since my other meds killed it)

• The shits every time you eat and does it get better?

• How long does it take yall to fall asleep? (Takes me over an hour normally. Can I have insomnia and N1??)

Thanks! 😊

Is there anyone here who sleeps poorly and wakes up during the night? What helped you? I know the common answers will be physical activity and magnesium, but that doesn’t help. I’m physically active, I put my phone away an hour before bed, and I still sleep poorly and wake up at night. Does anyone have any life hacks?

My doctor hasn’t called yet, but the results of my MSLT were just posted to MyChart. Obviously, I don’t have a dx yet, but I’m feeling so much relief. My average sleep latency was 7 minutes, and I slept for all five naps. No SOREMs, which I expected. My symptoms fit more with IH. But I’m so happy that I can see my results and not stress about it. My tech didn’t tell me anything at my study, which makes sense as I’m not sure how much they’re allowed to share with the patient, but I’m so happy to be able to see it now.

My last nap, I didn’t think I’d sleep at all because I’d done nothing but sleep all day and I was so anxious to be done, but it was my shortest latency of all (3 minutes). I went home after my test, made dinner, and slept through the night 😅

I just kind of stay away from sex now but it used to be super common lmao. Was wondering if this was common

Hey guys never posted anywhere before and the only reason I am is I’m looking for some advice. I’m getting my wisdoms teeth taken out and there advising me to take “codeine” my first 3 days after. first they wanted me to take oxycodone and I refuse to take that. Anyways my question is when taking it once a day in the morning at a 30mg dose, am I safe to take my xywave around 11pm? Or should I refuse entirely and avoid this and try to toughen it out with just crapload of Tylenol maybe?

shi is $1k/30 days is that not an insane price for a medication

Hey everyone!

I'm fairly new to this sub, as I am waiting for a diagnosis, but I've started carving out time to nap every day during lunch, and I've stopped being able to tell if I'm actually asleep. Is this a common experience? It makes me so worried about a sleep study in the future. Sometimes I feel better after I attempt to sleep, and other times I don't and that isn't helping my anxiety about it.

I think I spent the whole time from 10pm last night until my last nap in a fugue state. In preparation, I read a lot of tips on this forum for handling the test so I knew going in that feeling like you didn't sleep was pretty common. Boy was I not prepared for how that actually feels.

Every time I laid down for my naps my thoughts were racing with anxiety about the test with an underlying current of my normal ADHD "one sheep, two sheep, three fish, blue fish, AYY macarena". And every time it felt like I was remotely drifting off, I got excited that I may actually be going to sleep and woke myself back up.

I brought a book and some less stimulating crafts to keep myself occupied between naps but I ended up just staring at a wall for a good portion of it to the point that my sleep tech kept barging in to make sure I wasn't sleeping.

When they asked me if I slept, I swore up and down that I got drowsy but that was it. They let me go after the fourth nap and told me I slept in all of them and hit REM (don't know how many times, will have to wait for the write up).

Shout-out to my sleep tech who is also a huge nerd. We spent the entire time he was wiring me up talking about MTG decks that we're building. Kenny, you're awesome and your decks are mean.

Anyone else almost obsess over researching narcolepsy after diagnosis?

Newly diagnosed with N1, and it feels like constant lightbulbs going off in my head realizing how many symptoms were underlying for so long. Cateplexy only started showing up about 5 months ago, which is what finally pushed everything into focus.

Now I’m constantly reading research, stories, experiences, symptom lists, findings… almost like I’m trying to piece together my entire life through this lens.

But at the same time, I still question everything and second guess myself constantly. Did anyone else go through this phase after diagnosis?

I can’t seem to shut my brain off with researching/thinking about it lately. I do find it fascinating too, but now I keep questioning whether certain things are actually narcolepsy or if I’m just hyper aware of everything now after diagnosis. It seems like I learn something new every day. I suppose knowledge is power, but…it’s complex!

Hi all! I recently awoke from yet another nightmare nap and had a question for others who share this experience.

After the initial panic and emotional overwhelm had passed, I tried to analyze what the negative entities were that I was “running from”.

Sometimes, the situation itself is the problem (running out of time, running from a natural disaster) or the attack is more communal (like a war/invasion). But I have these dreams where the dread and fear are more personal, like something is haunting and chasing just me. In those dreams, the negative thing always takes shape as a creature/ ghost of some sort and it’s typically a team of them.

My issue (so to speak) is that I can’t ever seem to remember what these creatures(?) look like. So I’m curious if anyone else has experienced this, and if so, do they have a more specific version of the “thing” they’re running from?

For context, I was diagnosed with OSA/UARS a decade ago, on CPAP since, which was successful for a while, then very up and down. My sleep has been awful for about a year, so went back to figure out what was going on.

Had an expensive home sleep study with EEG in 2025, which also added severe PLMD to the diagnosis. Sleep was severely fragmented by PLMs and sleep disordered breathing. I have RLS that I can mostly ignore.

Then went for an in-lab study. Horribly sleep deprived, slept 4 total hours, from 11 pm to 3 am; RDI 27, AHI 13, PLM's. The nurse came in at 8 am and said they weren't even supposed to do the mslt, but the sleep dr wanted to go ahead. This is what came back:

SLEEP ARCHITECTURE:

The patients sleep was fragmented and she went into REM sleep very quickly for a brief period with a REM onset latency of 5 minutes. The MSLT with 2 REM episodes and REM on the NPSG within 5 min all suggests narcolepsy even though the sleep onset latency on the MSLT was 13.1 minutes."

I don't even know what to do with this....Is this narcolepsy as well as OSA and PLMD??

Narcolepsy makes it difficult for me to complete routine chores. Some days I can function, while others I feel absolutely exhausted. I'm trying to figure out better ways to survive. How do you manage your daily responsibilities while living with narcolepsy, and what strategies have helped you keep on track without burning out?

So I definitely can't function without some kind od stimulant medication, but a lot of them make my anxiety so bad it's basically unbearable. Right now I'm on Adderall XR 20mg, which DOES help with sleepiness a bit, but heightens my anxiety a lot. Sunosi was okay I think, but I haven't been able to renew my prescription. I've tried Modafinil and Armodafinil in the past as well and iirc they didn't do much.

TLDR; anyone with severe generalized anxiety, have you found a stimulant that doesn't worsen it? Thanks!

Just some background information... I have NT1 and have finally been able to get my symptoms of multiple disorders (Ehlers-Danlos syndrome, Autism, ADHD, and cPTSD) and nerve and joint injuries under control to the point I want to start working on moving off of disability and build a small business idea and hopefully grow to becoming a mission-driven for profit business to help people with disabilities and foster teens aging out of the system.

I drive a manual transmission car, because that is the *only* way to keep my sleep intrusions away. When driving an automatic, I have intrusive thoughts from microsleeps that tell me I am dreaming. I also deal with tactile hallucinations that make me feel like I am floating, and objects around me start appearing as not real, or dream-like. It's very scary. This does not happen with my manual car. It's like I am a completely normal person. I have had 2 sleep attack while in my manual, but the jolt of the improper shifting immediately gave me the surge I needed to get home safely. (home was only 5 mins on neighborhood streets both times).

My car is older, being that manual transmissions are not common in the US, and needs quite a bit of work. I have slowly been able to get things working in between shops, my boyfriend being a car guy, and me working on it myself, but it still needs more.

With that said, has anyone used an assisting driving device that has helped? If I can get my doctor to prescribe them, then vocational rehabilitation or other programs will be willing to help me. I hope to use her letter to get noticed and continue to build social networking.

Any advice would be super beneficial. I appreciate everyone! :)

Hello. I’ve been diagnosed with type 1 narcolepsy for 8 years, but I’ve probably been affected for about 30 years. I seem to be having more and more trouble with my memory. As soon as my medication stops working, it feels like I can’t retain anything anymore. I forget conversations I had the day before. Am I the only one?

I guess this is just me being curious! I was diagnosed N2 last year. I’m tired pretty much all the time and take armodafinil as well as a good amount of naps. I noticed a lot of people talk about a symptom of sleep paralysis and hallucinations. I’ve always had vivid nightmares, but no paralysis or day time hallucinations. Do any other N2-havers not experience paralysis?

I have N2 with Cataplexy, and I just had a week of late nights for work averaging like 4 hours of sleep a night this week, but in the mornings when I wake up I'm more alert and focused than I am on like 8-10 hours of sleep on non crunch mode times at work. Does this happen with anyone else?

I had this same feeling whenever I wake up early for hikes or snowboarding, having to drive up to the mountains as 4 am on less sleep feels more energetic.

Since stopping one of my meds (for unrelated condition) I’ve noticed my sleep paralysis has gotten so much worse - any advice on things that help/how to cope with this? (it’s giving me so much anxiety)

Wondering if anyone else has experienced major symptom changes/progressions after getting off of Xywav?

I (24yo female w/ N1) began Xywav last August and got off of it at the end of March due to side effects causing other major health concerns I couldn't endure.

It was a bittersweet change because Xywav had treated my N1 symptoms better than anything I've tried in the ~5 yrs since my diagnosis. In particular, I only experienced cataplexy 1 or 2 times over the 8ish months I was on Xywav, which was a major improvement from the 3-4 times per month I was experiencing it pre-Xywav.

Since getting off of Xywav 2 months ago, my cataplexy has been worse than ever before. I'm experiencing it multiple times a week. I also seem to have developed/discovered a handful of new triggers during this time. Previously, laughter was my only trigger. Severity ranges anywhere from minor drooping of eyes/mouth/slurred speech or buckling knees for a second or two, to up to like a minute of full body loss of muscle control (this is the one thing that isn't drastically different from my previous experiences with cataplexy).

Been feeling confused, discouraged, and anxious about why this is happening, and what it means for my treatment journey. Would love to hear if anyone has gone through anything similar!!

I have N1 and when I miss my depression medication (vybrid) I literally do not wake up.

When I am "awake" I'm a jumbled crying confused and very much still dreaming ball of nonsense. My face puffiness and allergies become so bad it feels like I went apple bobbing in a barrel of pollen.

Each hour I'm late on my medication adds to the effect until it reaches maximum after about 8 hours.

But even missing my medication by 1 hour makes staying awake much more of a chore than it is usually, why???

Anyone else having this issue??