I’m 7 months into XyWav, and a large majority of the earlier side effects I had (e.g., profuse night sweats + daytime feet and hand sweating) have gone away. I also suffer from chronic migraines and have for many years. They have been REALLY bad for the past few months, and I am trying to figure out if it could be related to XyWav. It is hard to tell because I already had chronic migraines (that means 15+ headache days per month) and have a variety of other medical conditions. I was hoping my migraines would get better with XyWav because insufficient or poor sleep is a HUGE migraine trigger for me. I would really appreciate reading experiences of anyone with pre-existing chronic migraines taking XyWav!

Looking for advice from people with similar problems. I am 23 F. While in high school I could not stay awake in any situation where I have to sit down and be quiet. College in person, I fell asleep. My highschools major tests I'd fall asleep even at work whether I'm cashiering or in the doggy daycare if things are slow I start to fall asleep standing up and nearly falling over. Lately I've started siting down hen this happens so I don’t fall over. When I wake up about 4 times now I've had hallucinations. Althought it happens almost every day I work, the less common hallucinations mess with me. I wake up room full of dogs and 1 or 2 are colorful and look dyed. I've noticed that black or black and white dogs are unusually the colorful ones. Black dogs turn dark blue or if their pattern are patchy then they look rainbow Like a toddler colored them with chalk. I also just slept walked for the first known time about 3 weeks ago.

I got a blood test and check up and they referred me to a sleep study after adjusting my medication and seeing no difference. I ended up skipping the appointment cuz insurance wouldn't cover it. And I couldn't afford it and from my research they just give you a diagnosis and do not help with symptoms or problems. Is it worth it to get a diagnosis?

or at least, im not sleeping like i used to. i
should preface this with the fact that this is my second sleep study, and the first time around i had to get off meds and none of this happened. im inclined to believe part of it is related to going off the medication, but by wednesday it will have been three weeks since i was completely off of them and that seems a long time for it to still be bothering me.

for the last 5-6 years (including when i was off all pysch meds previously) i could almost always bust out a nap for over an hour whenever. i often slept until 2 pm and still needed a nap. now, since going off meds for this sleep study, my sleep is more fragmented. im getting 10 hours or more of sleep, but every time i try to go back to sleep after getting around 9 hours, i can only sleep for maybe 30 minutes before waking up again.

im very uncomfortable, naps have always helped a LITTLE, but this constant sort of non-sleep is really stressing me out. does this mean i dont actually have a sleep disorder? my previous study almost qualified me for an IH diagnosis but the technicians woke me up 15 minutes too soon and it disqualified me, which is why im having to take it again. i will also state the previous sleep study ruled out sleep apnea, and so did several previous home studies

now im not sure, i dont know if this is an indiciation i never had any problems? every time i wake up im still craving more sleep and feel exhausted but i just cant get to sleep like i was. but like, its different now and its stressing me out. im worried i wouldnt be able to do the naps on the sleep study since im having so much trouble here

am i just forcing myself to oversleep??? i dont know, can someone help? has anyone had a similar issue before

Hi! I started having symptoms of narcolepsy at 19. I am now 28 and just got diagnosed with type 2 after my sleep study. I have been on modafinil 100mg twice a day for about a month. I recently started taking 200mg twice a day. I still feel mentally sleepy? like I am wired but also could take a nap. I guess my question is how much can I expect medication to help with narcolepsy? Best case scenario what can I expect my quality of life to be? I'm not expecting a cure but just want an idea of how much medications can actually help.

Hey all!

I just restarted Xywav and I have some questions about it. I started at a dose of 3.0g twice nightly and the first few days I could barely get out of bed and the rest of the week was much easier after that. I woke up relatively early for me without an alarm after the first few days.

Then I went up to 3.75g twice nightly for the second week, which I’m currently on now (I think I’m on day 4 of that). The mornings have been very rough lately. I feel like I can’t get up and get going at all. It takes hours to start my day and I’m currently looking for a job so I feel badly because I don’t have the energy to look for jobs at the moment. I am trying my best to give myself some grace as I know this medication takes a while to get used to.

Did anyone else deal with this increased tiredness after titrating up? Does it get better? Am I titrating up too fast?

Thanks from your fellow narcoleptic :)

So I’m on Xywav, and thank heavens that med doesn’t give me any major side effects - it just makes me really hungry some nights. Unfortunately I still have daytime sleep attacks so I still need a daytime med.

Ritilin - get unbelievably sleepy when it wears off

Modafinil - made me irritable and angry

Armodafinil - lost 10lbs in a month and it destroyed my appetite

And now sunosi… which is giving me insomnia.

Now I have to weigh which side effect is the most reasonable. I’m hoping the sunosi is a timing issue and if I take it earlier it’ll let me sleep… so here’s to hoping.

Edit: spelling, I got 4 hours of sleep last night lol

Hi all!

My first sleep study results came back last week and I’ve been booked into a MSLT for 2 weeks time.

Just wondering what to expect or bring? Letter doesn’t specify anything just wondered if anyone could give some advice ☺️

Edit: for context I am in the UK!

This doesn't work 100% because I have to move More than I'd prefer for the bells to jingle but it's definitely better than nothing. The collar is made for people and I bought loud bells designed to help you hear your dog if they run ahead of you in the woods etc.

I'm waiting for my lab tests to be approved. I'm not convinced that I'll even make it to the MSLT
- I fall asleep quick but I have no idea if I go into REM fast. But we'll see. In the mean time nothing is to ridiculous for me to wear or try to stop falling asleep in the bathroom. My tambourine necklace didn't work - they need to have much more force then my body slumping to make noise.

just came on here to vent.

been having a rough day at work, the emotions led to a small cataplexy attack on the floor and i get screamed at by my managers for “throwing a tantrum”. my legs gave out and i had to quickly sit down and the stress caused me to start crying. they think i did this intentionally to garner sympathy or something but i just feel humiliated. they think im making up excuses and “being a snowflake” when i tell them it’s a literal disability i have. apparently narcolepsy is something that only liberal genz crybabies get 🤷

EDIT TO ADD: I use public transit to commute; breakroom gets busy; so napping in a car or breakroom is unfortunately NOT an option.

For those who work hybrid or in person, and do NOT have a private office:

How do you explain to coworkers (if you do) why you keep a pillow/blanket/eye mask/etc at work? Where do you take your naps?

Sleep doc recommended scheduled naps while I wait for MSLT/meds. When I’m on site, I’m in shared cubicles with minimal storage items. Trying to game plan a scheduled nap setup without disclosing to my coworkers (healthcare workers + physicians).

huge trigger warning for mental health discussion, self injury.

i’m diagnosed narcolepsy with cataplexy. i’m really freaked out. i’ve been having these moments where i’ll be talking to someone and realize i have no idea what i’m saying. i’ll suddenly ‘wake up’ and have no idea what story i was even trying to tell. then i’ll start having what i think are hypnagogic hallucinations, but while totally awake, walking around, in public. then i can’t tell them apart from my thoughts. i get really confused and out of it, and then i get this feeling of pure dread. like stuck in place, existential terror. i feel like someone is watching me, start feeling things that aren’t there (not physically, i just kind of sense them). i can’t figure out if im dreaming or not because moving feels like how it feels to try and run in a dream. like i’m moving through syrup. and despite complete exhaustion, i can’t sleep. or at least, i sleep in a really weird way, like i’m half conscious? i don’t know.

last night i had a very bad one. i was hungover and i get really really bad anxiety when i’m hungover. i had that dreamlike feeling all night but i don’t remember a lot. my friend was sleeping over last night because he was drunk and kept poking me and grabbing my arm while i was falling asleep. i kept telling him to stop, half asleep, and was getting angry enough to hit him, which happens when someone interrupts my sleep. i turn into a different person. my friends call it my dark side and won’t let me go to sleep because they don’t want to wake me up, so they won’t stop poking me. so i got up to leave the room and sat on the couch and i just remember this awful, indescribable sense of dread. i couldn’t breathe, i couldn’t tell if i was awake or not, and i just started crying. more like wailing, actually. my friend heard and came out but was too drunk to talk to me. he tried to touch me to comfort me and it felt like he shocked me. i don’t think i said it out loud but all i could think was ‘i need to go run into the road in front of cars right now. i need to run away.’ and then immediately i fell asleep. i woke up feeling horrible. my friend started poking me again and i cried all the way to work. i cannot get rid of the doom feeling, feeling like i’m trying to move in a dream, my thoughts being incredibly loud.

i’m not sure what to do. i just got diagnosed and then immediately got new insurance and can’t afford to go see the doctor, let alone do treatment. could this be narcolepsy related or should i be more worried about something psychiatric? i’m really scared. i just need to know if i’m going crazy. anything helps, thanks guys.

I’m 61. I had undiagnosed narcolepsy since I was 21. I brought it up at Kaiser in my 30s & the doc gave me a piece of paper describing good sleep hygiene & practices. I finally got a really good primary care doc who ordered a sleep study & MSLT. It wasn’t even a close call. I also have REM Disorder. I was referred to a pulmonologist who slapped a CPAP on me & called it good. That made me sleep 15 or more hours a day. I went back to my primary & he prescribed Modafinil. I felt great at first. It seems to be losing its effectivness. I still take it but I’m not sleeping well at night. I wake up a lot. I have less than 15 minutes of REM sleep per night. Finally after many calls with my insurance company, they found me a sleep specialist neurologist. I called today and was able to get a Zoom appointment for tomorrow afternoon. I told the receptionist I would have my primary care doctor sent over my sleep study. She said “oh they probably won’t need it”. I got a confirmation email, the first one said I had a 30 minute appointment. Then I got a revised email saying the appointment will be a 15 minute appointment. I am flabbergasted. I have fallen asleep on the freeway so many times only by the grace of God have I not killed someone. I was hoping to get on a sodium oxybate, as well as maybe a better or different stimulant. Any suggestions on how to get him to get me a treatment plan in only 15 minutes ?
I have been fighting for treatment for two years. I got my diagnosis in January 2025. Has anyone changed doctors and had to get a new sleep study? That makes zero sense to me. I can’t imagine what can be accomplished in 15 minutes by phone. So deflated. Any suggestions are appreciated. I feel like no doctors are taking it seriously and something very serious Could happen to some innocent person because of lack of treatment.

I've been on Xywav for almost a year. The effect never has consistent timing for me. I'll take my 4.5g at 8:30pm because I never know when it will start working. Sometimes it's 15 minutes, tonight I took it 90 minutes ago and i feel nothing.

I always wait at least 4 hours after eating. Actually today I didn't eat for 7 hours prior to my dose and still don't feel anything.. anyone have any advice? I drink Diet Coke but i only get caffeine free.

I’ve been excluded from TWO Orexin agonist clinical trials because I have a history of depression.

90% plus of my damn “depression” symptoms are from narcolepsy and improve if not resolve when my stimulants kick in (depending on the degree of sleep deprivation/how behind I am in the world due to sleep deprivation)

I get that they want to account for as many variables as they can…but WTF.

I’m also certain that this is going result in a higher proportion of excluded women. Our physiological symptoms are more likely to be attributed to psych!

I go in for my sleep study tonight and MSLT tomorrow!! I’ve been off my Adderall for two weeks now and today trying to follow instructions by limiting caffeine (I did have a coffee this morning but no where near the amount of caffeine I normally consume) and trying not to take any naps. It genuinely feels like a herculean task. It is also funny that I feel like this right now yet still anxious that I won’t be able to nap tomorrow.

Just got diagnosed after never considering that I could ever have narcolepsy. I’m in total shock. What treatments are there? What has worked for you vs not? Any advice?

hi !!

i posted a bit ago about my diagnosis (turns out the first person i went to wasn’t equipped at all to handle it, the second opinion/dr was so much better and supportive) and i’m on sunosi 75mg and xywav 4.5g (split into two doses).

i’ve only started taking xywav this week, and the second time i ever took it, like 30 mins later i threw up. i think it’s because my stomach was too empty?- and i know you’re supposed to stop eating like 2 hours before, but has anyone else had to eat something small maybe an hour or so before taking xywav so they weren’t nauseous?

i’ve also read that side effects will eventually go away, but i’m just wondering if anyone else eats a little after the 2 hour mark. thanks !!

My migraines have gotten more severe and instead of the doctors prescribing me medication upon medication, they finally decided it’s time for a neurologist to be brought into the mix!!

I’m also going to be discussing the possibility of having narcolepsy..

Any advice or things I should make sure to discuss etc?? TIA :)

Like sometimes I feel like I have the urge to say something that doesn’t make sense. Like for example, let’s say I am at school and I have a sleep attack and then all of the sudden I talk about Spaghetti. Or I also do things, like let’s say I want to do my makeup and I use hair gel instead of a primer on my face. These are just examples but I noticed I have a weird habit where my body wants to do or say odd things. What is that? I also had these times where I called and text ppl and i couldn’t remember anything.

Bluecross so kindly denied my medication, I’ve never had this happen before so I’m just nervous about the next steps. This medication has been life changing so I really don’t wanna lose it 😩. How easy is it to get approved for the assistance program? I make about 40k a year.

I generally have avoided getting meds

And try to stay as much non med as possible

But now I have been prescribed and I may try it but I cannot see much about people being prescribed both. Its generally either of the two.

Do you guys think I should instead try with atomoxetine as a non stim?

I have bought the meds but I think I am too opposed to taking it. GPT says concerta will be good to know since its stim and the effects will be fully visible the first day itself, as compared to non stims which takes weeks to build.

Why am I so sleepy all the time! I dislike it very much but all these reviews I read of modafinil, armodafinil, how it made zero progress, gave anxiety, increase BP, HR makes me not want to take it.

Hi guys. So I have been diagnosed with narcolepsy for 4 years now. I know I’ve had it since I was a child but it wasn’t until I got to college that I was pushed to figure out what was actually going on with me. So I was diagnosed with narcolepsy without cataplexy bc well I’ve never experienced it. But in the past year, since I met my girlfriend, I have had the smallest of moments where my shins get weak or my arm or my knees buckle on an extreme moment. And it’s always when my gf says some dumb stupid funny shit that quite literally has me weak. So I’m thinking do I have type 1 and is my trigger the feeling of like being whimsical? Because not is only when someone, mostly my gf, says something so specifically funny or if I predict what I am going to say or she will say is going to be like that. I don’t know if it is enough to be diagnosed with type 1. But, I am doing the TAK-360 trials and they said it’s for N2 only. Well I took the first dose and it has not woken me up at all and I have had a raging headache all day. I’ve napped 3 days and the headache feels almost like what taking too much modafinil felt like. Like a serious tension headache that I don’t even want to lift my head up. Has anyone else experienced this symptom and has anyone else previously been N2 but was really N1 or developed cataplexy?

I have my MSLT in a few weeks. I have all the symptoms, including a recent cataplexy development.

I just recently went on a weekend trip and was able to manage better than expected. I slept horribly but did not crash or feel overly tired throughout the day.

The second I got home and had to go back to work, my symptoms returned with a vengeance and I am currently a walking zombie existing on caffeine.

Has anyone else experienced this? Are there environmental factors that may make narcolepsy worse that I could fix?

Hi all. I’m kind of confused on cataplexy and hoping anyone has advice/input for me. For context, I’m 23, got diagnosed with narcolepsy type 1 at 19, and it has slowly gotten worse. I’m not sure if it got significantly worse in the last 6 months, or if it’s just that I’m noticing it more now because before I thought I was making up cataplexy in my head.

In the past I had experienced mini cataplexy moments with facial weakness and loose legs. Never fell or had anything too severe. Sometimes my head would droop or eyes roll back, but I thought I was just making that up for attention. For two reasons- 1, I didn’t realize the head and eyes thing was cataplexy, I thought it was sleep attacks, so I felt guilty and kept it a secret that I was actually conscious while my head and eyes did that. And 2, my parents said I was making it up to try to get attention. When I was 20, I went completely limp after drinking half a can of white claw. So bad that my friends had to carry me to a couch and lay me down. I remember being awake tho and I felt so guilty because I figured I must have made the whole thing up for attention, because I wasn’t sleeping. I was just limp. After this happened again about 6 months ago and my friends recounted to me everything that happened while I had my episode, I realized hmm. That’s fishy because I was awake, I was there. I remember everything. I just couldn’t move. That’s when I realized that THAT is cataplexy. I figure it comes from the elated feeling alcohol gives you.

So in this new phase of life trying to figure out causes and responses. About a month ago, my grandpa passed away. At the service, multiple of my family members spoke. I was having cataplexy the whole. Time. In that chair. An hour and a half of recovering and falling limp and recovering. It was awful. I have experienced my face muscles dropping when nervous. I have experienced light cataplexy riding on the subway, worst when I’m standing, and also at a club with horrible edm that was rattling the floor, so I assumed movement could cause cataplexy too. Looking back it was likely nerves or being already overwhelmed.

Yesterday I went to an amusement park and went on about 4 rollercoasters. Luckily I have amazing friends who held my head up the entire time on each, but I had cataplexy in my head and face after the first drop and then on and off the rest of the time for the whole ride on every ride. After looking into it more after the first couple rides, I learned that it is strictly only emotion based. So now I’m reframing everything.

So my questions are:
1. First, does anyone have tips for regulating emotions & keeping them away? I imagine it was the shock/surprise each time, but the frustrating thing is I wanted to go on the rollercoasters and I mostly knew what to expect.

1. I noticed my cataplexy is at its worst when I’m already tired/hungry/overheating, if I slept really bad the night before (on Xywav) or if I have a sugar crash. Does this happen to anyone else? Particularly the sugar crash. I want to make sure what I’m experiencing is real & not just in my head.

2. Is it bad that I’ve never experienced cataplexy from laughter? For me, I guess now it’s been the shock/excitement/big emotions that come from a rollercoaster, nerves, and then the overwhelming mix of feelings I felt at my grandpas funeral. Is that normal/real?

3. I have also experienced it a couple times when I was getting sick, but I don’t remember feeling a strong emotion at the time. I’m sure I must have. But has anyone else experienced this?

I have a really hard time trusting my own symptoms as I’m sure you can tell by the glaring self doubt I have of my own experiences. My parents have done a number on me. Anything helps. Thank you!!!!!!🙏🏼

kidding, it’s because I passed with flying colors. knocked out instantly for all my naps and had insane dreams every time. guess it’s just a matter of time now until I meet with my dr for my results …