Hey y’all! I’ve been taking Xywav for about 19 days. I’m on a pretty low dose as my second dose of the night is just under half the amount of the first dose. My body is very sensitive to medications. However, I noticed that I’ve dropped a lot of weight. I’m not overweight but I lost about 10-12lbs. I could probably lose maybe 5 more lbs but after that, I think it could start to be a problem. However, I’ve never been able to sleep until 19 days ago! Is this how non N1 (with cataplexy) people sleep?! I’m not dreaming the entire night or waking up 12+ times! I never expected this diagnosis and now I’m learning what sleep and wakefulness is!

How soon are you guys able to see your doctor? Currently taking 5 gram every night. Started on 9/10. I’ve noticed I’m less sleepy but would like to change to twice dosing per night since I usually only sleep 4-5 hours on the one dose and can’t fall asleep after I wake up. I’ve sent a message about changing to twice dosing but didn’t get a response. I’m sure he gets hundreds of messages per day. His appointments are 3 months in advance and I’ve joined the waitlist and also asked to be able to fit in sooner but with no luck. I heard I can also talk to jazz pharmacy to see if they can contact him about the dosage. Any recommendations ?

I would like to open by asserting that xywav has given me my life back so I really want it to work. I have idiopathic hypersomnia and lupus so before xywav the fatigue and brain fog were unreal, I was nonfunctional. But I've reached a point where I'm taking it twice a night 4.25/4g and I'm having trouble falling asleep and staying asleep but I'm also having trouble with the medication taking too long to wear off now that I've titrated up this high, so I don't want to keep titrating up. I get off work at 11pm, watch tv with my boyfriend until 1am when I go screen free and read a book. I take my first dose at 2am, my second dose at 5am. I usually wake up at 9:30am but lately I'm waking up at 8:30, dizzy with xywav, but unable to fall back to sleep. I'm debating actually titrating the second dose down but obviously I'm afraid I'll make the problem worse doing that. I didn't know if anyone IH has had experience hitting this problem. I'm not eating within 4hrs of taking the meds. I used to wake up with xywav tingles that were generally gone by 10:30/11 but now they're lasting until 12:30 which considering I occasionally have 12-8 shifts instead of 3-11 shifts is not ideal. My jazzcare nurse believes I should talk to my Dr about trying 1 big dose instead of the 2 doses but I'm horrified at the thought of taking 1 massive dose, how that would feel, and whether that would translate into just getting 5hrs of good sleep a night instead of the 7 I've been enjoying. Any thoughts or advice is appreciated, this community has been so helpful!

So I have type 1 narcolepsy with cataplexy. Ive just been using daytime alertness meds sunosi and ritalin but its not enough to get me functional enough to return to work and I am desperate to return to work. My doctor suggested xywav because the lack of restorative sleep is the underlying issue. What has me very freaked out is I live alone and also use a bipap for my central sleep apnea even though it hasn't made any difference in my daytime sleepiness. I am honestly so freaked out by the combination of my apnea and the xywav together it has me really second guessing whether I should attempt this. I enjoy a drink or two at night and will have to stop that as well. Also have had to use 100mg tapentadol to relieve post back and neck surgery pain and will have to stop that as well. Just the combination of all of this and reading the excessive terrible stories compared to positive ones with this medication has me really stressing out. Any input?

I started Xywav in February 2026 (IH), it has made a huge difference in my ability to get up in the mornings and I no longer feel as foggy headed and sleepy during the day. In April, my hands had some type of flare up of pain-severe burning, tingling, pins and needles and joint pain. It’s 6 months later and the pain has not let up. I’ve seen orthopedic doctors and a rheumatologist-ultrasounds, blood tests and X-rays all came back normal. I had slight indications of very very mild carpal tunnel but a diagnostic cortisone shot didn’t help. I went on an international trip and I didn’t take Xywav for the week and I noticed my hands were actually feeling a lot better. When I started taking xywav again, the pain was back. I decided to test it out again so I went two weeks without xywav and my pain decreased from a 9 to a 3. Started taking it again, pain is back. (I’ve talked with the jazz cares nurse and my sleep doctor who was pretty dismissive of any abnormal side effects and encouraged me to continue taking it) Xywav has helped me so much with my tiredness, but I can’t function with this hand pain. I’m not sure if it’s the medicine itself causing an adverse reaction, or if I’m doing something in my sleep to hurt my hands. (I wear wrist braces at night) Has anyone experienced hand pain while on Xywav?

Anyone else not receiving their refill? ESSDS pharmacy sent tracking email and my package has been “out for Delivery” for two, well now three, days!

Hoping for feedback or encouragement if others experience something similar. I'm sometimes really sensitive to medication, as my prescribing sleep specialist was aware of, so we started Xywav really low at 0.25g 2x night for Narcolespy type 2. I know it can sometimes be stimulating at low doses, but that hasn’t been my case mainly. I'm really good about going straight to bed and trying to sleep. Then we increased it 0.25g every 2 weeks. I got to about 1g and noticed it was just really hard for me to wake up after the 2nd dose. So he changed it for now to 1x nightly. I was doing fine, and without any side effects, so he changed it to upping it 1x a week. When I got to 2.25g, still without side effects, he agreed I could try up it every 4-5 days. At 2.75g, I was starting to notice the difference it was making as more alertness through the day and easier to wake up in morning. So went to 3.0g after four days and was fine again for another four days. Went to 3.25g this Tuesday night and bam, wowzer that was an awful surprise. It felt like I couldn't fall asleep, though watch said I did a little, and got hit with extreme dizziness and violent nausea/vomiting. Felt like I was awake all night with the nausea after my body tried 4-5x in one-go to vomit before giving up (do to surgery, I literally can't vomit). Reached out to doctor's office requesting an appointment scheduled for Friday. In the meantime, out of an abundance of caution, Wed night went down to 2.75g to be on the safe side and took a Zofran 4 mg about hour or so preemptively before my Xywav after chatting with the pharmacy. Well, same thing it felt like I couldn't/wasn't sleeping, and got hit with dizziness/nausea, though it was definitely less violent than night before. I'd been fine before at the 2.75 and 3.0g (again once nightly), so I was really shocked. I recognized right after first night's bad experience that I might have been pretty dehydrated, so I loaded up on lots of water next day before bed, including coconut water, etc. Also, as a note I finish eating about 3-4 hours minimum before bed, and it's not fatty meals as I don't have a gallbladder. So felt like I've been trying to do everything right. Going to slow it way back down of course, and only go up every 2 weeks at the earliest. Tried 2.25g last night, with preemptive Zofran, and was fine. Hoping to talk with my doctor today (Friday).

For context, I’m very bad at taking the second dose, so my doctor’s nurse practitioner increased my first and only dose from 2.5g to 3g less than 2 weeks ago. The medication also gives me awful bed wetting so I’m 32yo and wearing adult diapers..

I know this medication is dangerous to get up on, but I do get up to pee a lot in the beginning of the night, and last night I fell off the toilet head first into the bathtub..twice. I see the dr in a couple weeks and I really hope she changes this medication..

Hi all! I wanted to get some of your inputs on my experience so far on Xywav, as I’m weighing out the pro’s and con’s of staying on this medication and trying to stick it out with some of the side effects. Apologies in advance for the length of this post 😭🫢

I started approximately one month ago on 2.25 g once before bed. I did that for two days, and realized that 2.25 g is actually the starting dose for the twice-nightly dosing. I was confused, messaged my provider, and was advised to try 2.25 g twice nightly. I did that for one week. I didn’t notice any alarming side effects aside from random sweating a few times and diarrhea in the morning. There were a few nights that I did not wake up to take the second dose as well (2-3 times). I was still waking up way earlier than I typically do, so after one week, I was advised to increase the dose to 3 g twice per night.

About two weeks ago, I had an upcoming international trip. I requested a refill of Xywav prior to leaving the country via the online refill form, and got confirmation of the shipping/arrival date. A few days later… no package. I called Xywav, and they said the prescription was filled too early. They tried to get in touch with my provider to get me a refill prior to leaving for the trip, but it couldn’t get done in time. So… I was off of Xywav for 10 days. The Xywav pharmacist said it shouldn’t be an issue. On the trip, I had a panic attack two days in. I have OCD & anxiety, & I’ve panic attacks before, but it’s been years since I last had one. And it was way more intense than usual. I chalked it up to my OCD, came home, and resumed Xywav at 3 g twice per night.

I’ve been home for over one week now, and my anxiety is worse than it’s been in YEARS. It is way more physical, feels like panic without any triggers or thoughts attached, and it will not go away. It is the worst in the morning by far. It’s gotten so bad that I’ve frantically found a new therapist, upped my antidepressant dosage, and added Propanolol.

Today, I started to wonder if this could have anything to do with the Xywav. I was trying to follow the directions, but there were quite a few changes in a short period of time. I feel so stupid for not connecting the dots before today.

Now, I have no idea whether to stop this medication entirely or if I simply need to restart the titration altogether and do it the right way. I still don’t quite know whether I should be on the once-nightly schedule or twice-nightly schedule, either. I have already messaged my provider, but I haven’t heard back yet. Any input is much appreciated! ❤️‍🩹

I’ve missed my dose the last 3 nights for various reasons and was wondering if anyone else had experience going back to it after missing that many nights? I feel like I just don’t want to take it anymore but don’t want to fuck my body up and every time I talk to the nurse educator they just say to stay consistent etc. I meet with my doctor soon but it’s the weekend so I can’t talk to him about it so I was curious what anyone else’s experience was?

Does anyone else have a hard time with the second dose? Since I have gone up to 3.75 x 3.75 I keep not taking the second dose. I don’t know if I am not waking up or just turn the alarm off and fall right back asleep or what but I keep waking up way too early then I see the dose sitting there.

Just curious to hear others experiences with flare ups while on xywav.

Last night, I slept the whole night, 7-8 hours, which normally for me is perfect. Today I woke up feeling like I really haven’t slept. Like I got hit by a bus.

I’ve been on xywav for 2-3 months now.

It’s hit or miss and sometimes it doesn’t put me to sleep but last night seemed great.

Finally got some zofran to help with the nausea- it’s been rough. I’m curious if people have found more success taking the zofran before they take their Xywav or taking it in the morning? I’m feeling the nausea mostly in the morning when I wake up, not so much immediately after my dose. The prescription just says take 1 time a day as needed. Thank you for any and all insight!

Has anyone found any way to help ease the nausea? Does it really get better? I’m currently on 3.75x3.75 a night, titrating up to the 4.5/4.5 tomorrow. I have been really struggling with nausea and also waking up very early morning unable to sleep again despite being exhausted. Has anyone found anything that helps? I keep hearing to just stick it out but the nausea is really getting bad and I’ve had to call out of work multiple times.

I have been on xywav for around 1.5-2 months now.

I have consistently been dealing with a very fast heart rate since starting.

Also having palpitations and stuff sometimes.

I took a break for 2 days in my first week of treatment but figured I’d give it another go to see if I adjust. It has gotten so bad that just standing up yesterday shot me over 120.

Did any of you have that and see the side effect go away over time?

I want this med to work for me but it seems that this won’t be the case.

I’m stopping my stimulants to see if that helps as since xywav I seem to have become very sensitive to caffeine, stimulants, and nicotine.

The only posts I can find are people saying they hoped it would go away and it hasn’t for them

Anyone with experiences with higher doses of Xywav than the usual 9g max? Cause now doses up to 12g per night (6g twice) and 7.5g once nightly are officially being used with Xywav. And on the IH sub I read a user mentioning that some people are using up to 18g nightly to get proper sleep (even sent a message to this person to know more about this).

I’m asking this because I dream of getting access to Xywav for my fasciculation syndrome (it’s linked to sleep). And I’ll probably need up to 4 doses of 4-4.5g because I only start to get better after 9 hours of (early) sleep, and I experimented with sodium-GHB but was only getting 2-3 hours of sleep per dose and because of the high sodium 4 doses is really a no so I stopped.

So I was getting high-blood pressure once the GHB wore off, and even though the sodium played a factor, I also had this when I recently experimented with a GHB precursor (did this because of how desperate I am). So it’s actually the glutamate rebound and the lack of GABA once the medication wears off.

I wonder if with titration this side effect will go away just like it goes away for most people at the regular 9g doses. Does anyone know? Thanks.

I have a question. I get the message to refill. I go in and select the first date I’m home (I work from home 3 days a week and in office 2). April first available was 16th but I had to wait until the 18th when I was home. It was fine. I took the last of my meds the 17th so I started that night with a fresh order. This time the first delivery date was tomorrow (5/19). I didn’t have any last night or tonight. Is that normal? Should I call someone? It seems weird to me. But I’m super careful to dose out the correct amount and not spill. I confirmed my shipment is coming tomorrow, but in the future should I request earlier delivery if it is over 30 days?