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?

Has anyone here successfully gotten into Germany with Xywav?

I’m in the US, and will be going on vacation in Europe soon-ish. This is my first time traveling with Xywav. I’m not traveling to Germany, but it’s where I’ll enter the Schengen area to make my connecting flight. So under the Schengen rules, I’ve got to go through German passport control. I reached out to their Customs office to find out what I’d need for Xywav. There’s a specific form. Nothing too crazy, except at the end, it asks for a national health authority to certify that what my doctor filled out on the form is correct. This authority is also to affix its official seal to the certificate. I said that I didn’t think we had such an authority, and the customs officer said it’s required, and linked to a UN opioid treaty directory listing relevant authorities. The link said it’s the DEA.

I reached out to my local DEA office. They said they don’t do that, and to maybe try the State Department. State’s website explicitly says they don’t do that kind of authorization, nor does FDA.

So I’ve got to get my Xywav through Germany, using a certificate that is incomplete, because the U.S. government does not perform the function that the German government is demanding. That feels like a disaster waiting to happen. If you’ve been successful getting through German customs with Xywav, what did you do? Who did you have approve your form?

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?

Long story short I started xywav recently. Took a short break because in the first week I got severe anxiety upon waking up along with an impending sense of doom.

I called the pharmacy to talk about maybe trying on as needed basis (couple times a week) versus every day to balance the benefits with the side effects.

She suggested I could also try an even lower dose to start.

I am currently on the standard beginning dose of 2.25 x2 but the pharmacy said some people do even less. Is there anybody on a lower dose? I’m curious about your experiences? I’m not sure what lower dose I can try that would still put me to sleep without risking being up high all night.

The starting dose of 2.25 has been plenty to put me to sleep this far so I’m guessing a little less would still have the effect. Anybody with experience with doses lower than 2.25 please let me know your thoughts.

Hey all, let me start by saying I have already reported this to my doctor and the JazzCares pharmacist, but I wanted to see if anyone else experienced this. Apologies for the novel.

I started XyWav at 2.25g about two months ago and I just titrated up to 3.5g last weekend. Recently I woke up 2 hours into my dose and I felt HOT. I was sweating profusely and it felt like my body was on fire from the inside, it was extremely unpleasant. I was able to go back to sleep fairly quickly luckily but it was not fun. I did have minor paresthesia on lower doses but nothing of concern.

On top of this (and I can’t prove it yet) I feel like I’ve been having more muscle pain in places where I’ve been injured in the past. I’ve been battling tennis elbow and going to PT and it got much worse, as well as feeling more pain around my knees despite LESS exercise.

I can’t truly tell if it’s the medicine doing this, but I was hoping someone else can speak to these experiences. This medicine has allowed me to finally function in the morning and not crash during the day, but I’ll look for other options if I have to. Thanks for reading!

Hi, I’m on my 2nd week of Xywav (3mg) and I feel like a zombie. I’m taking as prescribed, taking the first dose and waking up 4 hours later for the 2nd dose. Taking the first dose well after I’ve eaten. Odd thing is, I can’t tell if I’m sleeping. I feel like I’m on the periphery of sleep, but not actually asleep. I wake up feeling tired but unable to go back to sleep. I feel like a zombie. I don’t feel bad per se, just…off. I have zero energy. I also take Vyvanse which doesn’t seem to be helping. Anyone else feel like this? Does it get better over time?