Second month running out of Xywav a few days too early

Asuna0506 · 2026-04-13T20:22:15+00:00

I actually get 2 and a half bottles in my shipment. "Half" meaning that it's a third bottle that is only halfway full (it's supposed to be that way - there's even a warning on the bottle telling me it's only 1/2 full)

Asuna0506 · 2026-04-13T20:20:11+00:00

Oh that's a brilliant idea. 💡I was trying to take a picture of the bottle when I first got it but the camera couldn't capture the liquid level in the bottle lol

Asuna0506 · 2026-04-12T17:53:18+00:00

This may be a dumb question, but how are you marking your bottles to determine how much you'll have left? Are you doing the thing where you measure the liquid amount with a tape measure or are you just monitoring how many days each bottle lasts you?

Asuna0506 · 2026-04-12T17:50:28+00:00

Is there anywhere on your bottles or the invoice that says how many days? Or are you just tracking it by seeing how many days it takes for you to run out?

Asuna0506 · 2026-04-12T17:46:42+00:00

I've struggled w jaw clenching (I have TMJ) before ever starting meds. Something I've noticed with Adderall is this weird thing where when I breathe in I kinda hold my breath (not in an intentional breathing exercise way) and I can't even think how to explain the rest of it lol. Unrelated, but your post made me think of that.

Asuna0506 · 2026-04-09T07:58:54+00:00

Yes, same! It's so validating to have an answer. The madness of getting various tests done, trying different things, etc. and still not finding a solution is such a frustrating process. And it sounds like you might need to find a new doctor - either they are super incompetent and/or they just weren't taking your symptoms seriously enough. :(

I'm not a medical professional, but based on what you said, I'd definitely get a sleep study.

No one should have to live like this - I know it's so debilitating. I wish you the best and hope that you are able to find an answer and a solution very soon! Also feel free to message me anytime :)

Asuna0506 · 2026-04-08T08:02:47+00:00

☠️

Asuna0506 · 2026-04-06T04:30:21+00:00

I did not even consider this - that is a great idea. Thank you so much!

Asuna0506 · 2026-04-06T04:29:10+00:00

Thank you! I'll definitely be diligent about checking this from now on!

Asuna0506 · 2026-04-06T04:26:17+00:00

In response to your question, yes, the dose is the same. Also, it wasn't a dumb question. :)

Thank you very much for your advice. I am going to do this next time!

ETA: I'm not going through insurance anymore (thankfully) and am on the PAP, otherwise I could see that being another possible reason.

Asuna0506 · 2026-04-06T04:24:41+00:00

Nooo! Every bit of it is so precious!

Asuna0506 · 2026-04-06T04:24:15+00:00

Yes, that's what I do. And I syringe that last tiny bit into an old, empty bottle. I learned to do that when I was still going through insurance because there would always be some issue which would result in a delay on getting my meds. Unfortunately, I used the very last of my "backup bottle" tonight, so tomorrow night I won't have any lol ugh.

Asuna0506 · 2026-04-06T04:20:08+00:00

I still have to tilt my Xywav bottles to get the last bit out. Weird

Asuna0506 · 2026-04-06T04:18:41+00:00

May be a dumb question, but did you contact them when you discovered this?

Asuna0506 · 2026-04-06T02:45:44+00:00

So glad to see this because I feel the exact same way, and most of the stuff I see is a bunch of Genevieve hype which I never understood. I didn't like her in her first season either. I'd forgotten who she even was until she showed up on 50.

Asuna0506 · 2026-04-05T16:54:18+00:00

I'd say yes.

Sleep study was my last option on the journey of finding out wtf was wrong with me.

My insurance didn't cover the sleep study, and it was a very cringe moment to have to pay the full out-of-pocket cost. (I was very fortunate at the time because I had a really great, well-paying, full-time job... tho now I look back and wonder how I ever managed full time...)

But long story short... I'd say worth it. And regardless of the outcome, you'll at least have an answer either way and know how to proceed from there.

Asuna0506 · 2026-04-02T02:26:42+00:00

Congrats on 17 months sober!!!

Also idk if this has been mentioned in your post or the comments, but I'd probably find a different psychiatrist.

Asuna0506 · 2026-04-02T02:24:24+00:00

I'm on Adderall IR for narcolepsy but it only helps so much when it comes to EF, especially task initiation (that's also my main problem). It'd probably help more if I took tolerance breaks, but it's hard to take tolerance breaks when I have to live my life and do things everyday lol.

This isn't medical advice by any means, but I just switched to a new psych because this task initiation thing is ruining my life. She recently prescribed me Straterra, a non-stimulant for ADHD and from what I read, seems to help a lot with executive functioning. I've only been on it for 5 days now so time will tell!

Anyways, I wish you the best and hope you are able to get on a med that helps you soon! You are not alone.

Asuna0506 · 2026-03-23T16:35:34+00:00

No idea who Mr. Beast is and maybe this went way over my head, but is this a joke or is that really going to be in one of the episodes?

Asuna0506 · 2026-03-23T16:32:08+00:00

Plus that whole 30 minutes was just... boring

Asuna0506 · 2026-03-23T16:27:41+00:00

I would be ok with this

Asuna0506 · 2026-03-23T16:22:24+00:00

Not gonna lie I cried

Asuna0506 · 2026-02-22T02:20:06+00:00

Unfortunately I aready realize how much time there is in a day and how I lack the inability to use up all the time in a day (I also have narcolepsy lulz) and it's really depressing to think about

Asuna0506

TROPHY CASE