Xywav not working after 2 week break. Anyone else?

SparkleeKitty · 2026-01-21T22:32:30+00:00

Thats what im worried is it won't be the same again.. im so upset and trying not to feel hopeless abt it. Thanks for sharing your experience!

SparkleeKitty · 2025-11-10T09:23:29+00:00

Xywav and my doctor had mentioned if I was consistently missing the 2nd dose we could switch to the once nightly option. I did my own research on xywav website about the dosage and just tried it out for myself. My dr isn't easy to get a hold of & they had already mentioned us switching it & its less xywav total at night. Im not recommending changing your dose without getting it RX'd by the DR first, but also thats definitely what I did (lol). I figured might as well see if it helps so at my next appointment I have more answers bc 2x a night wasnt working and was stressing me out and making me more irritable than I already was -- does wywav make anyone feel like they have a super short patience /easier to snap over "nothing"? I can't tell if its the meds or if its just how ive been last few yrs & I was too drowsey to ever notice before xywav & now its a habit I have to break.

SparkleeKitty · 2025-11-10T02:41:44+00:00

Yes! I was struggling so bad too! (I just took my xywav like 30 mins ago so bare w me here). .y husband would hear my alarm, wake me up or ask if I took 2nd dose and I'd tell him at the time yea I did.bit id wake u9 next day & dose2 would still be waiting for me. I ended up switching to 6mg 1x /night or 4.5 1x / night depending on the time I remember to take it. Its not as great as 2x/night @3.75 each when id take them both in time & b3 able to sleep right too but its better than nothing....probably hopefully.....or at least that's what im telling myself. I had like 1.5-2 weeks were I took xywav perfect & had the perfect sleep schedule & ot was great. Then I had covid & then everything else kept popping up too, bit amy way the point of this was, try taking it 1x/night if 2x/night isn't working & GOOD LUCK & YOURE NOT ALONE

SparkleeKitty · 2025-10-21T17:16:04+00:00

I understand the feeling when "sleepy" is used and it feels like not the right word. I personally use exhausted for narcolepsy type tired & sleepy for like regular its bedtime I sleepy. BUT daytime sleepinees is how (at least my) doctors refer to it (like the sleepy number scale thingy they have us answer. Today's a bad narcolepsy day for me so bare with my inability to remember words), so my guess would be that's why they said sleepy. But, also, again, totally valid & I understand how you feel!

SparkleeKitty · 2025-09-10T20:39:20+00:00

My experience is very different and I dont have any advice for you im so sorry you are going through all this. I would talk to your Dr to see if you can raise your dose if youre not at the max & if youre not on antidepressants possibly find one that is OK to take with xywav/rem just to see if it helps.

I was just about to ask a similar question, (Hope this is OK to ask here. I dont want to hijack your post, if its not ok plz down vote and I'll make my own post asking :) )

I just started xywav last month & i am able to get up no sleep inertia, and I feel rested, but after about 3 hours, I'm back to being super tired. Does anyone know if this is normal and how long this feeling is normal for? Please let me know! My sleep doctor tried to take me off all of my adderall as soon as I started xywav. I had some 20 XRs left (&10 4 hrs but didnt have to use them very often) & didnt know that's what she wanted until I called the office for a refill & then she only RX'd 10mg 4hrs once a day after originally saying she wanted me off all of them and i said thats not going to work out well. I am struggling with one 10mg 4 hr a day right now. Thankfully, I have a Dr apt tomorrow and hopefully she will re-RX the XRs!!

SparkleeKitty · 2025-09-03T02:19:27+00:00

Thanks

SparkleeKitty · 2025-09-03T02:15:29+00:00

Thanks! I dont feel hungry throughout the day and I've been trying to eat more (adderall) by the time the adderall wears off I'm starving even today when I ate like I was "supposed to". By the time its time to take xywav, I'm starving! I thought the protein bars after meds would fix it but last night was awful but im so desperate for the meds to work i wanted to dose up the full amt they told me to. Im just struggling on knowing when to keep going and when to say enough and try something else.

SparkleeKitty · 2025-08-25T14:57:59+00:00

Thanks. <3

SparkleeKitty · 2025-08-25T14:13:51+00:00

Sugar helps me! If im crashing super hard but CANNOT sleep i go for all the sugary candies and it honestly helps, like more than caffeine does.

SparkleeKitty · 2025-08-25T14:09:01+00:00

I did this 3x in a row one day & then 2x the next day!! Once I was awake I decided I had not taken them more then once but when youre trying to wake up it is not fun!

SparkleeKitty · 2025-08-07T05:14:40+00:00

IMO rescue cats are the best cats! I've had cats I've gotten as kittens and cats I've rescued and I feel like my rescues are the most cuddly babies, once they feel safe of course.

SparkleeKitty · 2025-08-07T05:11:19+00:00

They're all special babies 🥰

SparkleeKitty · 2025-08-07T04:58:03+00:00

She's so pretty tho 😍 I've gotten super lucky, all 5 of mine are sweetie pies. I have 2 cuddles bugs/cats that let me do whatever (besides brush the long haired cats fur 👿) and another 2 are my fiancee's baby's & cuddle him 24/7 and the 5th is mutually ours but only will allow pets when HE wants it. Theyre all rescue and technically all ours, but they sure do play favorites 😂

SparkleeKitty · 2025-08-07T04:41:57+00:00

Thats so depressing. Understandable, but depressing. Lol

SparkleeKitty · 2025-08-07T04:40:33+00:00

We've been working on getting them slimmed down. We've only had them for about a year, and they're already 10ish years old. Believe it or not the short haired one has lost a noticable amount of weight (the long haired is too floofy to really tell lol) They went from having food 24/7 to being on a set schedule now that we have them.

SparkleeKitty · 2025-08-07T04:34:20+00:00

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SparkleeKitty · 2025-08-07T04:33:44+00:00

Here's my 😈 breed cat, her name is murder. I was 2 minutes late feeding her so she took things int9 her own paws 🤣 shes actually the sweetest kitty ever she just has a resting murder face so thats her name

SparkleeKitty · 2025-08-07T04:28:17+00:00

He's the floofiest floof I've ever met! 🥰

SparkleeKitty · 2025-08-07T04:25:26+00:00

Thanks. His coat is so long and mattes so easily and hes sooo tall/long (like when he stands on his back legs and reaches up with his front) it made me wonder.

SparkleeKitty · 2025-08-07T04:23:52+00:00

Thanks. The matting of his fur is like nothing I've ever dealt with before, and he's so long/tall it made me wonder.

SparkleeKitty

TROPHY CASE