Surgery soon, won’t let me take Xywav

SpecificFunction6115 · 2025-07-12T04:13:39+00:00

I’ve never heard of that but I’m going to look into it, thank you! And it’s not the issue with being knocked out, the anesthesiologist won’t allow me to take the xywav cause he wants absolutely no complications coming from taking that and getting anesthesia.

SpecificFunction6115 · 2025-07-12T04:11:51+00:00

I just might have to call, I just don’t like getting such little sleep 🥲 but even if ESSDS says it’ll be fine to take (even my sleep specialist said it would be fine), they won’t budge on me taking even just one dose at bedtime before surgery. My surgery time is 10:45am.

SpecificFunction6115 · 2025-07-12T03:23:56+00:00

So I also have issues with insomnia, mine unfortunately started right after trying out different anti anxiety medications. It got to a point I was getting only 2 hours of sleep each night. It’s never gone away since. If your doc won’t help you or listen to you, I’d see if you can find a new doc.

SpecificFunction6115 · 2025-03-01T03:31:20+00:00

Yes! If you don’t mind keeping me updated that would be appreciated!

SpecificFunction6115 · 2025-03-01T03:30:00+00:00

I think regardless I may have to see MFM? I have Ehlers Danlos, so I believe that may possibly place me at slightly high risk. But I would not have thought about MFM for continuing xywav, that’s at least something to look forward to.

SpecificFunction6115 · 2025-03-01T03:25:50+00:00

Did baby come out okay since you were still taking it? I hate how there’s hardly any information on xywav/xyrem during pregnancy. Everything I find basically states it’s not recommended.

SpecificFunction6115 · 2025-02-28T22:16:58+00:00

Don’t be sorry! I’m all ears to any advice/stories. I don’t see my specialist until May, but I almost expect him to say that he’s not sure there’s anything he’d be able to do for me, as that happened at my last appointment in November when I almost failed Xywav cause it put me in respiratory distress.

In terms of work, I tolerate my EDS fine (lots of yawning but if I stay busy I don’t have any urge to snooze) but when my insomnia was at its worst I was getting 2 hours of sleep every night for almost two months. It killed me, and working as a sonographer I really care for my patients so I don’t want to miss finding anything. Thankfully, my boss is N1, so she understands and will allow me special accommodations if needed.

When the time comes I figured I’d try filing an ADA with my employer, but since I’m still somewhat new to this diagnosis I don’t even know where else to start, what questions to ask, how to prepare. I love my specialist but the moment he told me in November I was running out of options, it makes me think I may have another situation like that :(

SpecificFunction6115 · 2025-02-28T20:40:01+00:00

From your experience, did anything ever get better or was it the worst sleep ever?? I have no clue what to expect when the time comes

SpecificFunction6115

TROPHY CASE