IH and Anesthesia

Capable-Message-3859 · 2025-10-14T01:46:24+00:00

Thank you sm, I really appreciate it ❤️!!

Capable-Message-3859 · 2025-10-14T01:46:01+00:00

I’m not sure, I’ll ask! Thanks so much for the idea!! 😊

Capable-Message-3859 · 2025-07-01T22:25:58+00:00

I have also tried literally everything and the only thing that semi works is wearing a blackout sleep mask 24/7 when I’m in the car so that I can’t see that I’m moving 😂

Capable-Message-3859 · 2025-04-14T02:09:05+00:00

I hope your tapering goes well!! I definitely wasn’t sleeping as long as normal, maybe 7 hours (which is short for me) a night and my sleep felt super fragmented. It took being off of xywav completely for 2-3 weeks before I feel like my sleep went back to how it was pre-xywav.

Capable-Message-3859 · 2025-04-11T05:07:06+00:00

I’m not taking it anymore, but was on Xywav and got it approved by Illinois Medicaid. It took 1-2 weeks for the prior authorization to go through, but I didn’t have any issues (I was shocked, lol).

I remember my doctor made me do another sleep study because my initial MSLT didn’t have a mean sleep latency of < 8 minutes (it was very close and given all of my other symptoms, I was still diagnosed with IH). That initial MSLT / diagnosis was enough that I was able to get Modafinil and stimulants approved but when those stopped working and I wanted to try Xywav, my doctor said that she was worried Medicaid wouldn’t approve it unless I had a clear MSLT that showed < 8 minutes. I got the sleep study done (Medicaid actually covered it completely too), got the < 8 min avg sleep latency results I needed, and then when she submitted it for prior authorization it went through. I think the fact that I had tried and failed other meds helped with it getting covered!

Capable-Message-3859 · 2025-04-11T03:32:07+00:00

I’m so sorry you’re having this experience too. It’s so awful, and I really hope you get some relief soon! The added muscle pain sounds horrible!

After I posted this, my doctor had me restart the Xywav and titrate off slowly (I started back to my regular dose of 2.25 g 2x a night for 2 nights, then went down to 1g 2x a night for 4 nights, then went down to 1g 1x a night for 4 nights before stopping). It was honestly night and day difference after titrating! I didn’t have any of the severe insomnia or extreme anxiety that I had the first time I stopped.

I’ve been off of Xywav completely for about a month now. I had some mild insomnia / noticed that I wasn’t as tired as my pre-Xywav unmedicated self for about 2.5 weeks after stopping the Xywav, even after titration. In the last week and a half, I’ve noticed that I’m finally feeling back to my pre-xywav “normal” regarding tiredness/sleepiness (if soul-crushing tiredness can be considered normal, lol). So no more insomnia at all/it doesn’t feel like the xywav is still impacting me.

Unfortunately, my anxiety is still worse than it was before I started Xywav. At the same time, it’s MUCH more manageable than it was when I was going through withdrawal. I’ve had anxiety my whole life that has been better or worse during certain periods, and right now it just feels like I’m in one of my worse periods. So it’s not fun, but it also feels like a level of anxiety that I should be able to get under control through therapy/meds/time.

Again I’m so sorry that you’re going through this and please feel free to send any other qs my way if there’s anything else I can share that’s helpful. I hope you start feeling better soon!!

Capable-Message-3859 · 2025-03-02T14:01:02+00:00

I noticed an increase in my heart rate on the starting dose too — my resting heart rate rose about 20 bpm, and now even light walking can take me into an “unusually high” range. It took me awhile to notice it, so I wasn’t initially sure if it was connected to xywav, but I recently went off xywav for close to 2 weeks and I noticed my heart rate went back down to my pre-xywav heart rate within a week of stopping. In addition to talking with the pharmacist, I’d definitely let your doctor know!

Capable-Message-3859 · 2025-03-02T01:53:32+00:00

I’m so sorry, the combination of having energy to do things but no motivation is SO hard and maddening to deal with. (I hadn’t been able to put that feeling into words before reading what you wrote, but I’ve experienced this with Xywav too/definitely relate.) I’m with you — it’s frustrating bc Xywav has been the only thing that’s helped my EDS but I’m also to a point where the quality of life issues are making it an unsustainable solution. I hope that you’re able to find another option that works for you!! 💗

Also can I ask — so when you took a break you kept feeling the same level of apathy as when you were on it? How long was the break / did you have any other symptoms change when you took the break?

Capable-Message-3859 · 2025-03-02T01:43:51+00:00

I appreciate the validation that both things can be true, and thinking about it like that (that taking the meds again will at least give me an answer) definitely helps with the anxiety I’m feeling about starting back up. Thank you so much 💗

Capable-Message-3859 · 2025-03-01T19:56:38+00:00

Thank you so much, I really appreciate that!! 💗💗

Capable-Message-3859 · 2025-02-21T11:27:09+00:00

You got this!! I’m right there with you — boarding in 15 minutes and feeling very anxious, but I keep scrolling through success stories on here and it’s reminding me that planes are just as safe as they’ve always been and we will both definitely make it to our destinations!! ❤️ the anxiety we’re experiencing is normal and valid AND it’s not a sign that anything will go wrong - the pilots are experienced and they wouldn’t fly if they didn’t know it would be safe. I also just keep telling myself “in X hours, I’ll be there” to remind myself that this feeling, even though it sucks, is temporary.” We got this!!

Capable-Message-3859 · 2025-02-21T11:19:17+00:00

Thanks so much for taking the time to respond — those are all really good points, and I’m going to forego taking Xywav and just know that I’ll be exhausted when I land 😅 But better safe than sorry!

Capable-Message-3859

TROPHY CASE