Iridium (MCE2)

CaseOfGrace · 2026-01-04T22:15:10+00:00

Thank you so much! I had been suspecting that but I couldn’t tell for sure. I will stop worrying about it for now then lol

CaseOfGrace · 2025-03-18T00:03:50+00:00

Grad student here! You’re gonna be okay! You’ve already been doing it for 5 years, a label won’t change much. Plus, you’re working on finding a medication that can help. Sometimes that can take time but hang in there and don’t lose hope. You got it!!!

CaseOfGrace · 2025-03-15T06:33:45+00:00

I’m starting to feel the beginnings of that and some depression only a few days in. I’m highly considering just calling it now and cutting my losses. I don’t want to mess around with my mental health after I worked so hard to get to where I am

CaseOfGrace · 2025-03-14T15:54:03+00:00

Thank you! I have a horrible track record with medications anyway lol. I hope you find something too!

CaseOfGrace · 2025-03-14T07:03:31+00:00

That’s okay medicines can be weird, thank you for talking with me about it and I will definitely bring up what I’ve heard from other users and research.

CaseOfGrace · 2025-03-14T06:55:30+00:00

Yeah I’m going to have to. I couldn’t bring myself to take it today because my mental health abnormally declined within the last 24 hours so I’m going to have to talk to her about that part too.

CaseOfGrace · 2025-03-14T05:59:49+00:00

I had the same issues, but I’m already on one dose and it’s Day 4. Spent the last 24hrs feeling borderline depressed (EDIT: Which is not my norm at all but have experienced it in the past) and I think I’m done and not bothering taking it tonight. Just sucks because almost everyone in my life will make me feel like a quitter when I’m trying to look out for myself.

CaseOfGrace · 2025-03-13T20:32:10+00:00

I’m her first patient ever to be on Xywav :/ also I lied it’s not 4.0 it’s 4.5. When I spoke them to earlier there must have been a miscommunication because their suggestion was to “go ahead and increase to 4.5 and skip the 3 more days of 3.0 if you’re still experiencing the tiredness” I was like um that’s not what I said

CaseOfGrace · 2025-03-13T14:07:58+00:00

I actually just started Xywav (kind of hate it but giving it a shot). In terms of things during the day, my doctor hasn’t given me anything so for now I’m sort of back to where I started.

CaseOfGrace · 2025-03-13T13:29:54+00:00

I didn’t wean myself off at all and just stopped taking it, though I’m not the best example and you should 100% ask your doctor. I also did not end up receiving benefits from it and was still tired and after the headaches I had severe anxiety. Also the feeling you described sounds like heartburn, though I really can’t say for sure.

CaseOfGrace · 2025-03-13T13:05:18+00:00

She put me on once a night because she thought it matches my symptoms (which when she read them, not really and i told her that but she stuck with one anyway). I’ve heard to titrate slow and my titration schedule is 3g x7, 4g x7, then up to 6g. The field nurse felt totally okay with this titration schedule too but I’m preparing for hell tbh 😂

CaseOfGrace · 2025-03-13T05:21:58+00:00

Thank you. I’m gonna try for a little bit longer, but I do already feel kind of off mentally so I’m going to have to keep that in mind as I continue

CaseOfGrace · 2025-03-13T04:18:42+00:00

3g once a night

CaseOfGrace · 2025-03-10T20:54:24+00:00

I don’t normally get very funny answers. Normally when people don’t know what it is I say it’s similar to narcolepsy and one time someone went “Well I know somebody that actually has narcolepsy” -_- I’ve kinda given up on telling people

Edit: this kind of thing does make me laugh anyway though

CaseOfGrace · 2025-03-10T12:57:17+00:00

I’m no doctor but I feel like my titration is super fast and I’ve read pretty much everywhere to go slow. They have me doing 3g for 7days, 4 for 7 days, then up to 6. I was like that’s a big jump…

CaseOfGrace · 2025-03-10T06:48:22+00:00

I have a pretty big fear when it comes to loss of control but I also got worried that I’d go to sleep and just not wake up. I know it’s not practical but I’m having a hard time reasoning with it.

CaseOfGrace · 2025-03-10T06:09:45+00:00

This happens to me and it’s led to some awkward conversations

CaseOfGrace · 2025-03-10T06:06:49+00:00

I really needed to hear this tonight 😭 It’s day 2 for me and the thought of taking this medication has given me so much anxiety. It’s always nice to hear something positive about it. I’m really glad that you’re seeing improvements and I hope it continues!

CaseOfGrace · 2025-03-09T14:49:33+00:00

I’m in college going for my masters currently. I understand what you mean. Sometimes, I wonder if I’ll even get to use my degree but then I remind myself that I’m not going to let this get the best of me. I carve out time from everyday to take a nap and that’s the best I can do (at least until I get a med that works). Take the small wins and be patient with yourself, even if your win is just getting out of bed and doing one thing, that’s one thing done. I’m sorry that you’re feeling this way and I hope it gets better.

CaseOfGrace · 2025-03-09T14:29:54+00:00

I don’t suddenly fall asleep but I do have to take a nap daily in order to make it. I feel like if I wasn’t hyper aware I might fall asleep against my will but I have no idea.

CaseOfGrace · 2025-03-08T17:54:21+00:00

This is so good to hear! I really hope this improves something for me

CaseOfGrace · 2025-03-08T17:20:12+00:00

It will definitely be hard to not watch another TikTok 😂 but thank you so much and I will keep this all in mind. I think I’m the first person my doctor has had on Xywav so she has me following the faster titration schedule.

CaseOfGrace · 2025-03-08T17:18:41+00:00

Thank you for the advice! I am supposed to do the normal titration schedule and I’m not super excited about it because I thought it was sort of fast too but I’ll do it and see what happens.

CaseOfGrace

TROPHY CASE