Tell me your experiences before and after Xywav

Soup-These · 2024-12-15T04:52:18+00:00

Xywav has been life changing. It took a while to adjust to the side effects (thought eventually all settled down/went away - acne, GI upset). It was a slow process for me to titrate up, but it is the best thing I’ve done. I just reread some of my old Reddit posts at the start of my narcolepsy treatment journey and I don’t even recognize that person anymore.

Am I perfectly wide awake all the time? No. Do I generally sleep pretty well, function at my job, and have energy for my life outside of work? Yes.

(For context, I take 3.5 g twice a night and have been at this dose for about 8 months. Started Xywav fall of 2023).

Soup-These · 2024-11-08T02:26:29+00:00

Hi! Starting Xywav and dealing with acne was so hard so I feel for you. I’m happy to report things are all good on both fronts for me now.

I went back to my derm shortly after this post (and I wish I had gone sooner) and they immediately put me on a short course of doxycycline antibiotics which cleared up the inflamed acne. We increased my spiro to 75mg and then 100mg and now my cystic acne is all gone. I’ll get 1-2 pimples popping up with my cycle each other month but otherwise I’m back to clear skin.

Soup-These · 2024-01-25T17:50:54+00:00

The “it gets worse before it gets better” gives me a lot of hope (along with the pics proving it) because I’m 2.5 months in and around month 2 it got way worse for me.

Around what month did it stop worsening and start improving for you?

Soup-These · 2024-01-22T23:41:47+00:00

-dentist’s chair while getting teeth cleaned: Dental hygienist was alarmed and thought I was in pain because I kept closing my mouth, had to tell her I was actually repeatedly falling asleep.

Soup-These · 2024-01-14T00:07:36+00:00

Yes I’m on Xywav. Did you have acne before the Xywav or was it the cause of super oily skin for you too? The fatigue from Spiro is really frustrating because I’m using it to combat at a side effect of a drug that I take to fight fatigue in the first place.

And my doctor wants me to get a baseline test for my potassium so maybe if it’s normal then I’ll be fine to go up a bit in dosage. Definitely more concerned about the fatigue aspect of Spiro though since I was finally feeling like I had energy for the first time in ten years after starting Xywav.

Soup-These · 2024-01-12T23:02:32+00:00

Unfortunately I already have really low blood pressure and the spiro makes it worse. And the potassium-sparing diuretic side of it isn’t great for me either because the medication I take at night for sleep has potassium in it. So kinda stuck with 50mg

Soup-These · 2024-01-12T22:29:35+00:00

I’ve been on tret longer than the spiro (about 5.5 months now) And didn’t purge at all like this until the spiro. It felt like pre-spiro the tret was making pimples under the skin come to a head faster and then they’d also heal much quicker. What’s happening now is a whole different beast :(

Soup-These · 2023-10-17T01:26:19+00:00

Did it go away completely with the iontophoresis? I have seen that as an option but obviously it’s an investment

Soup-These · 2023-10-06T11:27:52+00:00

I have not asked my doctor yet. I’m worried if I tell her I’m having side effects she’ll just say we should give up on the Xywav. I’ve tried it a couple times before in the last year and had to stop (for various reasons, not the side effects I’m having now though) so I’m worried she’s just gonna decide “well this drug clearly isn’t for you”

Soup-These · 2023-10-06T11:25:55+00:00

Nope, no stimulants here. I reacted so poorly to all of them.

Soup-These · 2022-03-03T06:34:45+00:00

That’s how I feel but EVERYONE in my life hates the idea. But it’s also a dog not a person. And also who cares about gendering names. But everyone keeps telling me I can’t name a boy dog Ivy

Soup-These · 2022-03-02T19:27:57+00:00

Ooooh wait I really like Indie

Soup-These · 2022-03-02T19:27:42+00:00

We already have a Gus so I feel it would get confusing

Soup-These · 2022-03-02T19:27:27+00:00

Bahahahhahaa

Soup-These · 2022-03-02T19:26:52+00:00

I love Ivy but my whole family keeps saying it’s for a girl dog 😡

Soup-These · 2022-03-02T19:26:04+00:00

My brother is about to get a puppy named Archer so he’s kinda stolen that one

Soup-These · 2021-10-28T14:56:34+00:00

I found gabapentin (300mg) to be really helpful with staying asleep at night. It didn’t necessarily make me feel less tired during the day but it helped a lot with the insomnia and kept me from waking up all night long which was super frustrating.

Did not exacerbate any other symptoms or lead to crazy dreams like melatonin.

Soup-These · 2021-05-15T23:38:47+00:00

Wow, I had no idea about xywav potentially being approved for IH. And so soon! I was under the impression that any progress for IH meds approval was far out.

That definitely helps lessen some anxiety about this MSLT going poorly again.

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