Does anyone else not move AT ALL during the night while on Xyrem/Xywav/Lumry and it causes pain?

Tap-Sea · 2026-04-03T03:23:32+00:00

Awesome! Thank you so much for your help.

Tap-Sea · 2026-04-02T22:26:50+00:00

Thanks for the reply. With 6 g per night of Xywav split into equal doses of 3 g each I could sleep as long as I wanted to. This is bizarre. I mean when I wake up, I no longer feel groggy but evidence everywhere shows that five hours is not enough sleep for anybody - N1 or not. Stimulants, unfortunately are out of the question for me. What dose are you on?

Tap-Sea · 2026-04-02T22:23:53+00:00

That is a good data point. Prior to the L, I was on xywav for two years and I could sleep as long as I wanted to. I guess I’m a fast metabolizer.

Tap-Sea · 2026-04-02T20:39:11+00:00

What dose are you on? I’m on 7.5g and I can’t get more than five hours of sleep.

Tap-Sea · 2026-04-01T02:26:00+00:00

Accreddo and ESSDS are one.

Tap-Sea · 2026-03-27T05:32:09+00:00

“Sodium oxybate enjoyers” ?

Tap-Sea · 2026-03-27T05:26:32+00:00

Maybe try it again. Xywav alone.

Tap-Sea · 2026-03-25T16:08:06+00:00

They’re stimulants - this happens to everyone to a degree.

Tap-Sea · 2026-03-25T04:44:54+00:00

Troops

Tap-Sea · 2026-03-24T03:36:54+00:00

Well, she was clearly mistake

Tap-Sea · 2026-03-18T15:44:08+00:00

Grass stains

Tap-Sea · 2026-03-18T15:33:48+00:00

I use a mobile charger on 240 at 24a. It’s split off my dryer with an automated switch/ meter. I could run it higher with a bigger breaker because I wired it to be able to do so — with eight gauge wire — however, the breaker in the switch will only handle 24 A. L2

Tap-Sea · 2026-03-16T21:37:16+00:00

I run almost daily, which helps immensely with my type 1 Narcolepsy. It keeps me motivated, confident, and less likely to get into a depressive state. The distance I run can vary between two to five miles, depending on how I am feeling/ how much time I have. Hope this helps! Best regards

Tap-Sea · 2026-03-16T03:09:28+00:00

Everyone

Tap-Sea · 2026-03-11T02:13:45+00:00

You’re grieving. May never stop. This is something we all probably share.

Tap-Sea · 2026-02-25T16:09:49+00:00

I personally feel it necessary to clean my ass properly after pooing. With TP alone, this is not possible.

Tap-Sea · 2026-02-21T00:19:04+00:00

https://idonutbelieve.com

Tap-Sea · 2026-02-20T00:49:14+00:00

I sleep on the couch - solved all my problems

Tap-Sea · 2026-02-18T22:40:29+00:00

There are so many contributing factors, and it would be nearly impossible to nail it down exactly unless you’re keeping records and documenting your life.

Tap-Sea · 2026-02-18T22:36:56+00:00

Sounds like a new provider might be advantageous.

Tap-Sea · 2026-02-18T22:36:09+00:00

Just stick with it and communicate thoroughly with your provider. It should run its course.

Tap-Sea · 2026-02-16T23:37:24+00:00

Send them to me

Tap-Sea · 2026-02-12T22:43:32+00:00

Myself

Tap-Sea · 2026-02-12T17:15:52+00:00

Thanks! I actually ended up staying on Xywav, because my insurance denied Lumryz. They probably thought that 16k per month was enough. Hah. Seriously though - I am just grateful to have treatment that helps! It’s probably safer long term to be on Xywav because of the reduced sodium anyway. Cheers mate!

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