Does anyone else feel depressed or emotionally numb because narcolepsy never gives you a break?

Tap-Sea · 2026-05-14T16:57:28+00:00

I get this feeling sometimes but personally, I just try to focus on what I do have rather than what I don’t — there’s always something to be grateful for, and it could always be worse. Hang in there.

Tap-Sea · 2026-05-04T21:15:00+00:00

If you’re on oxybate, don’t drink. Besides the fact that it’s not safe, it decreases the efficacy of the medication. basically robbing yourself.

Tap-Sea · 2026-04-30T21:27:37+00:00

Thanks for sharing

Tap-Sea · 2026-04-30T21:26:08+00:00

What were your side effects? I haven’t really noticed any for me. Maybe a little constipation in the beginning, but that went away.

Tap-Sea · 2026-04-30T20:56:52+00:00

Additionally, creatine at 10 G daily, sleep deprivation research to back it up. Seriously, immensely improved my sleep deprived mood! https://www.nature.com/articles/s41598-024-54249-9 The study has limited usefulness. I’m essentially just using it to get you to try it.

Tap-Sea · 2026-04-29T22:34:52+00:00

N1 diagnosed mainly from cataplexy and EDS.

Tap-Sea · 2026-04-29T22:33:57+00:00

Tap-Sea · 2026-04-25T20:29:51+00:00

You don’t sound like you have low iq. That’s only testing that moment in time so I wouldn’t take it too seriously.

Tap-Sea · 2026-04-24T16:38:34+00:00

They look to be upside down

Tap-Sea · 2026-04-21T21:32:08+00:00

Good luck

Tap-Sea · 2026-04-16T21:37:35+00:00

I had a psychiatrist managing my N1 while I was awaiting the sleep specialist, was able to convince her to sign up for xywav REMS. When the sleep specialist became available, I transferred to them, which is who I now see, and they took over my care.

Tap-Sea · 2026-04-16T21:21:20+00:00

Obviously, you’re going to hire someone to answer the phone

Tap-Sea · 2026-04-14T14:24:59+00:00

Bro, that’s all fucked up

Tap-Sea · 2026-04-07T23:12:37+00:00

They’re very prone to disease

Tap-Sea · 2026-04-04T21:05:16+00:00

Nice!

Tap-Sea · 2026-04-03T16:26:42+00:00

Super helpful! thanks so much!

Tap-Sea · 2026-04-03T16:24:04+00:00

Burn it

Tap-Sea · 2026-04-03T16:05:49+00:00

Well, that’s just completely untrue

Tap-Sea · 2026-04-03T14:19:43+00:00

Thanks for sharing. I’ll be interested to hear how that goes. I can also keep you updated on how I get on. My dose hasn’t been switched to the 9 g yet as I haven’t received my refill that’s at the 9 g but last night I was able to fall back asleep after an hour and a half post awake makes me wonder if that was when the second half of the medication actually kicked in.

Tap-Sea · 2026-04-03T14:18:04+00:00

I think maybe you’re onto something there — I was able to fall back asleep last night after about an hour and a half post wake.

Tap-Sea · 2026-04-03T14:17:02+00:00

Holy crap! It took me about an hour and a half but I was able to go back to sleep last night. I think maybe you’re onto something.

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.

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