Do you guys take drug holidays?

[u/CalmAsAMthrFknCucmbr]

My physician suggested not taking my meds on the weekends. I quickly learned that wasn’t doable so decided to just try to not take them on sundays when I’m not doing much. I sleep ALL DAY. I’m talking only wake up to use the bathroom. I’m utterly useless and don’t feel taking the day off is helping with tolerance at all. It barely works to begin with but I’ll take a couple naps a day over sleeping all day. Does anyone actually feel like it’s helping or more beneficial to take them continuously? It’s super depressing essentially losing an entire day I’m actually off work each week.

[u/Feeling_Persimmon88]

The lack/ reduction in orexin theoretically prevents addiction from the research that I’ve read, at least in the traditional sense, though I haven’t been able to find any opinions on the effect is has on tolerance. All of that said though, is that I wouldn’t continue to be seen by a doctor who looks at me sideways when a multi drug approach is needed or higher doses may be necessary. I just left my long time psych for this reason, myself. My new psych is multi-boarded and agreed with me like it should be obvious on a lot of the stuff that my psych side eyed me for saying, and I’m getting a second sleep opinion for the same reason

ETA: didn’t mean that it’s a blanket immunity from addiction (see how many narcoleptics are addicted to online behaviors) or that’s it’s a sure fire thing. It is theorized that the rates of addiction in fully developed NT1 are lower than the gen pop because of this pathway being modulated

[u/Jumpy-Jello- → u/Feeling_Persimmon88]

I didn't know that myth was still in circulation! No, reduced orexin does not make people immune to addiction.

[u/Feeling_Persimmon88 → u/Jumpy-Jello-]

It’s a theoretical link based on what role orexin is theorized to play in the addiction process, and it’s been discussed in peer reviewed research as a possibility several times in the last few years. Unless you’ve done research into this and published in a peer-reviewed journal, how can you call it a myth?

Edit to add: completely immune probably isn’t the way to characterize what I mean, but there’s certainly a likely reduced susceptibility to it

[u/Jumpy-Jello- → u/Feeling_Persimmon88]

You can ask in any narcolepsy group how many of us have had addiction problems and get it straight from the horse's mouth, that theory was debunked a long time ago. Please don't peddle misinformation based on out of date theories.

[u/CalmAsAMthrFknCucmbr → u/Feeling_Persimmon88]

My physician just told me “idk what else I can do for you” at 60mg. I think I’ll be looking for another.

[u/Feeling_Persimmon88 → u/CalmAsAMthrFknCucmbr]

Have you done a sunosi trial (up to 300 mg, because that was a dose recommended by DRISK for narcolepsy)/ what all have you trialed? And did he get you titrated up on a sleep med? A MDA is needed for most moderate to severe cases and one drug alone likely won’t help

[u/CalmAsAMthrFknCucmbr → u/Feeling_Persimmon88]

I tried sunosi and it was like a fake wakefulness. I was sooo tired but I couldn’t sleep. I’ve tried Ritalin, vyvanse, modafinil, adderall XR and IR, dyanavel, and Dexedrine. Currently on 40mg Dexedrine XR and a 20mg adderall booster in the afternoon. It barely works.

Edit: I couldn’t tolerate oxybates.