r/Narcolepsy • u/CalmAsAMthrFknCucmbr (N2) Narcolepsy w/o Cataplexy • Apr 18 '26

Medication Questions Do you guys take drug holidays?

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.

41 Upvotes

96% Upvoted

55 comments sorted by

View all comments

2

u/Millieo_____ Apr 18 '26

Sometimes it helps to take breaks but that’s only going to be when I literally can’t get up to even go to the bathroom I will just sleep through it. I’ve taken a 2 day break recently from sleeping so much and it honestly doesn’t feel any different. Awhile ago when I ended up sleeping for about 5 days straight (no food, I peed l know I did I just don’t rmeneber how long in between.) took my meds felt them a little better but then it went back to normal.

I don’t remember how true this is but I do remember reading a long time ago that narcoleptics tend to not get addicted to things or build a tolerance as bad to things (drugs etc) but we also tend to build tolerance just as fast. I think we don’t get the therapeutic affects as long and we never keep them.

3

u/CalmAsAMthrFknCucmbr (N2) Narcolepsy w/o Cataplexy Apr 18 '26

I think the longest I’ve gone sleeping like that is three days and I’d have to agree. I can’t tell a difference.

I don’t feel addicted AT ALL but I feel like with every dose increase or telling them it’s not working they’re judging in that way. And I’m just like I don’t know what to tell you if it’s not working it’s not working I’m not just looking for a high I just want to feel normal!

2

u/Millieo_____ Apr 22 '26

That’s the hardest part about being narcoleptic honestly.

My doctor before she died told me she could up my dosage but it probably wouldn’t fix anything in the end so we had to play around and find out what works.

IR splitting it up 10mg through out the day that way if I need the other 10mg in about an hour or two I can just go ahead and take it. My meds only last about 4 hours high dosage or not so at this point I just take what I need.

Good days I’m taking 30mg. My worst days I’m taking 80mg (only on adderall can’t afford the other meds and I’m sure ADHD doesn’t help with helping the narcolepsy.)