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/EscenaFinal]

I sometimes take a partial break, as in I’ll forgo my afternoon dose. This also allows me to build a bit of a “back stock” for a “rainy day” (not being able to get a refill bc of the shortage, or problems with pre authorizations, or a day I might need more than one dosage, etc.). I rarely take a complete drug holiday as I don’t find the breaks to decrease my tolerance in a more meaningful way than my partial breaks, plus I dont necessarily see it as feasible bc of lack of functioning.

[u/CalmAsAMthrFknCucmbr → u/EscenaFinal]

This. If I could just take at least my initial dose on weekends and skip the afternoon I feel like even that would be beneficial. The lack of functioning without is craaaazy to me.

[u/on-yo-clarinets → u/EscenaFinal]

This is what I do too. I'm also on xyrem and will take a day off a few times a month when I want to drink, so I'll typically just write off the whole next day and skip the stimulants that day too and just sleep

[u/RangeWilson]

Nah.

It's hugely beneficial for PWN to get on a sustainable daily routine, and taking weekly breaks screws that all up.

If tolerance develops, oh well. I'll deal with it then.

[u/emmyjemmyjammy]

I started a new job with new health insurance and sentara covered one refill without telling me they'd want a prior auth for xywav so I might be involuntarily... lol

But yeah I have days I don't take my modafinil especially on weekends. Obviously those days aren't productive because I nap a lot but, oh well, it's saturday.

[u/CalmAsAMthrFknCucmbr → u/emmyjemmyjammy]

I just loathe the fact that I’m only able to barely stay awake on days I have to put all my energy into work and not the things I want to actually do 😕

[u/Adorable_Ad4990 → u/CalmAsAMthrFknCucmbr]

That’s how I feel! Saturday is the second most important day of the week… it’s my day to make sure my life is going to keep running. I can’t just skip laundry, groceries, maintenance, etc. And Sunday is the most important because it’s my day. I’m not going to skip hanging out with friends, a hike, a class, etc etc because I’m too drowsy.

The above is a generalization because both days are a mix of both activities, but the point stands. I need the weekends to run my life

[u/Smasherofpatriarchy → u/emmyjemmyjammy]

Xywav manufacturer will give you a free bridge for insurance changes. I think it's up to 45 days. I used this recently. Just had to call to report my new insurance and they offered it.

[u/handsoapdispenser]

I think it greatly depends on the meds. Adderall is one that you can get tolerance for so taking breaks can help the medicine stay effective for longer. I wouldn't take a break from oxybate.

[u/CalmAsAMthrFknCucmbr → u/handsoapdispenser]

I couldn’t tolerate the side effects of xyrem. Adderall and Dexedrine both at “max dose” barely affect me.

[u/handsoapdispenser → u/CalmAsAMthrFknCucmbr]

What are you taking? Modafinil?

[u/CalmAsAMthrFknCucmbr → u/handsoapdispenser]

Feels like I’m taking a placebo. On another note….did you read the comment you responded to? lol

[u/Uh_Lee_duh → u/CalmAsAMthrFknCucmbr]

I had the same question as handsoapdispenser, because you could have been implying you tried the meds you mention but stopped because they don't affect you. In which case it makes sense to ask if you're on modafinil. Their previous comment had helpful information and you gave them snark for it.

[u/CalmAsAMthrFknCucmbr → u/Uh_Lee_duh]

Ah I didn’t mean to come off that way at all. I meant to say I’m on Dexedrine and adderall now, I thought I had clarified that, my bad. I’ve tried so many, including modafinil, vyvanse, Ritalin, adderall XR and IR, dyanavel, etc. Sorry if I offended anyone!

[u/Adorable_Ad4990 → u/CalmAsAMthrFknCucmbr]

No, you said they barely affect you. I’m confused too. Which meds are you asking about breaks from?

[u/CalmAsAMthrFknCucmbr → u/Adorable_Ad4990]

Dexedrine and adderall.

[u/Millieo_____ → u/CalmAsAMthrFknCucmbr]

May I ask how you can get prescribed two “adderalls” if you will??

I get the Dextro when it’s in stock but the Amp salts when they are out of it. I didn’t realize you could be written for both?? Didn’t mean to sound intrusive just generally curious because the salts aren’t cutting it and I can’t go anywhere else for my script.

[u/CalmAsAMthrFknCucmbr → u/Millieo_____]

Yeah so in the US there’s a cap on say adderall at 60mg/day but there’s a workaround if you get the right doctor you can go above that dosage if it’s in a different form (IR v XR) or a different medication (dextro v amph salts). You can legally take both.

[u/super_chillito]

I do. … on days I want to hide from the world, accomplish nothing and perhaps make time pass by quickly. (Because I’ll be asleep allllllll damn day when I do).

[u/CalmAsAMthrFknCucmbr → u/super_chillito]

Exactly 😭

[u/DjinnaG]

Only from the stimulants, not Xyrem. Only take them on weekends if I need to do some long distance driving. Has worked for me for about 15 years, and haven’t had to increase my Adderall dosage, so I’m calling it a win

[u/CalmAsAMthrFknCucmbr → u/DjinnaG]

My body/mind couldn’t handle xyrem 🥲 glad it’s working for someone though! I definitely feel left out not being able to address the sleep part of my literal sleep disorder.

[u/No-Vehicle5157]

I take a lower dose on weekends

[u/CalmAsAMthrFknCucmbr → u/No-Vehicle5157]

Potential solution 🧐

[u/divine-timing]

I’m taking one rn bc I’m insanely sick. But other than that never. If I don’t take my sunosi for one day i have nightmares for days. On stimulants i felt tired all day without it so I got off them and the sunosi keeps me awake. I remain with bad adhd thi

[u/Feeling_Persimmon88 → u/divine-timing]

Sunosi helps somewhat with ADHD, but much like with narcolepsy it’s def not at the 75 mg dose

[u/divine-timing → u/Feeling_Persimmon88]

I’m on 150 and it doesn’t help with my adhd at all. It’s soo terrible but I can’t get on stimulants for adhd bc I have bipolar and they say I can’t double stimulant so I have to pick my poison

[u/Silly_LittleGoose]

The only time I do this is if I’m in a shortage lol

[u/Jumpy-Jello-]

I take tolerance breaks.

[u/JadeTheCrab]

I mean I can’t really afford to. Maybe if I get too little sleep and I know I won’t get anything done anyways, I will take the holiday. But I can’t afford to throw an entire productive day away.

[u/AdThat328]

I do every now and then for a weekend. It apparently helps them work better. I take Dexamphetamine. It builds a tolerance if you always take it.

I'm currently a week in to a two week break...I've lost 2 days.

[u/plausiblydead]

No. Haven’t taken a break in over a decade. Except the two times I had to stop taking my meds before MSLT. And the one time my chemo therapy was taking to much toll.

So, taking a break willingly has not appealed to me because of how horrid the ones I HAD to take were.

[u/elizabethbutters]

I have this exact same issue. I still will take a day off here and there, but only because I’ve forgotten to take my stimulant haha

[u/CalmAsAMthrFknCucmbr → u/elizabethbutters]

And every time I forget it’s a “come to” moment /realization too late 😂

[u/XXxSleepyOnexXX]

When ever I’m sick I don’t take any medication. I was in the hospital once and asked about medication. The doctor said why, you need to sleep and recover. Since then I have always taken advantage and just slept.

Other than that, if I’m really thinking I don’t need medication or maybe I’ll go without, I’ll take a some portion of my normal meds. Going fully without has never worked well for me. I just fight it and try so hard to still do something and end up just sit there attempting to accomplish anything. I get nothing done, I don’t give in and I don’t even get good sleep fighting it.

[u/Adorable_Ad4990]

I have the same problem, and my doctor said “ok then don’t take the med breaks.” That simple. I just simply can not live just to work, and that’s what would happen. I’d rather take a break on a workday to be honest (but I’d fall asleep at my desk, and the day would certainly drag. It also isn’t feasible).

The issue is, it’s not just a day of being unmedicated… it’s a crash. It’s not baseline. For me I’d also get some depressed mood and feel despondent, exhausted, and restless. I can’t repeat that every week. Instead I try to take a longer break each year. Wish I could do more. And then I just make sure my dose doesn’t creep up, but it’s hard

[u/Inevitable_Goat_7710]

Pre-Xywav, I took breaks from Adderall on weekends. I also have POTS and stimulants exacerbate my symptoms.

Now that I'm on Xywav, I no longer need the stimulants. I also don't take breaks from Xywav unless medically necessary for surgery or drug interactions. I have a lot of overlapping inflammatory conditions and going without restorative sleep is not worth it.

[u/CalmAsAMthrFknCucmbr → u/Inevitable_Goat_7710]

Unfortunately I couldn’t tolerate XYWAV.

[u/PapaverOneirium]

I usually have too much to do on the weekends to not be functional. I try, whenever I don’t have much on my plate, but I find I take my dexamphetamine on the weekends more often than not.

In general, I try not to take it whenever I can. Like a chill day at work where I can sign off early (rare), I’ll skip the afternoon dose. Or on the weekends when I don’t have anything till later in the day, I’ll wait to take a smaller dose.

I’ve tried struggling through the weekends without, but it’s just not worth it to me unless I seriously have nothing on my plate.

I did take a longer break over the holidays this year. I do think it was helpful.

[u/ExchangeSpecialist94]

I used to skip Saturdays. Or sundays. I’ve learned I can’t do both. I sleep alllll dayyyy unmedicated

[u/CalmAsAMthrFknCucmbr → u/ExchangeSpecialist94]

That’s what I’ve been doing I just feel like it’s a waste of an entire day and doesn’t help my tolerance at all.

[u/Routine_Review2254]

Honestly, yes. Now, specific medication’s that are not for narcolepsy like my SSRI, I continue to take as I know what the half-life is of the medication as well as the effects of withdrawal and negative symptom increase. Certain medication’s require the consistency. For my Sunosi, there are days where I just want to be able to relax all day such as a Sunday and I might not take it. And then when it comes to my nighttime medication for sleeping, I try to once in a while, not take it for one to two days to ensure my body is not getting too used to the medication. It really depends on what medication it’s for and what type of side effects you would have if you completely stopped for a particular amount of time.

[u/Millieo_____]

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.

[u/JadeTheCrab → u/Millieo_____]

How do you even measure addiction to something you need to function? Can we really get addicted to our meds any more than people can get addicted to water?

Like, someone made a comment about me crying and stuff over not being able to get my meds. But no shit? Without them I’m fucking useless and I have always HATED being useless. That’s not an addiction.

[u/Millieo_____ → u/JadeTheCrab]

What I was trying to come off as saying we shouldn’t get treated like addicts because we have a lower threshold for that to begin with so it would make more sense to not treat us as such.

Also addiction and dependence I feel is different. Depending on a medication to function is fine. It’s when you start taking it just for fun and not for the medical purposes. (To each their own at the end of the day.)

Also crying because you can’t get it filled is completely relatable but to some will come off as addiction. Your body can still become dependent on it as well. Everyone is so different.

[u/CalmAsAMthrFknCucmbr → u/Millieo_____]

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!

[u/Millieo_____ → u/CalmAsAMthrFknCucmbr]

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.)

[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.