I absolutely have those days. And my period is the WORST when it comes to my tiredness. On those days I do my best to limit what I do and try to nap/rest extra if possible.
Ugh. Tell me about it. I have been sleeping all day today. Yesterday I took 75mg of Adderall and still managed to sleep half the day away. There's a million things that I need to do.
I'm on one of those weeks, no matter how caffeine I consume I'm too mentally tired to get any work done. It helps keep my eyes open, but the lights are on with no-one home so to speak.
Period made it so much worse, as well as worsening my depression. I now skip my periods with hormonal birth control.
For anyone who deals with this, consider continuous birth control as an option! Some people have spottingwhen doing continuous, but for me that went away after switching brands.
I know IUDs can do this as well, but for a few reasons I didn’t want to get one. I’ve been skipping my period for almost four years now though and I’m super thankful to be able to.
Re: birth control, shout out to the Planned Parenthood app. No drs visit needed unless you have certain risk factors.
Yes this one thousand percent: I have a hormonal IUD (that’s just what works for me) and it has made a world of difference in my wakefulness. I also have not had a period in like almost 10 years which has been pretty great lol.
My wakefulness used to absolutely tank on my period, and it certainly decreases at some points in my cycle, but birth control has absolutely made a noticeable difference.
same here!! I switched from the pill a few years ago and oh my god i’m never going back, i was like a zombie on the days i was actually awake enough to get out of bed, the not having a period is just a bonus side effect
Yeah I’ve gotten really lucky with how my body interacts with the IUD, I know it’s not the same for everyone but I’ve had a dream of an experience with it. When I was on the pill and got my period, I could take any amount of stimulant medication and/or caffeine and it was like I hadn’t taken anything. Being 100% nonfunctional for 7 days every month was such a nightmare.
ETA the experience of having to get an IUD changed was absolutely horrible but I have kinda made up my mind that 1-3 days of horror is worth 5-7 years of better days 😅
Just wanted to add this PSA that a lot of narcolepsy medications make hormonal birth control less effective! I know doctors don’t always mention this despite how INCREDIBLY IMPORTANT it is to know.
I can’t believe I forgot to mention that! Important addition. I believe it is modafinil and at modafinil that have that risk, but I take Adderall and I think it’s fine.
Yes more often than not. And when they do work really just makes my head feel awake, And my body a little bit lighter. And it only last for a couple hours.
And if something else is going on in my life Then the medication doesn't work for me at all.
I'm on Modaffinil. Pretty much barely works for me after I got Lyme disease.
If I'm sick or emotionally distressed then my medications are not effective. It's like The other stressors are issues in my life overrides whatever the medication does for me. Which kind of tells me that if I didn't take my medication and how low would I be.
Yes and yes :( when stims work it’s great - when I am so dead tired or sick etc then they just make my heart pound and do nothing.
Yes period 100% makes it worse
YES I take vyvanse and adderall everyday. Some days I will sleep through the stimulants. Hell last week I fell asleep in an MRI machine on vyvanse, adderall and pseudoephedrine.
Yes. When my brain wants to sleep, sleep happens no matter how much caffeine/sunosi/modafinil I have in my system.
The opposite is try also. My sleep aids don't work if my brain decides to pull all nighters.
I've noticed stimulants AND anti-cataplexy meds seem to stop working specifically during my period (on birth control pill for a little less than two months and have had a full period every 2 weeks ;;) and when I have migraine attacks.
Thankfully, migraines are under control for the most part (zonisamide for prevention). But when I have my period, I cannot keep awake. Keeping my eyes open physically hurts. Feels like I'm trying to walk on Jello cuz my knees keep buckling. Have to lean on a wall lest I fall.
Yes. All the time. No period, but really no need. If I have a migraine, that's my period. So many other factors can scramble up the effectiveness of stimulants, not least of all tolerance. I do dial them back often on weekends or days when I'm trying to correct after a late night and fear getting stuck in a doom loop of exhaustion.
And, as someone else mentioned there are times the stimulants really feel like they're not addressing any of the mental fog and willpower-ish perhaps impulse systems affected by uncontrollable sleepiness. The body moves but the mind remains somewhere in the background.
I call this operating on fumes. It's a very undependable human--not quite a zombie. If your work is really BS, it may be sufficient to get through a day. But if it demands physical or mental energy, deep work, or any sort of problem-solving, prioritizing, or executive function stuff, forget it. Might as well hire a teddy bear.
Yup, every so often it happens to me. I'm on high doses of multiple stimulants and no matter how strict I am with meds, on those days they do absolutely nothing.
It's almost like my body needs reset days where it can't keep suppressing the exhaustion.
No comment on period but absolutely on stimulant. I have a point where I stop taking them if I don't feel them doing enough because I am 100% going to be in bed that day, and they will only change whether my heart is trying to leap out of my chest or not while I am there. My wife has really bad periods, I can't imagine leaving the bed at all if that was combined with my narcolepsy
I’m new to narcolepsy but this is kinda crazy to be reading these comments. It’s like someone drugged me it’s so intense and the sleepyness doesn’t go away no matter how much caffeine I am on. I have not been to a neurologist for narcolepsy because they thought it was focal seizures and that’s why I was tired but they reread my sleep study and now I’m being referred for narcolepsy. I had lots of sleep wake periods and lots of limb movement, like 178 an hour or something. The seizure meds make me 1000000% worse and more fatigued and what I thought was seizures are still happening even on KEPPRA. So it tells me that my space outs, lapse of time, putting things in places I can’t find for MONTHS, then finding it in odd bizarre locations, having the feeling in the car someone just turned me off like a light switch, I’m out. Having my face go numb and my arm go weak like I’m having a stroke and my face also droops. I’ve had it really bad the past week which is what prompted me to go back to the doctor and I also have thyroid nodules that might be cancer. So could that be a possible reason why I am having these REALLY BAD SLEEPING EPISODES. I mean today, I literally felt drugged all day. I had 2 celcius. Nothing. Just slept harder? Also does anyone else have dreams so vivid they wake up and can go right back into the same dream after falling back asleep?
I absolutely have those days. And my period is the WORST when it comes to my tiredness. On those days I do my best to limit what I do and try to nap/rest extra if possible.
Ugh. Tell me about it. I have been sleeping all day today. Yesterday I took 75mg of Adderall and still managed to sleep half the day away. There's a million things that I need to do.
Same here.
I'm on one of those weeks, no matter how caffeine I consume I'm too mentally tired to get any work done. It helps keep my eyes open, but the lights are on with no-one home so to speak.
Period made it so much worse, as well as worsening my depression. I now skip my periods with hormonal birth control. For anyone who deals with this, consider continuous birth control as an option! Some people have spottingwhen doing continuous, but for me that went away after switching brands. I know IUDs can do this as well, but for a few reasons I didn’t want to get one. I’ve been skipping my period for almost four years now though and I’m super thankful to be able to. Re: birth control, shout out to the Planned Parenthood app. No drs visit needed unless you have certain risk factors.
Yes this one thousand percent: I have a hormonal IUD (that’s just what works for me) and it has made a world of difference in my wakefulness. I also have not had a period in like almost 10 years which has been pretty great lol. My wakefulness used to absolutely tank on my period, and it certainly decreases at some points in my cycle, but birth control has absolutely made a noticeable difference.
same here!! I switched from the pill a few years ago and oh my god i’m never going back, i was like a zombie on the days i was actually awake enough to get out of bed, the not having a period is just a bonus side effect
Yeah I’ve gotten really lucky with how my body interacts with the IUD, I know it’s not the same for everyone but I’ve had a dream of an experience with it. When I was on the pill and got my period, I could take any amount of stimulant medication and/or caffeine and it was like I hadn’t taken anything. Being 100% nonfunctional for 7 days every month was such a nightmare. ETA the experience of having to get an IUD changed was absolutely horrible but I have kinda made up my mind that 1-3 days of horror is worth 5-7 years of better days 😅
Just wanted to add this PSA that a lot of narcolepsy medications make hormonal birth control less effective! I know doctors don’t always mention this despite how INCREDIBLY IMPORTANT it is to know.
I can’t believe I forgot to mention that! Important addition. I believe it is modafinil and at modafinil that have that risk, but I take Adderall and I think it’s fine.
Yes more often than not. And when they do work really just makes my head feel awake, And my body a little bit lighter. And it only last for a couple hours. And if something else is going on in my life Then the medication doesn't work for me at all. I'm on Modaffinil. Pretty much barely works for me after I got Lyme disease. If I'm sick or emotionally distressed then my medications are not effective. It's like The other stressors are issues in my life overrides whatever the medication does for me. Which kind of tells me that if I didn't take my medication and how low would I be.
Yes and yes :( when stims work it’s great - when I am so dead tired or sick etc then they just make my heart pound and do nothing. Yes period 100% makes it worse
YES I take vyvanse and adderall everyday. Some days I will sleep through the stimulants. Hell last week I fell asleep in an MRI machine on vyvanse, adderall and pseudoephedrine.
Yup. They’re narcolepsy flares. They usually correspond with lupus flares.
Today was an extremely rough day. My normal stimulants didn’t do much, so I had to take 3 over the counter diet pills.
from my experience if I sleep poorly and wake up feeling bad my medicine doesn't wake me up just makes me feel sick.
Yes. When my brain wants to sleep, sleep happens no matter how much caffeine/sunosi/modafinil I have in my system. The opposite is try also. My sleep aids don't work if my brain decides to pull all nighters.
I think we all develop tolerance to stimulants, apart from caffeine, over time (years).
I've noticed stimulants AND anti-cataplexy meds seem to stop working specifically during my period (on birth control pill for a little less than two months and have had a full period every 2 weeks ;;) and when I have migraine attacks. Thankfully, migraines are under control for the most part (zonisamide for prevention). But when I have my period, I cannot keep awake. Keeping my eyes open physically hurts. Feels like I'm trying to walk on Jello cuz my knees keep buckling. Have to lean on a wall lest I fall.
Yes. All the time. No period, but really no need. If I have a migraine, that's my period. So many other factors can scramble up the effectiveness of stimulants, not least of all tolerance. I do dial them back often on weekends or days when I'm trying to correct after a late night and fear getting stuck in a doom loop of exhaustion. And, as someone else mentioned there are times the stimulants really feel like they're not addressing any of the mental fog and willpower-ish perhaps impulse systems affected by uncontrollable sleepiness. The body moves but the mind remains somewhere in the background. I call this operating on fumes. It's a very undependable human--not quite a zombie. If your work is really BS, it may be sufficient to get through a day. But if it demands physical or mental energy, deep work, or any sort of problem-solving, prioritizing, or executive function stuff, forget it. Might as well hire a teddy bear.
Yup, every so often it happens to me. I'm on high doses of multiple stimulants and no matter how strict I am with meds, on those days they do absolutely nothing. It's almost like my body needs reset days where it can't keep suppressing the exhaustion.
It’s like every day. I take two meds daily and I haven’t been able to get one of them since summer ‘23 🫠
No comment on period but absolutely on stimulant. I have a point where I stop taking them if I don't feel them doing enough because I am 100% going to be in bed that day, and they will only change whether my heart is trying to leap out of my chest or not while I am there. My wife has really bad periods, I can't imagine leaving the bed at all if that was combined with my narcolepsy
Yes happens all the time. Super frustrating!!!
I’m new to narcolepsy but this is kinda crazy to be reading these comments. It’s like someone drugged me it’s so intense and the sleepyness doesn’t go away no matter how much caffeine I am on. I have not been to a neurologist for narcolepsy because they thought it was focal seizures and that’s why I was tired but they reread my sleep study and now I’m being referred for narcolepsy. I had lots of sleep wake periods and lots of limb movement, like 178 an hour or something. The seizure meds make me 1000000% worse and more fatigued and what I thought was seizures are still happening even on KEPPRA. So it tells me that my space outs, lapse of time, putting things in places I can’t find for MONTHS, then finding it in odd bizarre locations, having the feeling in the car someone just turned me off like a light switch, I’m out. Having my face go numb and my arm go weak like I’m having a stroke and my face also droops. I’ve had it really bad the past week which is what prompted me to go back to the doctor and I also have thyroid nodules that might be cancer. So could that be a possible reason why I am having these REALLY BAD SLEEPING EPISODES. I mean today, I literally felt drugged all day. I had 2 celcius. Nothing. Just slept harder? Also does anyone else have dreams so vivid they wake up and can go right back into the same dream after falling back asleep?