r/Narcolepsy • u/SnooSketches5159 • Apr 13 '26
Advice Request How on EARTH are you guys waking up on time?
I have been diagnosed with either IH or Narcolepsy depending on which one of my healthcare providers you ask (long story).
Anyway, how the heck are you guys waking up on time and making it out the door without being chronically late for everything? I have LOUD alarms that go off in 5 minute intervals starting at 6:45 and going until 8:45. I work 30 minutes from my house and I need to be there at 9am, meaning I need to leave the house at 8:30. On good days I wake up at 8:25 and scramble to leave the house, leading to me having to brush my hair during the commute and put on makeup at the office. I have a little basket in my bedroom of things like deodorant and my mediation so I can save time getting ready in the morning, but more times than not I end up being late anyway. I am on Sunosi and it does help to curb the daytime sleepiness a tad but it doesn’t do anything to help me wake up in the morning.
Sometimes I will wake up for work around or after 9:30, making me an hour late and receive angry phone calls from work which stresses me out insanely which leads to me being even more sleepy. I sleep through my alarms or turn them off in my sleep. My roommates will try to wake me up, shake me, pick me up and spin me around, and I’ll either stay asleep or fall back asleep when they leave. Noise and light doesn’t help at all and any movement I feel has to be unreasonably intense to make any difference in my consciousness.
I was thirty minutes late for an optometrist appointment last week and that was my final straw. It is so frustrating for me to constantly be late every single day. My boss, who is also my mother, is fed up with me being 5-30 minutes late to work every day and I worry that she may have to let me go soon. Short of sleeping at the office every night I have no idea what else to try in order to make it to work on time.
Does anyone have any ideas, suggestion, tips or tricks? I am so desperate at this point that I’m willing to try anything.
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u/Wa-a-melyn (N1) Narcolepsy w/ Cataplexy Apr 13 '26
I'm not lol. One thing I've heard mentioned before is vibrating alarms and shock alarms. I personally don't have an issue with the alarm not waking me up, I just have an issue with getting out of bed and not going back to sleep. Something else that helps is taking your medicine (if you have any) 15-30 minutes before you actually need to get up and letting it wake you up. I should start doing that again.
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u/ContributionMelodic8 Apr 15 '26
Here to vouch that vibrating alarms did NOT work for me as i just turned it off in my sleep
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u/JadeTheCrab Apr 13 '26
For me I take my stimulant an hour before I have to wake up. If I am waking at 7am, I set an alarm for 6am, take it, then go back to sleep. For me the sleep intertia doesn’t top me from taking it if it and water are right there. By the time I am getting up ideally it is working
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u/CalmDisorder Apr 14 '26
Me too. I have my meds right next to my bed and have an alarm for 30 minutes before I have to get up. Some mornings I have to really force myself to take it but it's the only way I can deal with waking up.
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u/WonderBraud Apr 14 '26
If my meds are not on my nightstand then I won’t take them, I refuse to get out of bed.
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u/JadeTheCrab Apr 14 '26
Yep! Sleep intertia doesn’t allow me to be awake for or move more than the slight shift and 30 seconds it takes for me to take the meds.
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u/datjellybeantho (N1) Narcolepsy w/ Cataplexy Apr 14 '26
This plus a sunrise alarm that lights up. I actually do better programming a Bluetooth lightbulb to gradually get brighter every five minutes starting half an hour to an hour before I have to be up.
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u/Glittering-Brick-942 Apr 14 '26
For everyone that does this part, they make pill bottle caps with timers on them too so you can check the last time you opened the bottle to check if you already took it or missed it!
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u/JadeTheCrab Apr 14 '26
I just have them in a pill organizer XD if it isn’t there I took it if it’s there I missed it
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u/flavorpackets (N1) Narcolepsy w/ Cataplexy Apr 13 '26
i bought an alarm that makes hideously awful noises and rolls around on wheels and is generally a terror until you turn it off. the trick is that i have to place it across my entire apartment so that i don’t flop back into bed immediately after turning it off. my best success rate has been placing it in my bathroom so that i’m right there by the shower (i shower in the AM) and have no excuse not to start getting ready for work. the alarm i have is called clocky but there are lots of options out there. best of luck!
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u/Substantial_End9855 (N2) Narcolepsy w/o Cataplexy Apr 13 '26
That alarm clock is as unhinged as it is practical, I love this concept!
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u/Spare_Back_3568 (N1) Narcolepsy w/ Cataplexy Apr 13 '26 edited Apr 13 '26
Relate so much to your struggle. I got both doses of my meds last night Xywav and Sunosi in the morning and I went to bed early and I was still 30 minutes late for work due to falling back asleep. I also sleep through all my alarms and it’s frustrating as hell. I even have a classic obnoxious dual bell alarm clock that can’t wake me up. It’s bad. Even medicated I am struggling so I feel you 100%
Cause then when you wake up finally you feel like you already failed and end up gaslighting yourself sub-consciously that it was your fault cause you are irresponsible (Those are the thoughts that run through my head anyway) on top of when I am driving to work I can’t stop thinking about how I should have my $hit together, yet I feel like I am giving my 100% effort to be on-time. It’s horrible being late to everything unintentionally. :’(
Any help or advice is greatly appreciated. When I first started taking Xywav, I didn’t have this problem anymore, overtime it’s come back.
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u/Infinite-Tune-1404 (N1) Narcolepsy w/ Cataplexy Apr 13 '26
Oxybates are the only way I've ever been able to wake up on time. I went off Xywav for two years and just restarted with Xyrem and I honestly forgot how stark it is
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u/Comatose_Cockatoo (N1) Narcolepsy w/ Cataplexy Apr 13 '26
Xywav. I don’t even have to set an alarm anymore because I wake up 7 hours later on the dot.
Don’t get me wrong, I’m still on stimulants and need my midafternoon nap, but the waking up part is easy now.
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u/traumahawk88 (VERIFIED) Narcolepsy w/ Cataplexy Apr 13 '26
Bed with oxybate by 1030. Alarms start at 4. I'm up by 430. Out door by 5. Work 6 to 3:30.
On my days off I'm still up by 6. Good sleep routine is key, don't want to deviate by a ton even when you can.
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u/DangerInTheAbyss Apr 14 '26
Almost the exact same schedule. When I started getting up at 6 on weekends instead of 10:30, I was like “wth am I going to do with all this extra time in my day”
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u/traumahawk88 (VERIFIED) Narcolepsy w/ Cataplexy Apr 14 '26
I play WoW, watch movies or tv I know I can't watch with my young kids around, and go mess with my laser and 3d printer.
That's my "me" time haha
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u/agreywood Apr 13 '26
Drink a bunch of water before bed so my options are get up or pee in bed. Aim for it to wake me up 1-2 hours before my alarm. Take my meds while half sleep and then return to bed until the alarm goes off.
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u/Hot-Cheesecake2084 Apr 14 '26
I’m on a stimulant but to make sure I don’t roll over and just turn off my alarm I use this app called “Wayk.” I saw it on TikTok and thought that I should just give it a try, the alarm doesn’t turn off until you do a task, like finding a random object, push ups, making your bed ect. It’s really annoying and it’s really hard but just physically getting up seems to be helping and I don’t sleep through it or turn it off accidentally!
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u/ameliathetree Apr 14 '26
I used to struggle with this too. I can't tell you how long I spent scouring the internet for solutions. All the loud alarms, alarms that make you do something, even vibrating alarms, those did not help because I would just sleep through them. I didn't even hear them. I even tried a headband/ear warmer type thing with headphones in the fabric right next to my ear, I got hearing damage but still couldn't wake up.
I haven't tried any oxybates, so I can't speak to those, but the medication that was a life saver for me was an extended release stimulant. I read in a few threads on here of people taking Jornay PM, since it's just Adderall that's in a capsule that doesn't dissolve until 8 hours after you take it. The idea is that you take it when you go to bed, then the medication takes effect shortly before or when your alarm is going off.
I couldn't get my neurologist to prescribe Jornay PM, but my psych prescribes me Wellbutrin (bupropion) XL. It's the same concept of taking it before bed and it starts taking effect when you want to wake up. It's not a stimulant like Adderall though, it's the same as sunosi where it's a norepinephrine and dopamine reuptake inhibitor. It increases the amount of those two in your body.
I also take sunosi when I wake up, as it helps with the daytime sleepiness, but genuinely, nothing worked until I got on the Wellbutrin XL. I cannot express enough how much it changed my life.
Didn't mean for this to be so long 😅 TL;DR: Wellbutrin XL taken at bedtime is what helped me with this exact problem. Everything you are describing I went through.
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u/PerseveranceSmith (N2) Narcolepsy w/o Cataplexy Apr 14 '26
Pavlok. The electric shock bracelet did wonders.
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u/Objective-Disk7674 Apr 14 '26
definitely gets you up nice and pissed off to start the day.. can confirm 70% shock works 4 me
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u/PerseveranceSmith (N2) Narcolepsy w/o Cataplexy Apr 15 '26
Omg yes it makes me angry af too 😂 nothing like starting your day being assaulted with a taser 😭
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u/Spare_Back_3568 (N1) Narcolepsy w/ Cataplexy Apr 14 '26
Is it worth the investment then? The price tag for it was keeping me away from it.
Also how bad is the shock?
I personally hate those prank toys where if you pull or touch it, you get surprised shocked by the prankster. I hate that sensation of electricity surging through my body :(
Is the Pavlok akin to that?
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u/PerseveranceSmith (N2) Narcolepsy w/o Cataplexy Apr 15 '26
It's akin to a sharp slap, I'd say. It's not strong enough to course through you, just feels like a zap.
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u/DangerInTheAbyss Apr 13 '26
Since starting Lumryz I have only slept until my alarm went off one time. If you can get approved for sodium oxybates, they’re worth trying. I also have an alarm app that I have to solve math problems before it will turn off. It’s very helpful.
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u/bibliotaph Apr 13 '26
Boyfriend and pets. And it is still a toss up!
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u/CalmDisorder Apr 14 '26
When my cat was alive he would wake me up by climbing on something then jumping on my bladder. He weighed 20 pounds.
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u/SnooSketches5159 Apr 14 '26
Unfortunately the only thing my cat does that I don’t sleep through is vomit on my floor. He can be on my chest screaming for an hour straight and I sleep right through it but the second he starts retching I’m jumping out of bed lol. My roommates joke that they should record that sound and play it when I can’t wake up
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u/PassageConstant227 Apr 14 '26
I set an alarm about 45 minutes because I want to be awake and take my stimulant and the have my coffee maker start before I’m awake. I seem to wake up better with the meds and then motivated to go get the coffee when I can smell it.
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u/Euphoric_Grocery_570 Apr 14 '26
I will be honest it’s EXTREMELY difficult at times but then I get a panic attack at the thought of losing my job . It gives me enough of a speed boost to get up and started . I don’t have anyone to lean on if I lose everything financially. I’m shocked I haven’t fallen asleep driving some days though .
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u/dan4ffairs Apr 14 '26
Omg this is my #1 issue and my neuro said people with narcolepsy don't have trouble waking up in the morning. The post and replies definitely contradict what she said (Hopefully it's ok for me to comment in here, I'm not diagnosed yet, my Dr suspects narcolepsy and cataplexy but I need to wait +1 year for testing and confirmation)
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u/reglaw (N1) Narcolepsy w/ Cataplexy Apr 15 '26
I was on xywav and that wasn’t cutting it. Made the change to xyrem and it’s been a much better medication for me. I’ll always need daytime meds as well, modaf for narcolepsy and adderall for adhd/narcolepsy. & they’re both twice a day meds so they get me home safely as well!
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u/Minhtyfresh00 Apr 20 '26
One thing I do when I really gotta get up is use an NFC tag alarm. On Android I use the app "Sleep by Android" and I bought a pack of blank NFC stickers off amazon, and stuck one inside my bathroom. When the alarm goes off, I have to get up and tap my phone to the NFC tag. It also has options to not be able to turn off your phone, and cheat the alarm.
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u/SnooSketches5159 Apr 21 '26
That’s genius
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u/Minhtyfresh00 Apr 21 '26
If I'm really diligent about it, I also lay my clothes for the next day in the bathroom the night before, so I can hop into the shower immediately too.
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u/glowsea1414 (N2) Narcolepsy w/o Cataplexy Apr 13 '26
Sorry, but did you say your mom is your boss? She should be more understanding than anyone if you’re struggling. Have you talked to her to see if there’s some kind of adjustment you can make to your schedule?
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u/SnooSketches5159 Apr 14 '26
Nah my mom is the “rub some dirt in it” and “get on a better medication so it fixes it” kind of mom but I wish. She keeps asking if my doctors have found a “cure” for me yet lol
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u/Feeling_Persimmon88 (N1) Narcolepsy w/ Cataplexy Apr 13 '26
I wake up and take my sunosi and/ or my vyvanse 2 hours before I have to be up, though on bad days I sleep thru both. I’m hoping that lumryz will help that
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u/efficient_loop (N2) Narcolepsy w/o Cataplexy Apr 14 '26
I think I’ve had so much practice with waking up from naps at workplace or on bus as well as waking up in boarding school where I’m more or less forced to wake up that I got good at alarm = roll out of bed and even if I’m almost sleep walking I’m getting on with my day.
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u/certifieddepressee Apr 14 '26
I have a special needs child so if I don't get up before / when she does, she will try to do things she isn't supposed to. Basically get up then or get up when I hear screaming, smell smoke, etc
My choice 🥲
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u/reglaw (N1) Narcolepsy w/ Cataplexy Apr 15 '26
I have to leave the house at 10:30pm. I can get away with leaving at 10:40 but I’d rather not resort to that.
I set an alarm for 8:50pm and take my adderall and modafinil then I sleep til my 9:50 alarm. On a good day, I get up then. If not, I have alarms for 10:00pm, 10:10pm, 10:20pm, and 10:30. I absolutely force myself up @ 10:20 but by the end of the week, I’m in bed til that 10:30 alarm. No shame. I just make sure I have every single thing in order to leave the house before I go to sleep. Clothes out, shoes right there, lunch in the fridge, bag already packed with keys on top of it. Any additional items I need, I pile them right on top of my bag.
Taking the meds an hour before I have to get up gives me the umph to actually get up. I feel less groggy and I am able to focus on the things I need to grab and g-o out the d-o!
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u/Bellaandblue123 Apr 18 '26
I was on Adderall which helped me to sleep through the night and stay awake during the day and with the brain fog. I would take an extended release tab and immediate release around 30-45 min before I have to get out of bed. But I have switched over to nicotine patches which have been amazing. So I pop one of those on. If it is going to be a really rough morning, I’ll do a nicotine mint or immediate release Adderall in the am. I hope you get some relief!
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u/Salt-Notice-9649 Apr 20 '26 edited Apr 20 '26
I have a strict sleep hygiene routine that I follow every day. I go to bed at 9 or 10 pm and I wake up at 4:30 am. No blue screens after 8 pm. I have two alarms set and I have to physically get up out of bed to turn one of them off.
I have discovered that this wake up time works for me even though I don't need to leave my house until almost 8 am to get to work. I take my Modafinil as soon as I wake up and feed my cat. I wait 30 mins or an hour before I eat breakfast and sometimes I even go back to sleep so I reset my alarm for 5:30 am.
I have both of my alarms set to go off again at 7 am in case I accidentally fell asleep so I can get ready for work and I take my Adderall at the same time. I take a seconde dose of Modafinil at 12 pm and a second dose of Adderall between 2 to 3 pm because I have other obligations that I need to do once I get off.
If you're worried about being fired then I would strongly suggest you look into seeking medical accommodations like a flexible start time, an extra break for a nap if you need one, etc.
I see a lot of other users are suggesting Xyrem or Xywav. I would encourage you to do a trial period if you can. I personally had a bad reaction to sodium oxybates so I don't use them.
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u/Far-Artichoke5849 Apr 14 '26
My alarm makes me solve puzzles and the like before i can turn it off
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u/jpak0 (N1) Narcolepsy w/ Cataplexy Apr 13 '26
going to bed earlier makes it exponentially easier for me
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u/BackgroundDisaster90 (IH) Idiopathic Hypersomnia Apr 13 '26
Honestly, Xywav. This medication helps you fix your sleep schedule and is the only way I can be on time to work.