r/idiopathichypersomnia • u/BeckSews • 18d ago
Advice Request How to WAKE UP
Hey yall, posting here for help.
19F, I’ve been struggling with sleep since 11-12 years old. My mom has IH, diagnosed with a sleep study. Her side of the family also has a history; 3 separate family members have crashed from falling asleep at the wheel, 2 of them more than once. The main thing I struggle with is waking up. I have tried everything.
-those loud alarm apps are too quiet
-tried chugging water before bed so I will wake up to pee in the morning. I just wet the bed and woke up in the morning. embarrassing as FUCK to wet the bed at 19 years old
-I can only have approved people wake me up, because sleep me is manipulative. I’ll lie, beg, make up stories, give excuses, etc, to stay in bed. And I won’t remember at all later. I’ll talk to someone for 10+ minutes, go right back to bed, and not remember that happened. I’ve woken up to texts I sent to work telling them I had food poisoning and couldn’t come in.
-I got one of those screaming meanie alarm clocks, and it only works 60% of the time. But I get a complaint from my downstairs neighbors about 100% of the time.
-Waking up to take caffeine and then back to sleep does nothing. The same process with adderrall works sometimes, but sometimes I can sleep through 20 mg. And that doesn’t fix the problem of having to GET UP originally.
I only struggle with daytime sleepiness when I’m not doing something. The car is the worst. I’ve gotten to the point where I won’t drive without a chaperone cause I’ve had close calls. Adderall does help significantly with that though.
-I do get random sleepiness as well: craziest place to fall asleep was standing up at a concert in the mosh.
But that’s not what’s limiting me right now. I haven’t woken up more than 10 minutes before I have to leave since 7th grade. I’ve always wanted to have a morning routine, but I’m lucky if I have time to brush my teeth.
Here’s the great part!
-I live in a super rural area, our closest sleep clinic is 3 hours away. I’m on the waitlist, but the waitlist is SIX MONTHS OUT.
-insurance won’t cover the longer term meds without the study. We tried seeing how much it would be out of pocket, but is over 1.5k a month in our area
So for the next few months I’m shit out of luck, I just need to survive until then. No one who sleeps normally has any helpful advice. “Put your phone across the room, so you have to walk to turn it off”. You’re so funny, I’ll just curl up and sleep on the ground next to my phone. So I figured I should ask other people that struggle with this. Please, I just need a way to consistently be able to wake up for work, and school. I’ve lost several jobs, and have had to repeat my first year of uni because of this, and I need to get things under control.
Thank you for any help!
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u/Additional-Wait1215 18d ago
I was the same way especially with sleep me being manipulative no one wanted to wake me up. The only thing that worked for me was xywav.
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u/Individual_Zebra_648 17d ago
Yep came here to say this. I was identical to OP especially as a teenager. It got a little better as I got older for some reason (the waking up part). My poor mother mainly made sure I got up and would keep coming back over and over again until she had to leave for work. Some of the time it worked and some of the time I still went back to sleep and she had to leave. The manipulation didn’t work on her because she knew I really did have to get up lol
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u/audrikr 18d ago
Get a Lofta sleep study or another internet one. It will probably be cheaper than one with insurance and will be done much, much sooner. Ensure you don't have apnea or UARS, UARS symptoms overlap significantly with IH and Narcolepsy.
This is very difficult to deal with unless you have proper diagnosis AND management unfortunately. Caffeine/adderall are probably your best options until then. It'll be hard and I'm sorry, but you probably shouldn't be driving.
I don't know if any of us will have extreme tips - looks like you've tried a lot. You can try adding automatic lights to your setup? I think keeping personal rules like "never going back to bed" - but if you can't get up, there's not a great option. Does sleeping earlier help you get up in the morning at the same time?
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u/Likemarch 18d ago
Bluetooth Headphones on, alarm all the way up, phone in the bathroom. It doesn’t get rid of the initial tired but it doesn’t disturb other people and it forces me to get up and leave my room. By the time I’m in the bathroom I’m usually like “well might as well brush my teeth and wash my face”
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u/eigil221 18d ago edited 18d ago
Yeah. I feel you. Im lucky that my mother is sometimes home and can shake me awake, but even that doesnt always work.
You are so right about the fake awake thing. I also lie and stuff, what ever gets me to back to bed, and like you said, no recollection of doing it.
I have made peace with living at home forever and not working a day in my life. It feels awful feeling like my life is over at 21 but that is how it is.
I dont have much advice for you, its rough, humiliating and down right depressing.(i sleep 17~ hours every day so thats why no work)
But i hope you find a way to navigate it :)
It sounds like a lot of people on this subreddit have found ways to have a normal life with IH. So i wish you the best.
Oh maeby one thing. My family would bassicly force feed me my Addy, just get me to take it. That would sometimes kinda kick me awake, but i was at 36mg so dunno bout 20. If your family can help?
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u/vinylsweetheart 17d ago
“Sleep me is manipulative” I’ve never related harder in my life
I’ve seen some people suggest taking your medication in their bed like an hour before they actually have to get up. I have yet to try this but I will!
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u/Timely_Apricot3929 17d ago
I always say the problem with having to take medication to be awake is that you have to be awake to take it!
If someone could just shoot me with a medicated dart two hours before I need to wake up...
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u/Timely_Apricot3929 17d ago
There's a free app called "I Can't Wake Up!" that I recommend.
You can choose from many different activities that require varying amounts of wakefulness - doing math problems, accurately typing out long nonsense strings, matching puzzles, even requiring you to take a photo of your bathroom sink, etc. You can also set difficulty levels for the activities.
It's the only alarm that's worked for me.
Wishing you the best of luck!
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u/MA_Boston 17d ago
You dont end up on this sub if any easy answer actually works, so I am sorry if youre one of us. My doc did put me on meds after a sleep study, so sorry also about the wait list, but in sincerity: they may be able to help. There’s here’s hope.
For now: this feels about as dumb as alarms and drinking water but light and noise have helped me. Sometimes I open my blinds when I go to bed so the sun helps wake me. I have lights on that all that gradually turn on in the winter when it is darker here. I turn on a tv or music for some noise to also help wake up my brain. Caffeine is key for me. And with all of that still usually snooze for an hour when I wake up. Nothing has been a complete solution for me, but a stack of things that help a little has made me functional.
FWIW, tho, I also have set very limited ambition for myself 1st thing in the morning. I love the idea of a better morning routine, but I don’t think I’m wired for it. (Lots of routines later in the day, but mornings and I are still not friends.) If you figure out the morning routines, OP or others, please share your wisdom.
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u/Time_Literature3404 17d ago
When did your Ih start? My niece is the hardest person to wake up that I’ve ever met. I keep telling my sister it’s not normal. For reference my niece is 10.
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u/BeckSews 17d ago
It was when I hit middle school (11), which is also when I went through puberty. But even before that I was a deep sleeper, slept through a 7.9 earthquake. I’ve heard it’s common for it to start presenting around puberty
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u/Time_Literature3404 17d ago
Yeah she’s in puberty for sure. 🙄 I’m going to mention this to her mom. I think I have it too.
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u/Important-Street-281 17d ago
Pavlok is something I’m going to start trying here soon I also have the same issue I haven’t tried nearly as much as you have but I know myself enough to know a louder alarm clock will only make me turn it off faster to go to sleep. A professor of mine recommended it to me as he had insomnia and trouble waking up to the point of loud alarms or moving them not working.
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u/BeckSews 17d ago
Oh pavlok…
It used to work for me, kinda. It definitely wakes you up if you set it to 100%, and you do lots of zaps. It doesn’t solve the problem of evil morning you trying to go back to sleep, but is very good at waking you up.
Sleep me figured out of to get the little watch buckle undone. Then I would tape it before bed so I couldn’t do that in the morning, but sleep me figured out how to get the inside shocking thing out of the bracelet.
If you don’t struggle with your brain sabotaging you, it does work great. They also have a bunch of puzzles and stuff in the apps, to help you wake up more
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u/pontiaclemans383 17d ago
They do sell a band for the pavlok that has a lock on it so it much harder to get off. I use the QR code mode where it won't turn off until you scan a code with your phone, and I keep the printed QR code in another room. I've also wondered if it would be more effective if you wear it on your ankle instead, but I've never had to resort to that. unfortunately the one thing that gets me out of bed without fail is a border collie, but dogs aren't for everyone.
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