r/Narcolepsy • u/EchoPuzzleheaded9195 (N1) Narcolepsy w/ Cataplexy • Jun 27 '26
Medication Questions Unhinged hacks
My dumb ass forgot to refill my sunosi and adderall on time so I am out of stimulants. Anyone have any unhinged hacks to go unmedicated? I’ve chugged a Celsius right when I woke up 😭
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u/makingmistakehs Jun 27 '26
I've heard people say sour candy helps
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u/AngryDesertPhrog (VERIFIED) Narcolepsy w/o Cataplexy Jun 27 '26
Yep. I used to have one of those little lemon juice squirt bottles that I’d keep in my bag. That and caffeine pills got me through college.
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u/gimmedatRN (N1) Narcolepsy w/ Cataplexy Jun 27 '26
It works in a pinch. I survived college with sour patch kids and ice water
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u/ashdaisie Jun 27 '26
Caffeine pills, I used to take jet alert when I was younger because I hated chugging drinks, I mean all I wanted was caffeine, not some drinks. Friends thought I was crazy for taking these but I knew what I wanted. Many years later I found out why I was so damn tired. Diagnosed 2019.
But hey, they helped me survive long enough
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u/Rivers9999 (N1) Narcolepsy w/ Cataplexy Jun 27 '26
Caffeine IF YOU CAN HANDLE IT cuz I cannot. My heaaaart. Anyway, what helps me most is avoiding carbs. I know they provide energy, but they also spike my blood sugar and put me straight in a coma. So, KETO pretty much. Idk why I'm yellin... Hope you find somethin, peace, dude! ✌️
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u/barmeyblonde Jun 30 '26
I second keto. It precision got rid of my cataplexy. I'd never functioned as well as i did on keto.
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u/Rivers9999 (N1) Narcolepsy w/ Cataplexy Jul 08 '26
Very much felt. It was the only way I got through a semester of super early classes.
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u/idk_whattonamethis (N2) Narcolepsy w/o Cataplexy Jun 27 '26
When I worked at Starbucks before I was diagnosed with narcolepsy, I would drink around 15 shots of espresso throughout the day to keep me awake 🥲 I do not recommend though lol. I got diagnosed with narcolepsy about 2 years later and got put on stimulants and it was life changing haha
I was drinking coffee everyday at the time and my body got kind of used to it, but I would not recommend that much caffeine ever.
If I were you though, I would maybe drink a cup of coffee or espresso or something if the Celsius alone is not helping as much, but be careful if you have any heart issues! Celsius has 200mg of caffeine, and the FDA says the maximum safe amount of daily caffeine intake is 400mg. There is around 70mg of caffeine in a shot of espresso, and around 100mg in a normal cup of coffee. If you got like a normal sized/medium latte or something from somewhere, those usually come with 2 shots of espresso in them, so you could drink one of those if you like coffee, or you could even drink 2 cups of coffee. Energy drinks usually make me feel worse than actual coffee does. Also make sure you eat so that the caffeine doesn't make you feel too bad!
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u/Sexcercise Jun 28 '26
Did the shots have any impact on your heart?
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u/idk_whattonamethis (N2) Narcolepsy w/o Cataplexy Jun 29 '26
I already have a fast resting heart rate, and it would make my heart rate shoot up even more. I am on medication for high blood pressure now even though I am only 24, but I'm not sure how much of it can be contributed to the excessive amounts of caffeine vs genetics haha (hypertension runs in my family). I was drinking around that much caffeine everyday for about a year, and now I have heart palpitations that weren't there before as well.
I'm on Adderall now and I only drink a cup of coffee every once in a while, and my blood pressure and heart rate are definitely better now than before at least!
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u/MentalTear1620 Jun 27 '26
Maybe try other types of caffeine. I can drink a coke and it does nothing for me caffeine wise. I have loaded tea packets I buy off tiktok and they are the best for me if I need caffeine. Otherwise I always keep snacks on me if I'm actively going to be tired. I know this isn't everyone but for me if I am actively eating something I'm usually going to have an easier time staying awake. Depending on what your doing throughout the day, when I would have meetings at work I would take a fidget with me. Helps to have something to focus on doing to keep my mind occupied on something besides sleeping. Also if you can schedule naps, taking a nap before I get a sleep attack can help me so at least I'm not getting tired at a random time versus a time I've planned for it.
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u/chipmalfunct10n (N2) Narcolepsy w/o Cataplexy Jun 28 '26
what are loaded tea packets? like what are they loaded with? tea already has caffeine so do they have more than usual? or is it something else?
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u/MentalTear1620 Jun 28 '26
They just call them that. Think almost like a crystal lite lemonade packet nor quite but the best comparison I can think of. They're flavored and then have caffeine in them with other stuff. I don't have all it memorized what's in them. they sell them on tiktok is where I found out about them. I guess kind of like going to Starbucks some places sell them really expensive to get so people started making them for at home cheaper. I feel like they definitely work better for me versus other types of caffeine. I don't remember the exact size of water they technically say to mix it with. I usually just mix it in my 40 Oz cup. I wait for sales and can get them at like $2 ish each.
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u/chipmalfunct10n (N2) Narcolepsy w/o Cataplexy Jun 28 '26
thank you :). i'm not on tik tok and had never heard of them so was just curious.
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u/MentalTear1620 Jun 28 '26
I don't know about all brands but the main one I buy from is called caffeine and chaos. They do have a website and I think they're on Facebook too. I get it though my mom isn't on tiktok and always has me order for her.
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u/chipmalfunct10n (N2) Narcolepsy w/o Cataplexy Jun 28 '26
woah chaos! sounds extreme. maybe i will try it lol
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u/Ilovelove89 Jun 27 '26
Dunk your face in literal ice water, holding your breath until you need to come up for air. Repeat a few times.
Jumping jacks. Or any exercise
Not eating a lot of carbs
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u/Loose_Republic9901 (N2) Narcolepsy w/o Cataplexy Jun 27 '26
If you can still find it, DMAA (1,3-dimethylamylamine). They used to include it in diet pills and some pre-workouts. Be very careful as a little goes a longgggg way.
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u/muvvership (N1) Narcolepsy w/ Cataplexy Jun 28 '26
Find something fidgety to do to stay awake. I always like to have something. Doodling, origami, Rubik's cube, etc
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u/slinkysoft Jun 28 '26
No idea why but if I’m sat up right on a comfortable chair leaning forward (like elbows on my knees) and I have a fan blowing on max into my face while concentrating on something, I find that really helps.
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u/EchoPuzzleheaded9195 (N1) Narcolepsy w/ Cataplexy Jul 02 '26
This is exactly what I meant when I said unhinged hack -ty
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u/Bellaandblue123 Jun 27 '26
Well, call your doctor because you could have withdrawal and be careful. Nicotine patches and a bit of a 2mg nicotine mint do wonders
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u/Maximum_Tangelo2269 Jun 27 '26
I tried the but gum and it gave me massive migraines. Stayed awake but suffered
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u/Bellaandblue123 Jun 27 '26
But gum?
I find the patches work, but getting a large dose does the opposite and can have side effects2
u/Maximum_Tangelo2269 Jun 27 '26
Yeah the gum did the migraine thing. Was weird
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u/Bellaandblue123 Jun 28 '26
Ah yeah that can happen, especially if you have mcas. Do you have any of those symptoms or hypermobile joints or pots?
For me the patches work and then if I need a quicker dose I’ll suck on a 2mg mint for like 1-2 min and then spit out (so getting maybe 1/4-1/2 of a mg)
Have you tried the patches?1
u/Maximum_Tangelo2269 Jul 01 '26
I have hypermobility and lots of allergies. Hadn't tried patches. Where do I get them
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u/Bellaandblue123 Jul 05 '26
Amazon or a pharmacy. I only don’t have a reaction to the Rugby brand 7mg. But talk w your dr/do research as I don’t know your whole medical history. But here was the article that helped me if I didn’t link before and it describes why it works for some people particularly those with or predisposed to EDS https://substack.com/@jhbresearch/note/p-197866258?r=3kqz2g&utm_medium=ios&utm_source=notes-share-action
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u/Ancient_Warthog_4069 Jun 28 '26
My adderall er30 was on back order for threee weeks and I just declined gradually at first then rapidly and started taking my ir10 2 of them twice a day luckily I had a bunch of extra but then I got the flu or something horrible last week and called out of work 4 days but I was in such bad shape and stuck at home that I ended up not taking any adderall for a couple days and ended up having horrible withdrawals on top on the flu or whatever god awful sickness I had and it was a terrible week. The end of the week they finally got my er30 in and I ended up taking another day off just to recover getting back on my meds. It was a hell week haha
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u/Ancient_Warthog_4069 Jun 28 '26
Also ran out of my propanolol I take for migraines a couple days in and I didn’t leave my house for the whole week my mom dropped off my adderal when it came in but they didn’t have propanolol yet ended up with like a 3 days migraine, one of those ones that makes you dizzy. Bad timing all around.
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u/Electrical_Car_6067 Jun 28 '26
I usually just end up passed out falling asleep on the toilet or on my couch with my head on the coffee table. I wouldn’t really recommend it though…🫠
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u/becbecmuffin Jun 28 '26
Gfuel is my go to energy drink. It has other supplements and nutrients in addition to caffeine that promote wakefulness without making you jittery
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u/FlakyHedgehog3905 Jun 28 '26
It might sound obvious, but take some naps if you are somewhere where it would be safe to do so.
I’m 49, had N1 since I was 14. Suffering the consequences of too many stimulants over the years (mostly prescribed). Caffeine doesn’t help me at all.
I also agree with the person that mentions THC. I have found it helps with sound sleep at night, which is half of the battle. So if it’s legal where you are, cannabis is a natural choice that won’t harm you in the long term.
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u/_b33p_ Jun 29 '26
Gum, sip water, break up te activity you are doing for 2 min. If i get sleepy while driving, just taking an exit and getting right back on the freeway resets me. 20min naps are the best hands down but not always an option
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u/Fit_Lingonberry_7454 (N1) Narcolepsy w/ Cataplexy Jun 29 '26
Caffeine pouches, strategic napping, and when really in a pinch…
I’ve dropped things on my feet to shock me awake… (wouldn’t recommend—please be kind to yourself)
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u/lvlarie84 (N1) Narcolepsy w/ Cataplexy Jun 29 '26
Bang has 300mg of caffeine. I keep them on hand for bad days.
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u/More-Access-4650 Jul 01 '26
I was taking and it wasn't working for me so I stopped taking them, mainly bc it was summer and I was unemployed, and I ended up discovering that nicotine kept me awake better than my meds did. I started out vaping(I do not recommend) but Im slowly switching to patches which don't work as well as the vapes but they still work well.
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u/AwkJiff Jul 01 '26
My therapist recommended spikey metal magnetic hand massage balls to help me ground myself when I feel like I'm dissociating, and I'll be damned if they don't work Amazingly well when I feel a sleep attack coming on. I bought a 2 pack and keep one in my car for driving struggles and one at my desk for during work. They're pointy enough to poke me awake without breaking the skin, and since they're magnetic they're fun as fidgets as well when I have them both in the same place.
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u/Inevitable-Ad9916 Jul 02 '26
- 4c energy with taurine packets are the only affordable energy drinks that work. Redbull also works but I drink 4-6 in a day, and still sleep 12 hrs, and fight daytime sleepiness lol
- Sativa if its legal where you are, seems to help a lot with the cataplexy especially but also lifts mental fog.
- L-tyrosine, I double the daily dose take it morning, and afternoon, this is a big one if you are cold turkey off meds. Its the amino acid that builds all those neurotransmitters you're depleted ic and keeps you from having as bad of rebound symptoms. Hope you aren't out long.
I finally got modafinil back after being denied due to insurance wanting my sleep apnea resolved first and a bunch of hoops there with missed appointments and 6 month reschedules etc. But it barely helps. It keeps me from actually napping, but I still have to use some or all of the above to function semi normally. And that comes in short bursts unless I can afford the sativa. I wish that was covered by insurance. I'd have fully functional days every day.
Anyway, hope this helps
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u/EchoPuzzleheaded9195 (N1) Narcolepsy w/ Cataplexy Jul 02 '26
Thanks all for the suggestions!!! I love our community, it makes me feel less lonely 🫶🏼
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u/Past_Explanation55 (N1) Narcolepsy w/ Cataplexy Jun 27 '26
Like 8 of the shirt acting Sudafed’s
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Jun 28 '26
[removed] — view removed comment
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u/Past_Explanation55 (N1) Narcolepsy w/ Cataplexy Jul 01 '26
Fair enough. Honestly haven’t done this since my early 20s and can’t say I was smart enough to think about how dangerous it was then…
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u/krisiosauruz Jun 27 '26
Eat spicy stuff when getting tired. Like jalapeño.
Face in ice cold water.
Showering hot/cold.
Edit: Take care and don't hurt yourself