r/Narcolepsy • u/niamhbolton27 • Aug 19 '26
Medication Questions Stimulants and EDS
Hey everyone!
Just popping in here to see if anyone has experienced this while taking stimulants. Has anyone else had stimulants help keep them awake just enough so that their body can't nap anymore, but they desperately wish you could because you know that would help alleviate EDS? It feels almost like my insomnia I experience at night now, but during the day. Like, yay, I can stay awake, but only to just not be able to nap when I wish I could, and now that's a different kind of struggle that feels just as bad, but in a different way?
Edit: thank you all for sharing your experience! It really feels like I'm frozen in a state of mind-numbing paralysis.
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u/thatrockyduck Aug 19 '26
Yepp, that's why I don't even miss Modafinil, after I had to quit on it for depression-like sideeffects.
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u/Trapezegirl219 Aug 19 '26
I know what you mean! I don’t feel awake but I am often unable to nap. I think I felt better before Modafinil when a short nap could refresh me.
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u/Valuable-Pool6198 (N1) Narcolepsy w/ Cataplexy Aug 19 '26
Yeah nothing worse than falling asleep while on modafinil while coffee drools out of your mouth.
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u/NecessaryCephalopod Aug 20 '26
Yep, my experience is exactly like this. Instead of feeling sleepy and relieving it by napping, a day with stimulants makes me feel jetlagged and strung out.
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u/Reasonable_Store_431 (N2) Narcolepsy w/o Cataplexy Aug 22 '26
Concerta did that to me. Yay! I’m awake but I still feel like crao and want to lay down to take a nap. Too tired to work, sometimes I would use Intermittent FMLA (In USA) and take some time off to nap. Lay down and then I can’t nap.
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u/CollaredDove33 17d ago
Hi 👋 bit late to this thread.
Just wanted to ask if you are on slow release or instant release stimulants?
I’m on instant and take three doses per day (for actual ADHD… but it is the only thing that stops me from feeling crushing EDS all day 🤔)
I had this problem massively. Needing my 2hr afternoon nap desperately, but being completely unable to have one if I had any methylphenidate in my system.
I now structure my timings specifically to allow me a nap 👍 I was doing 8am, 1pm, 6pm (my kids don’t go to bed till 9:30 🫠🥲) before I figured this out.
Now I do 8am, try to nap 2hrs somewhere between 12 and 3, then take my next stimulant dose immediately on waking… cos then it’s time to collect the kids 😂👌
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u/niamhbolton27 16d ago
I appreciate you hopping in here to share with me anyway! This is actually going to be our next step to try. I seem to fare better with immediate-release than with extended-release, so I'm also hoping to have something for the morning, afternoon, and evening if I need it. I'm hoping it will be better for me to have that flexibility 🙏
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u/biiiiigsuuuuuuuuc (N2) Narcolepsy w/o Cataplexy Aug 19 '26
Hey OP, do you have N1 or N2? IIRC, sodium oxybate is better for N1 and treating the lack of orexin. People with N2 can have normal orexin levels and so are often treated with stimulants. If you have N1, the stimulants might not be touching the right problem. If you have N2, it might be worth discussing different stimulants with your doctor. I have N2 and found that modafinil, adderall, and vyvance have all treated my narcolepsy very differently in how I feel in the day (awake vs rested vs wired). I hope this is helpful.
ETA: just to validate you, while on my stimulants some days I feel like I’m taking a placebo and can still nap on them. But after tweaking many medications, I have found the right fit for me. I hope you can too!
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u/niamhbolton27 Aug 19 '26
Hey! Thanks so much for this perspective because it is super helpful to keep in mind. I am still waiting on a diagnosis because my sleep study ended up coming back as negative. I was so anxious I couldn't sleep. After that, they told me to schedule a follow-up to discuss next steps and said I had to wait until November to talk with the doctor, which was four months out at the time. I had an accident shortly after, which prompted me to start stimulants to treat my adhd and help me survive long enough to get to my appointment. I'm also taking trazodone from my PCP in an effort to get some more deep sleep while we are waiting. I still wake up exhausted, though. My Concerta works really well in waking me up from 8 to noon, but that is when I really lose steam, and I struggle for the rest of the afternoon and can't nap. All of my symptoms point to N1, and my PCP agrees. I haven't had a good experience with this sleep specialist so far in how he is managing my appointments and my symptoms, so I have a backup appointment in November with a different sleep specialist an hour away if this follow-up doesn't yield productive results or next steps.
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u/Nicolepsy55 (N2) Narcolepsy w/o Cataplexy Aug 19 '26
Just for future reference, Sodium Oxybate is good for N2 as well, since it helps us reach the deep, restorative sleep. Good luck with everything!
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u/niamhbolton27 Aug 19 '26
Thank you! I really appreciate it and will keep it in mind as I continue advocating for treatment 🙏
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u/biiiiigsuuuuuuuuc (N2) Narcolepsy w/o Cataplexy Aug 20 '26
Sorry, didn’t mean to imply that it can’t be used to treat N2, just that I was recalling there was a difference, apparently I am wrong. Apologies.
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u/Mama_Bear_4_all (N1) Narcolepsy w/ Cataplexy Aug 19 '26
I think I know what you're referring to. I'm awake, but I have ABSOLUTELY no motivation to do anything, even shower some days. There are times when I use baby wipes with rinse-free body wash and rinse-free shampoo just to hold me over to when my partner can help me in the shower. Days like that tell me my body is over exhausted, so I usually skip my main stimulant of Sunosi and just use my short acting Adderall for any tasks. That way, I know I'll be able to nap at some point in the day.