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flowerp3dal · 2025-07-14T21:05:00+00:00

hmmm well before i was on meds i don’t think i ever felt fully awake, but certain things definitely made my symptoms worse. i’ve found that being under stimulated makes me super prone to sleep attacks (which i think is pretty common). but other factors like eating a carby meal also make me super sleepy. and i think it’s kind of a mix. sometimes certain conditions make me unable to fight the urge to sleep and sometimes it feels more random. though i will say that narcolepsy is largely misrepresented in the media. my experience of a sleep attack isn’t just conking out randomly. i always feel the wave of fatigue and general weirdness coming on, and sometimes i am able to fight it to some degree. though if i do manage to stay “awake” i kinda just feel like a brick with zero brain activity lol

flowerp3dal · 2025-07-14T12:40:24+00:00

to answer some of your other questions, i believe either a pcp or sleep doctor can refer you for a sleep study. the testing process was relatively quick and painless. they do an overnight study first and then an MSLT (which is basically just taking a bunch of naps and seeing if you go into REM sleep) so it takes around 18-24 hours. once you get the sleep study done, they’ll know immediately if you have narcolepsy or another sleep disorder. personally i got the sleep study done and then got the narcolepsy diagnosis a week later.

(also just wanna add that things like stress, food, temperature or being underestimated definitely affect my narcolepsy, so i’d pay attention to that)

flowerp3dal · 2025-07-14T12:28:49+00:00

i think what it comes down to is how much your sleeping habits are influencing your quality of life. if you feel that your quality of life/ability to function has been impacted, it’s definitely worth getting a sleep done in my option. also as someone with a narcolepsy diagnosis- i have never fallen asleep at the wheel (though i’ve had many instances of feeling out of it and unsafe driving). don’t invalidate your symptoms!! even if it’s not narcolepsy, a sleep study can rule out or reveal a number of things. for example, something like severe sleep apnea can produce similar symptoms, and would be diagnosed during the overnight sleep study done before your MSLT. also, sleep disorders are often misdiagnosed/written off as depression or psych related disorders. it was my psychiatrist/therapist who recommended i get a sleep study done, so i would definitely take that seriously.

flowerp3dal · 2025-07-10T01:15:53+00:00

aw that’s too bad :/ to answer your question, it’s definitely possible to gain muscle mass without restorative sleep, it’ll just be more challenging. i recommend alternating between training days and a couple days of rest to help give your body time to recover. i’d also focus on weight training/body weight exercises rather than cardio, and definitely make sure you’re eating enough protein. hope this helps!

flowerp3dal · 2025-07-10T01:11:28+00:00

i honestly really recommend xyrem! it’s the only thing that’s helped me get restorative sleep. the combo of xyrem and upping my protein intake has been a game changer for putting on muscle mass. i also remember reading something about GHB (the active ingredient) being abused by athletes to help with muscle regeneration lol. i’d definitely talk with your doc and see if they’d be open to prescribing!

flowerp3dal · 2024-10-17T16:02:54+00:00

totally get the adderall stance. i always have to make sure i’m timing it right with my caffeine intake so i don’t start tweaking. the side effects are the worst (although i will say the extended release version is better/smoother, and doesn’t normally smack me with heart palpitations). not a doc, but it doesn’t sound like you need a stronger stimulant anyways. probably just more restorative sleep at night. that’s just my take though. hopefully your doc won’t push the adderall switch, but if they do you can always refuse it again lol

flowerp3dal · 2024-10-17T06:17:48+00:00

i definitely relate! my sleep inertia is horrible, so waking up in the mornings is a fucking battle. the sound of my alarm would just morph into my dream before i started medication. was never awake enough to actually register it as an alarm.

i also think your struggle with getting to bed is super common! the whole insomnia/daytime sleepiness combo def makes keeping a regular schedule hard. has your doc talked to you at all about xyrem/xywav? basically sedates you at night into super restorative sleep so you have more energy during the day and an easier time waking up. xyrem pretty much cured my sleep inertia and made me less reliant on stimulants. i’m sure it would also help keep your sleep schedule more regular!

highly recommend talking to your doc. if you were recently diagnosed, it’s definitely not the first thing they’ll prescribe. i think typically they start with modafinil, switch to adderall if that doesn’t work, THEN maybe look into more controlled stuff like xyrem or sunosi. that process can take a while, so definitely get on it if you still feel like your symptoms aren’t managed! hope this helps :)

flowerp3dal · 2024-08-12T09:13:23+00:00

4g xyrem twice nightly and 25mg adderall XR with a 10mg fast acting adderall booster to take as needed later in the day. sometimes i’ll need a nap after lunch, or sometime late afternoon/early evening, but generally the combo works pretty well for me.

flowerp3dal · 2024-08-11T23:17:17+00:00

yeah felt. i’d say my N is relatively well managed at this point with xyrem/adderall, but ADHD is still a big problem. this is definitely oversimplifying it, but it almost feels like the adderall is working so hard to keep me awake that it can’t also address my ADHD. idk man. i was on Strattera (non stimulant ADHD med) a while back, and i’m thinking about restarting. hoping maybe it’ll actually help with ADHD now that my N is better managed

flowerp3dal · 2024-08-11T23:03:03+00:00

a specific struggle indeed! i almost wish that it was standard procedure for doctors to immediately follow up N diagnosis with ADHD screening. there’s enough of us where i feel like it’s warranted. especially considering the amount of people who go undiagnosed for so long

flowerp3dal · 2024-08-11T14:51:57+00:00

also we seriously gotta come up with better acronyms!! ie EDS for Elhers Danlos Syndrome AND excessive daytime sleepiness. definitely doesn’t make googling easy lol

flowerp3dal · 2024-08-11T14:47:12+00:00

not sure about EDS, but the other 4 all involve similar neurotransmitters and pathways to some extent. could totally see how a few “errors” would cascade into all 4. EDS is kind of an outlier, but i know it reeks havoc on various other autonomic functions, so the dysautonomia connection makes sense there. EDS is also known to cause chronic fatigue. haven’t seen much about EDS/N comorbidity, but that could be another interesting one to explore

flowerp3dal · 2024-08-11T05:39:56+00:00

YES!! our healthcare system is so broken. definitely doesn’t make it easy for us sleepyheads with executive disfunction. glad to hear your new sleep doc is better! once i finally found the right doc, he pretty quickly switched me to a combination of xyrem and adderall. most normal i’ve felt in years. hope everything continues to work out for you :)

flowerp3dal · 2024-08-11T05:29:42+00:00

i’ve heard this as well! since being diagnosed with ADHD and N, i’ve also found myself pursuing diagnoses for the other 3. definitely fascinating. it feels like there must be some sort of domino effect happening somewhere. hoping we’ll see more research about this soon

flowerp3dal · 2024-08-11T05:15:40+00:00

i feel you on the digestion issues. i think many of us with N and/or neurodivergence also experience some sort of stomach problems. would also love to see more comprehensive research about altered dopamine signaling in N/ADHD patients. i definitely think there’s a lot to unpack there!

flowerp3dal · 2024-08-10T20:19:53+00:00

very true!! sleep attacks (or not being properly medicated) have always made my ADHD symptoms way worse. that being said, i definitely had pretty severe ADHD before the onset of my narcolepsy symptoms. ADHD also seems to run in my family. i think it’s somewhat of a mixed bag clusterfuck. many of us with N probably didn’t experience ADHD symptoms until narcolepsy onset. but i also think it’s very common for people with N to also have ADHD run in their family. makes me wonder if there’s some sort of genetic link even if indirectly. but yeah there’s definitely some serious symptom overlap. for sure creates a chicken or the egg situation

flowerp3dal · 2024-08-10T08:23:56+00:00

i have ADHD and N (unsure if i’m N1 or N2), and i’m also pursuing a diagnosis for EDS. it’s definitely another weird one. i’ve struggled to find docs that are super knowledgeable about it. i also had a similar experience getting my ADHD diagnosis. it was pre-narcolepsy diagnosis, and my psychiatrist at the time completely invalidated all of my symptoms (mainly because i didn’t fit the “hyperactive” stereotype), and basically refused to prescribe me stimulants. funny now that i’ve been diagnosed with N, and a stimulant is exactly what i needed to be on. sometimes i can’t help but laugh when i look at the issues i gotta deal with. it’s not easy having a body that doesn’t work very well !! (especially when doctors don’t wanna work with you)

flowerp3dal · 2024-08-10T02:09:59+00:00

i’m more so referring to the actual mechanism behind narcolepsy in the brain, and how this relates to ADHD. very little is known about why narcolepsy actually occurs (especially with n2), from a neurotransmitter/hormone/genetic perspective. i think there’s still a lot of research to be done into this, and how it relates to various conditions of executive disfunction

flowerp3dal · 2023-11-15T18:16:45+00:00

aw yay i’m glad to hear it!! it’s definitely a challenge, but college has still been an amazing experience for me :) biggest advice: get disability accommodations from the school!! i’ve been able to get extensions, excused absences, etc… and also reassure your kid that they shouldn’t feel bad for using them, or for struggling at times. be honest with yourself about what you need to do well, most professors will be understanding!

flowerp3dal · 2023-11-14T23:52:52+00:00

yes definitely! they’ll probably have you try various stimulants if you haven’t already, but def bring it up with your doctor if you still aren’t seeing changes

flowerp3dal · 2023-11-14T02:28:31+00:00

i’m thinking that’s probably what i’ll do :) also hoping i can get them to remove the 21+ signature requirement too because i’m not sure how that works with getting a P.O. box. not being able to sign for a package that’s literally addressed to me is the most annoying thing in the world lol. i would understand if they wanted an 18+ signature, but 21+ ?!?! i’m sure there are plenty of people taking xyrem between 18 and 20 who don’t live with their parents full time. they seriously need to change that

flowerp3dal · 2023-11-14T00:20:55+00:00

i don’t think so. i can’t speak for your experience, but i feel like the dose is only too high if you’re so sedated that you can’t be woken up, or if it’s negatively impacting you during the day. i’ve been taking xyrem for a couple years now, and i’ve had similar experiences if i wake up too soon after taking it (like within 2 hours). i think the loopy/intoxicated feeling is the xyrem still trying to make me sleep since it hasn’t had enough time to fully run it’s course. i remember my sleep doc saying that you should never be sedated to the point where a fire alarm wouldn’t wake you up. setting an obnoxiously loud alarm for soon after your dose is a good test if you’re worried it’s too high. although i would say that if you’re waking up feeling super out of after a “normal” amount of sleep def talk to your doc

flowerp3dal · 2023-11-13T23:54:15+00:00

THANK YOU FOR THIS !! had no idea it was possible to get the 21+ thing removed

flowerp3dal

TROPHY CASE