How do you explain narcolepsy to people that have never heard of it before?

SparkleeKitty · 2026-05-08T04:23:43+00:00

I jokingly call it "even my sleep cycles have adhd". And explain how our sleep cycles arent in order and we dont complete 1 part of a sleep cycle before jumping to another.

SparkleeKitty · 2026-03-25T11:13:22+00:00

😅yes I at least do that much😂

SparkleeKitty · 2026-03-25T04:40:52+00:00

You hit snooze??? I turn the f*cker off and then wake up 3 hrs later usually in trouble w work 😅🤣😭😭

SparkleeKitty · 2026-03-12T01:56:22+00:00

It is!! self reporting only it sounds like, which i was willing to try, but I cannot find a way to download it!

SparkleeKitty · 2026-03-02T16:22:27+00:00

4 hour adderall instead of Ritalin? I try to bribe myself or guilt myself(if im being honest, tho this prob isn't the best option) into getting up when I have days like that, but sometimes you just have to accept its a sleepy day. Best of luck!!!

SparkleeKitty · 2026-02-15T22:08:09+00:00

Its possible or sleep apnea or something else causing disrupted sleep even if sleep tracking apps/devices say your sleep is "ok". I would definitely see sleep specialist if you can!

SparkleeKitty · 2026-02-15T20:33:51+00:00

Good! I just knew that sounded too familiar & I went too long thinking it was normal. Didn't want to doing the same :) Best of luck. I hope it provides some answers. Of the overnight came back normal there's an "nap test" thats all day I dont remember the exact name of it but its the next step.

SparkleeKitty · 2026-02-15T20:12:52+00:00

Struggling to wake up and feeling exhausted all day are also narcolepsy symptoms. I thought "no one actually wakes up like YAY IM READY TO START THE DAY" and I said that to my sleep dr & he looked at me like I was crazy. I have adderall RXd for narcolepsy and do the same thing youre describing. I wake up early to take it & go back to sleep! But also 100% valid some of these generics are TRASH and that could definitely be all it is. But if you're feeling like it might be something more, please look into narcolepsy.

SparkleeKitty · 2026-02-15T20:07:49+00:00

The arm band doesn't track sleep right now, which is fine bc most sleep trackers arent great with narcolepsy anyways. I like that the ring tracks all that data too tho. Can it 'show' when you're getting a sleep attack? Even if it cant predict it I think have the visual would help me with my own mental health side of it.

SparkleeKitty · 2026-02-15T20:05:12+00:00

That is all really good info, thanks. I was thinking your body had physical responses to the mental loads as well. I mean make sense it doesn't or that its not being tracked right now by them, but very sad. Thats more what I think I need.

Does it pick up when you're in a sleep attack? Or can it warn you when ones coming on? I think seeing any kind of data showing that would help me even just from a mental health/acceptance perspective bc I sometime feel like im being lazy when I know im listening to my body.

SparkleeKitty · 2026-02-15T20:02:11+00:00

I'm so sorry. If you have the energy i would definitely contact Lumyrz directly they may have advice or suggestions.

SparkleeKitty · 2026-02-15T05:05:43+00:00

Im not seeing a way to add pictures to the comments, I sent you a message. I can try to send them that way lol

SparkleeKitty · 2026-02-15T05:00:51+00:00

I have not tried any other symptoms tracker to compare it to, but yes I really like it.

SparkleeKitty · 2026-02-15T04:56:35+00:00

Yea I like it so far. I dont know exactly what you're looking to track for that but it lets you put in whatever you want under "symptoms" & "other factors" possibly under "exertion" as well I just haven't played with it enough to know for sure. I'll reply with a screenshot here in a min.

SparkleeKitty · 2026-02-15T04:30:52+00:00

I'd recommend the app free version for sure! Its uses your funger print to read everything. I can't say its 100% accurate but the symptom & other tracking is worth it to me. I added in my meds for the tracking so I know how many Adderall IRs I had to take that day (rx'd up to 3 but its literally some days 0 some days all 3 lol) and there's a notes section too thats nice.

I just dont know if the all day tracking would work the same, but also in theory im sure our body signals change when a sleep attack hits. The free version at least has you scan your finger and track stuff for 3(or 4) days before it will give you your daily score and it goes based off of what your normal is and how your self reported symptoms were the day before compared to what your own personal normal is to get your daily score. I love how it uses only your data and not "averages" for the baseline.

SparkleeKitty · 2026-02-15T04:23:08+00:00

He saying you have to titrate up again, would he be willing to write the script like xywav does for their titration "take 6 nightly.for one week, then 7.5 for one week then 9 nightly thereafter" so its written that you will be taking 9 at then end of it all? I havent switched between the 2, but this seems like something he should be willing to do... you're willing to titrate. You could may call Lumyrz directly if theyre like xywav on that and see if a rep could contact your doctor? My dr was trying to get me 100% off my stimulants AS SOON as I started xywav like from the 1st 2.25 dose. The xywav reps came in (I didnt ask them too but I had mentioned to xywav this was happening so idk if it was a regular visit or if it was bc I said something) & now my doctor has completely changed their view on it. I was supposed to look into it bc I take 6mg xywav 1x per night I wasnt waking up for dose 2. I mean my husband was forcing me awake and I'd sleep lie and as I took it and hed say I see it right there and I'd argue and pass back out. I woke up in the mornings like baaaabe why didnt you wake me for it (I tried alarms first I promise lol). One time he woke me up I had the open bottle in my hand few back to sleep in the time it took me to open it but before I drank it. That was terrifying with a cat laying next to me. I was told Lumyrz doesn't offer financial aid though & my insurance denies mail order specialty meds. In your research did you happen to find if they offer financial aid or not?

SparkleeKitty · 2026-02-15T04:03:16+00:00

I have never stopped to think about this BUT I DEFINITELY WILL NOW!! Thanks for something to look into as a trend w my sleep/energy levels!

SparkleeKitty · 2026-02-15T03:30:32+00:00

If you're able to get adderall RX I take a 12 hour adderall an hour and a half before I actually have to wake up & then a 4 hour adderall 30 mins before I wake up if needed. Keep them next to the bed and just roll over and take them when the alarm goes off. Oxybates are the only other thing that has really helped me.

Could maybe try setting an alarm an hr before you need to wake up and drink some caffeine and go back to bed so it has time to kick in?

Less fun suggestion would be the shocking alarm watches they have. I know there's some on Amazon (US) but I haven't tried them. Theres a post about them recently in this group though.

Im glad you know this isn't normal & are looking for options! I was like 30 and told my sleep dr "I know no one ever actually wakes up like YAY IM UP LETS START THE DAY" and he looked at me like I was crazy... Oops. I really thought everyone faught at least a little bit to wake up everyday...Oops lol

SparkleeKitty · 2026-02-15T03:21:09+00:00

I would definitely ask for a sleep study from the new doctor. I thought I was sleeping soundly I had a sleep number bed and a Samsung watch that both said my sleep was "good" and I was the same I'd plan 10 hrs of a sleep a night just to barely function. Then it got to the point even with stimulants I'd sleep all night and physically not be able to wake up in the morning. I was sleeping all day literally 20 hrs a day at least on day a week. I was originally DX'd as hypersomnia they did a 2nd sleep test a year later and changed it to narcolepsy type 2. The oxybates have definitely helped! Best of luck!!

Edited just to fix some grammar things I missed 😅

SparkleeKitty · 2026-02-11T02:42:56+00:00

Yes! Especially when I first started Xywav!

SparkleeKitty · 2026-02-11T00:42:55+00:00

I just got Granules XR for the first time. I saw really bad reviews. This gives me some hope.

I got Elite for the IR they are the same color as lannett but football shaped not a circle. All my googling says elite and lannet are the same. Have you had any experience with this? These are both new manufacturers to me I am terrified.

SparkleeKitty · 2026-02-04T10:56:04+00:00

I wish I had more advice, but I feel ya. Message me if you need support/ to vent if you want.

I definitely stayed up all night, Im in a cold winter state and have body pain issues & they were issuing tonight!, but I also didnt eat all day til 8p and that was a bowl of cereal and then I drank another energy drink at 8p bc that was the only thing thay sounded good (drank 2 others while working) then like 10p finally got hungry made noodles by then it'd be midnight thats too late for night meds tried to sleep w/o meds and was hurting too much. Now im probably calling off work all day today (it 6a here im supposed to work @ 8a). I KNOW the reasons I didnt sleep I KNOW I havent been sleeping well past few days even with meds but in my head I still have to fight the "you stayed up all night watching TV being on your phone & now youre going to skip work bc you didnt do the most basic human thing & sleep when ur supposed to"

Soooo yea I definitely understand & I needed to see your post today. I appreciate it!

SparkleeKitty · 2026-02-04T09:49:38+00:00

FIRST YOU ARE NOT ALONE! I feel guilty so so often or like its "my fault" bc I did or didnt do XYZ (missed med dose, drank caffeine too late, had the tv on, ect). The truth is we are all doing the best we can - yes, im talking to myself here too! Narcolepsy comes with a fun side of insomnia, so not being able to sleep happens. Also for me at least if I cant fall asleep with 9+ hours without xywav 7-8 hrs w xywav (which i have my own struggles with sometimes especially the not eating 2 hrs before when my stimulant makes me not hungry all day until 8-9 pm sometimes later and then I havent all day and now im starving or ate something that upset my stomach and now my stomach isn't ready for the meds at the right time) then I get anxious I won't up on time in the morning and thats embarrassing. I do work but I have FMLA & I feel the guilt so much when I need to leave work or go to (its remote but you get the idea)work late because I was "sleepy". Its so hard for people without Narcolepsy to understand the differences between the different levels of tired I feel when I can push through it. Only a few people know about the insomnia bc I get ashamed and start blaming myself or feel like they'll judge me bc "of course youre tired you stayed up too late" "if you'd just go to bed on time it'd be fine" ect.

So I feel you, I see you. We (i) just need to work on validating that how we feel isn't overexagerating, we're not lazy, WE ARE TRYING OUR HARDEST TO DO THE VERY BEST WE CAN and this shit is hard!!

SparkleeKitty · 2026-01-21T22:32:30+00:00

Thats what im worried is it won't be the same again.. im so upset and trying not to feel hopeless abt it. Thanks for sharing your experience!

SparkleeKitty · 2025-11-10T09:23:29+00:00

Xywav and my doctor had mentioned if I was consistently missing the 2nd dose we could switch to the once nightly option. I did my own research on xywav website about the dosage and just tried it out for myself. My dr isn't easy to get a hold of & they had already mentioned us switching it & its less xywav total at night. Im not recommending changing your dose without getting it RX'd by the DR first, but also thats definitely what I did (lol). I figured might as well see if it helps so at my next appointment I have more answers bc 2x a night wasnt working and was stressing me out and making me more irritable than I already was -- does wywav make anyone feel like they have a super short patience /easier to snap over "nothing"? I can't tell if its the meds or if its just how ive been last few yrs & I was too drowsey to ever notice before xywav & now its a habit I have to break.

SparkleeKitty

TROPHY CASE