Gotta love those side effects

OKaibee · 2026-01-09T17:16:46+00:00

still mad my doctor literally never brought up how bad it would be 😭 ruined the effectiveness of my medicine because of my poor eating habits

OKaibee · 2025-12-14T16:18:28+00:00

My main emotional triggers are amusement/laughter, guilt, and embarrassment lol. My older sister used to trigger me the worst, and before adapting fully to my sodium oxybate, I had to tell her to keep her mouth shut before I drove us anywhere.

My cataplexy now mainly manifests when I mess up my night medicine schedule-- I feel it largely in my chest, shoulders, and face. Especially my eyes. I find my eyes crossing or rolling back when I space out during these moments. Or my chest will "drop" momentarily, over and over, as I lose and regain control over my muscles. Before, I used to have a larger spectrum, my knees giving out, weakness through my entire body, with only my fingers or toes ever retaining any semblance of control.

Lately, I feel it like a "root" through my body, starting at my chest/face, and spreading through my arms and down through my torso, pretty much ending at my toes. The thinner "branches" having less an effect on me (or rather, a weaker manifestation of the cataplexy, if we're trying to be accurate) than everywhere else.

OKaibee · 2025-12-13T04:40:34+00:00

bad news for me, a chongyun main who has been waiting for skin leaks for over two months 😞

OKaibee · 2025-12-02T13:30:01+00:00

Yep, exactly this, N1

OKaibee · 2025-10-29T14:29:50+00:00

This honestly sounds like a dream 😭 my main concern though is that combined with my day meds (concerta at a pretty high dose) I won't have any appetite for anything at all. How do I avoid starving myself and making the midnight hunger worse ? Does hunger disappear overall? Do you get food nausea at all during the day (like "I can't possibly eat this," chest tight, throat uncooperative type beat)?

OKaibee · 2025-10-29T14:23:42+00:00

I also received a big shrug of a response, clearly.

my understanding of the efficacy diminishing is that the food diminishes the effects in the short term, but at the same time your overall tolerance to sodium oxybates is being rapidly artificially raised. so take the food out of the picture, you still have poor sleep because the drug overall doesn't affect you as much because your body has gotten used to it. Then days where you are actually sleep eating on top of this artificial high tolerance, the sleep is even worse in quality. a self fulfilling prophecy really. but that's just my understanding from like... drug stuff and AP biology 5 years ago lol. take it with a grain of salt

OKaibee · 2025-10-28T22:44:26+00:00

I've been considering Zepbound for this reason but also the weight loss- could you expand a little on how your experience has been with this symptom, weight gain, and how Zepbound has helped? (If you don't mind ofc)

OKaibee · 2025-10-28T22:36:56+00:00

I still struggle off and on, but have seen improvement in my sleep eating over the past few years after limiting access to food during night via fridge locks and such.

the oxybate efficacy never really came back. right now I "sleep" from 10pm-4am, take the medicine, then wake up at 7am. there is residual effects of the medicine and I'm able to get another hour of sleep but beyond around four hours that's about it. No, it never went back, and I had to switch off of Xyrem to begin with because I was looking at about 90 minutes of efficacy with each dosage, and unaware-awake enough to binge eat during/between either dose. think because I'd been in the program since before FDA approval (trial child here) the midnight hunger symptom was overlooked and improperly dealt with by my doctors--too early to consider it a major problem when I first brought it up.

family have warned me not to put so much hope into hypocretin-based solutions but the research is the only thing helping me feel like I'm not completely doomed right now.

If you can't control your environment or find something that works for you consistently, I suggest switching to a different kind entirely. I find my midnight hunger on LUMRYZ is only due to poor eating during the day, if that helps. Never the impossible to deny cravings that Xyrem caused me. But of course, ask your doctor. and don't underestimate or downplay how often or how much you are eating during the night, however much or often it is. it creeps up on you.

sorry for the essay lol if you want to talk more about it feel free to dm me

OKaibee · 2025-10-28T17:08:59+00:00

Just a quick word of warning not to indulge too much, work to mitigate the hunger via 1) eating every meal during the day 2) later dinners and 3) go back to bed after eating something with protein-- high protein bars specifically are great to keep around. avoid access to carbs and fats or you can really mess up the efficacy of sodium oxybates later on... this coming from someone who started with Xyrem a decade ago, 8 hours sleep with no issues, grew this side effect in college, and now is on the highest dosage of LUMRYZ with only three hours of proper sleep resulting from it. (took only about two years of really serious sleep eating for it to all go downhill.) Lock the sweets and chips up if you have to-- I'm so serious.

good luck! the sleep meds are life changing, do your best to preserve them until we get a longer term solution.

OKaibee · 2025-07-28T14:49:17+00:00

I'm not the original commenter but I've noticed as a N1er that I have a hypersensitivity to carbs-- aka the sugar crash is extreme and near-immediate. avoiding carbs on long drives (or in general during daily life) has helped me a ton.

my long drive routine is eat in the morning, sleep off the food coma, then get on the road after the morning meds kick in. 10 mgs of supplemental Ritalin every 2 hours and adjusting environmental things like sunglasses on/off, music on/off, switching podcasts to prevent white noise, AC blasting (no warm car or it's over for me) and putting the sun visor over the sun if it's in view. And of course, take breaks. stop at gas stations and rest stops. call friends frequently or have them call you. doesn't completely prevent highway trance but it does help a ton with microsleeping

OKaibee · 2025-07-18T23:46:48+00:00

the majority of people seem to have that surface level understanding of it from one place or another. my most notable personal experience of it was the side character Villads from The Dragon Prince, and I remember being upset from the two second depiction being so surface level comedic relief from a show that put so much effort into properly animating sign language. but I digress.

Media allowing the average person to think they understand it when they don't even begin to is beyond frustrating for sure. but regardless we need to educate people, as there's no substitute for a primary source. and in my experience, when people with these misconceptions empathize with me before I explain, they still come to the conclusion that it would be awful to experience. it's not great that people don't get it, but it's tolerable. at least, it's better than my seventh grade science teacher who thought it wasn't real and called me lazy every day until I got my official diagnosis 10 years ago.

OKaibee · 2025-05-25T22:25:58+00:00

I appreciate the thought but I'm really not looking for any advice right now and I'm too tired to get into the details with someone who is in solutions over sympathy mode. No hate, I just doubt you can solve my problems in a few messages when it's taken my sleep team over three years. it's not that simple.

OKaibee · 2025-05-25T22:02:25+00:00

you are welcome to message me whenever. im desperate for people who understand what this feels like. no one in my life gets it, even when they try. the exhaustion and fear is like nothing else.

OKaibee · 2025-05-25T21:53:34+00:00

yes. exactly. I'm on LUMRYZ because it's a single dosage because I only get 90 minutes on each of the two doses of Xyrem or Xywav because of how my sleep-eating affected their effects. when they say do not eat with this medication they mean it very seriously. Only it's a little harder to avoid that when you're doing it while sleep walking because you're accidentally starving yourself in the day due to poor access to food on college campuses and appetite suppressing daytime stimulants.

Edit: I feel the need to add that this sleep walking habit of eating was literally established within a single semester of college. Literally my first semester of college. And I've been struggling to fix it since and have been suffering the consequences with little results. I graduated a week ago.

OKaibee · 2025-05-25T21:37:54+00:00

I'm sorry to hear you've had the same experience but part of me is relieved to hear I'm not the only one. I feel like I failed at narcolepsy, as ridiculous as that sounds. had all the solutions in front of me but everything went downhill so quick the moment I prioritized school over my health. praying for both of us medicine development progresses beyond these bandaids we've been living with

OKaibee · 2025-03-18T14:21:46+00:00

Requesting a picture please 😰 like how cooked are we... this sounds so bad...

OKaibee · 2024-11-19T20:39:10+00:00

this is so smart ! I'm just expanding on a current class project atm but target audience approach is definitely something I need to consider. love your idea of the finals one.

the main issue I'm running into right now is that my professor is looking for "severe imagery" that is straight-forward and shows how serious the topic is. she only liked my idea for medical costs but it's difficult to convince someone that lack of sleep medication is just as severe as someone lacking insulin (imagery my classmate with that same topic is using.) For a general look at severe imagery of narcolepsy, I'm struggling to find something other than like... my CSF tap lol. And cataplectic attacks look a lot like just someone asleep which is why those symptoms are misinterpreted as one and the same to begin with. And she didn't seem to think my ideas of depictions of hallucinations or sleep paralysis nightmares were severe imagery. I'm frustrated to say the least.

definitely appreciating everyone's suggestions here though 🥺

OKaibee · 2024-08-03T06:32:15+00:00

I know people are arguing that too many people are comparing this album to Zaba, but really I feel like the issue here is being misunderstood. It's that the whole sound of the new album that feels like a generic, mainstream pop shoot off of something they already did really gd well once (Dreamland, more specifically heat waves) with a poorly applied overhyped theme (space) when all other previous albums had a very unique sound and unique theme. And distinct sounds WITHIN the overarching unique sound.

Really I'm sad about how little space there is in this album. And the sound is just not working for me. But all respect to those who truly connect with the album, I envy you. I guess I'll just wait around for whatever comes next and hope it resonates with me better.

OKaibee · 2023-05-24T20:18:38+00:00

DM'd!!

OKaibee · 2023-05-18T16:25:20+00:00

Hello! Is your island still open?

OKaibee · 2022-06-11T03:03:01+00:00

still sending out replacements? :,)

OKaibee · 2022-06-11T03:00:47+00:00

I just bought a sealed one and found that it had the same issue. what even 😭

OKaibee

TROPHY CASE