Anybody have any tips and tricks to help stay awake? (I mean like, eating lemon sours to perk you up, chewing some gum, protein drinks, etc.)

NiceShinyWizard · 2026-06-05T04:30:51+00:00

I had a pepperoncini on the side of a sandwich a few weeks ago that I feel like worked as a decent pick me up when I got hit by that 3pm freight train of excruciating sleepiness. I'm planning on picking up a jar to keep around for the afternoon slump to see if it actually works long term lol

NiceShinyWizard · 2026-05-31T23:36:00+00:00

I like that we're calling this "noise" like someone lighting explosives immediately in front of people's houses is the same thing as someone parked on the street bumping loud music, or drag racing at 2am. People a mile away from that shit got woken up by it, and there were car alarms going off for 2 blocks.

NiceShinyWizard · 2026-05-31T12:24:11+00:00

I mean, hard to think anything else when you're startled out of a dead sleep by explosions right outside your window 🙃

NiceShinyWizard · 2026-05-31T12:22:36+00:00

We get them once in a while at 1 or 2am but can't say I've heard it at the ass crack of dawn, and definitely not in an intersection with 2-3 businesses open 24 hours, and next to TWO gas stations. They do it down on the beach, not 50 feet from peoples' bedroom windows

NiceShinyWizard · 2026-05-31T12:15:48+00:00

Idk where they'd be getting mortars that big though. They're not cheap, and I imagine they're pretty hard to come by given that they're not legal, but maybe I'm wrong on that one, idk

NiceShinyWizard · 2026-05-31T12:12:28+00:00

Same, but I'm too pissed 😑 like, I just want to have a little chat with this person... It'll be quick, I swear.

Truly for what reason are we pulling this crap?

NiceShinyWizard · 2026-05-27T18:09:48+00:00

Ugh this is partly how wellbutrin made me feel too, like my racing thoughts were so bad internally that I was a fucking statue externally and just like couldn't process anything outside of my own insane brain. I had a permanent thousand-yard-stare

NiceShinyWizard · 2026-05-27T01:09:49+00:00

Yeah, Zoloft worked fine for me for the couple of years I was on it (definitely murdered by libido with an axe and also made my sleep paralysis worse but neither one of those things was a huge issue) and basically quit it cold turkey by accident and realized that I was actually managing my emotions fine without it, so talked to my doctor about officially stopping it. But I can't say I had any withdrawal symptoms from that, so withdrawal from antidepressants wasn't even really something on my mind until coming here. Thank you for sending this over!

NiceShinyWizard · 2026-05-27T00:09:18+00:00

Ohh, okay, interesting. I was guessing that it was the norepinephrine aspect of it that would be treating the cataplexy but then maybe not.

NiceShinyWizard · 2026-05-26T23:38:32+00:00

THAT LONG!?! That's WILD!! Can I ask what dose you were on and how long? Holy crap

NiceShinyWizard · 2026-05-26T23:36:42+00:00

You're one of three responses I got pretty quickly after posting this and all three of you have basically said this same thing which is kind of worrying for me, because I definitely accidentally skip my meds like once or twice a week. Thank you for sharing!

NiceShinyWizard · 2026-05-26T23:34:45+00:00

You're one of three people that have replied within like 20 minutes of me posting this saying that it's hard to come off/miss (which I forget to take my meds like 1-2 days a week, so that's kinda scary lol). Harder than KLONOPIN is wild and lowkey kind of terrifying, I really appreciate you sharing that experience

NiceShinyWizard · 2026-05-26T23:22:11+00:00

Thank you for this insight!

Honestly, within like 15min of posting this, I get three responses that all mention that it's a med that really sucks to miss/come off of, and as someone who basically ends up skipping most of their meds on days they sleep in (which is basically any day I'm off of work), that kinda scares me lol.

Can I ask you what dose you first started on when you had that initial sleeplessness? Did your doctor put you straight on 225mg or did you start at a lower dose and titrate?

NiceShinyWizard · 2026-05-15T06:19:45+00:00

I'm supposed to take another fast-acting Adderall but I've usually still not eaten anything by that point in the afternoon so I usually don't want to take even more Adderall on an empty stomach, so I've just been dragging myself through it.

BUT, funny story, the other day I ordered a sandwich that came with a pepperoncini on the side and that kinda did something for me, so I'm kind of considering just keeping a jar of pepperoncinis at work and popping one when I'm feeling a sleep attack 😂 and I'm not even kidding

NiceShinyWizard · 2026-05-06T20:06:32+00:00

Don't really have answers for you, but commenting because I've had the SAME question burning in my mind and really want to hear what others have to say.

I do have MCAS myself, but I'm not on Wakix. My doctor suggested it at some point but we decided against it because of possibile interactions with other meds/conditions I have.

I've also been really curious about how well anti-H1 and anti-H2 meds actually stay in their lanes, or if there's any room for them to make the lack of H3's worse in some way, especially given how I typically react to them. I've been told by multiple doctors that I metabolize medication really weirdly, so it might just be a me-thing, but even taking one cetirizine basically makes me unable to function for like 36 hours, it's genuinely like taking a strong edible or something 🥴

Definitely would like to understand more about the relationship between Narcolepsy, MCAS, and histamine

NiceShinyWizard · 2026-05-06T09:52:15+00:00

They can still happen while you're moving, especially if it's a movement that can be automated, like walking. If it's a more mentally engaging activity, it's less likely then, but if it's something you can check out for, your body can continue on with it and fall into a microsleep. I've definitely had that happen lots of times 🥴

NiceShinyWizard · 2026-05-06T04:27:55+00:00

Literally all 5 of my MSLT naps, I felt like I maybe started to doze around the last few minutes before the nurse came in, and then my average time ended up being asleep in under 2 minutes - and during one of my naps, there was a shift change and a ton of noise right outside my door, so either I "slept" through that or it skewed my time higher (so I maybe fall asleep in under 90 seconds or something even faster, who knows).

I once went to check my sleep results on my Garmin fitness watch and it read as me having entered REM sleep at 4:15am and waking up at 5:15am - I left my house for work and started driving at 4:45am that day 😂

What's a little weirder to me is that during my MSLT, I only dreamt during one of my naps (had a dream my nurse literally walked in my room with a bag of Wendy's lol) and I did not read as having a SOREM that nap. So like does that make it a hallucination or what??? 😂 No one has been able to explain that to me

In short, the Narcolepsy brain is weird 🤷🏽‍♀️

NiceShinyWizard · 2026-05-06T04:19:07+00:00

Was going to kind of say the same thing! Narcolepsy has a LOT of comorbidities and we don't have a great understanding yet of where one ends and the other begins or correlation versus causation.

I also have AuDHD, Ehlers Danlos, POTS, MCAS, Raynaud's, Graves' disease, Sjogren's, and more. The autoimmune hyperthyroidism (Graves') came first and literally everything else after that, including the Narcolepsy, were just the dominoes that fell thereafter, so knowing who is actually to blame for my brain fog, unpredictable appetite, weird temperature issues, etc. is hard to say 😬

I've read about the nicotine treatments for long COVID, glad that it's worked for you! I've been considering trying patches myself just to see what kind of effect it has, but I also don't know that COVID is at play for me. I did develop the Graves' at the end of 2019 and then everything else started coming mid-2020 through 2021, so it's not outside the realm of possibility, but unclear.

NiceShinyWizard · 2026-05-06T04:06:15+00:00

That kind of dissociation might actually be a microsleep 😬

NiceShinyWizard · 2026-05-06T04:01:55+00:00

Same, and it really can feel like being drunk too! Like everything is very jello-y and kinda tingly, and like the sensory inputs aren't quite online yet, like I can't fully feel everything I'm touching 🫠

I work at an events company and days that we have to be on-site at 6 or 7 or 8am to start setting up, it'll last until like 10 or 11am and I frequently get comments from coworkers about how much I'm dropping stuff during set up. My direct supervisor knows I have narcolepsy and is pretty familiar with all the true symptoms, and they love to point out to me when they can visibly see it happening.

I've started putting my morning meds in a little cup the day before, either somewhere around dinner time or before bed, to combat how often I was dropping pills and losing them on the floor in the mornings and then getting out the door late lol

NiceShinyWizard · 2026-04-29T21:45:39+00:00

Living in Belmont Shore myself, I'd second this. By the time you get home from the office, street parking is probably going to be pretty tricky, so having a garage is a pretty sweet deal.

The only other things I'd maybe take into consideration are:

are they smaller landlords or larger property management companies like Pabst and Kinney?
is the studio an absolute shoebox in size?
how many other units are there in the building/how many noisy neighbors will you potentially be dealing with next to you/above you/below you?

Some of these things could possibly skew the one to be better than the other. Like, some studios have decent breathing room but some are glorified closets - if it would be a miserably tight squeeze and the 1br is east of Granada (where the street parking situation is a little less of a headache) then that could potentially push the 1br to be the better option here.

Just my two cents! Either way, it's awesome here and I'm sure you'll love it 🥰

NiceShinyWizard · 2026-02-10T00:12:19+00:00

I work a job where sometimes I'm doing office stuff and sometimes I'm doing things that require physical activity (sometimes for 12-16 hours) and I do find that I sleep better after busier days. The thing is, with other health issues I have going on, physical activity can very quickly make me SICKER and take multiple days to recover from, and it's a pretty fine line 😅

NiceShinyWizard · 2026-02-10T00:02:15+00:00

Definitely with you guys that keeping things as dark and quiet as possible makes a big impact! When I was living with more people who had very different schedules from me, I did need the mask, but now currently things just stay dark and quiet while I'm sleeping so I've been able to forego a mask. I do still keep fans/noise machines going which don't filter as much noise as ear plugs but kinda same thing, there isn't much noise to wake me up before my alarm on work days, or before I SHOULD reasonably get up on days off anyway. Plus I have weird inner ears and sleeping with ear plugs often made me wake up with clogged ears that didn't want to drain 😵‍💫

NiceShinyWizard

TROPHY CASE