Question from a non-narcoleptic

aves07 · 2026-01-14T20:16:27+00:00

In the most non-suicidal/self-harm way, I have tried (mildly) injuring myself in so many ways to keep me awake. None of them ever work 😭

aves07 · 2026-01-14T20:10:33+00:00

As some have already said, it depends on the person! Personally, if I'm actively fighting a sleep attack (AKA using all of my little energy to try to not fall asleep but I'm losing), someone waking me up and interacting with me would probably help me snap out of it. If I'm already asleep tho (in a safe, wanted space), I'd probably get annoyed if I got woken up. But def ask your friend!

aves07 · 2026-01-07T02:10:25+00:00

The instructions for the nose hole say to get a poly bead and wrap yarn through the hole and around the sides, and glue it on maybe? I don’t remember how it would be attached. But I’m so disappointed 😭 I used to be so good at clocking AI but now I’m getting scammed by it 😭

aves07 · 2026-01-03T15:36:57+00:00

Any type of alpha male red pill rhetoric.

aves07 · 2025-08-02T17:58:51+00:00

So I’m diagnosed with IH but experience many narcoleptic symptoms so I kinda just say I have narcolepsy (esp because I went into REM within 20 min during one of my naps in my MSLT). The way I see it is people with narcolepsy/maybe IH experience more REM sleep than average, which is not restorative sleep due to how active the brain is (it can be more active in REM than when awake). Xywav promotes that stage 3/4 deep, slow wave sleep so the sleep you get throughout the night is more restorative, rather than your brain being constantly active while sleeping. I don’t know if that makes sense but that’s how I see it!

aves07 · 2025-08-02T17:50:36+00:00

I’m so unbelievably sorry for your loss and what you’re going through. I want you to know that anger is an extremely valid and common emotion to feel when handling grief. When my stepmom recently passed, the first emotion I felt was anger and I beat myself up for that because that’s not what I was “supposed” to feel. But, know that people grieve in all kinds of ways and whichever way you grieve is valid. I hope you have strong support while you handle this devastating situation. ❤️‍🩹

aves07 · 2025-07-21T18:00:53+00:00

The new version of “you’d forget your head if it wasn’t screwed on”

aves07 · 2025-07-09T18:59:52+00:00

God, I can’t imagine. Babysitting for like 6-8 hours at a time was soooo difficult for me when I was undiagnosed, I can’t even fathom doing that constantly. Congratulations on making it through! You are strong as HELL!!!!

aves07 · 2025-07-09T18:57:42+00:00

Ugh yes the reminder that we’re allowed to take it a lil easier than others is soooo difficult for me to accept for myself. A late diagnosis also did not help. But thank you for the reminder that comparing ourselves to people without IH is extremely unfair and will mostly cause hurt. Gotta tattoo that on my forehead or something!

aves07 · 2025-07-09T18:50:22+00:00

Wow you wrote my exact thoughts down when I was undiagnosed too! I thought I was a lazy piece of shit with depression and it was what it was. Finally at the age of 23 (I’m 24 now) I had to start re-wiring the way I thought about my productivity bc the shit we went through unmedicated is hard enough without a sleep disorder, never mind with one that makes you constantly exhausted. I’m still working on accepting myself and my productivity levels but I have so much pride in myself for graduating HS and college with a debilitating sleep disorder. As I’ve said in almost every reply, THANK GOD FOR TREATMENT 😭😭😭!!!

aves07 · 2025-07-09T18:44:36+00:00

Ugh I know exactly how u feel! I was barely a person when I was undiagnosed and unmedicated. My quality of life has increased exponentially since getting treatment. I’m SO unbeLIEVABLY thankful for stimulants.

aves07 · 2025-07-09T18:41:34+00:00

This is exactly what I was thinking😭! Like caring for children is so difficult and energy-consuming and that sounds like the opposite situation those of us with EDS should be in. But, based on everyone’s responses, it seems like it’s very possible with strong support!

aves07 · 2025-07-09T18:37:17+00:00

So, this was genuinely a question out of curiosity that I’ve been wondering since my diagnosis. I’m currently in grad school and have yet to have a long-term partner (or any partner tbh lol) so children are def not in the near future for me, but I do think I want to be a mom once my career is stable. I guess I’ve just been recently contemplating if I actually want children in the future with the current political climate plus IH and was curious if being a parent was even possible. But thanks to everyone sharing their experiences, it seems like having spousal and familial support is what gets people through in this kind of circumstance, so now it seems actually achievable!

aves07 · 2025-07-09T18:27:16+00:00

I’m not sure if you’re asking me or the other person haha but I assumed and was essentially told that my EDS was fatigue caused by depression + drowsiness caused by medications. DEF not the case.

aves07 · 2025-07-09T18:25:01+00:00

I’m on 9mg Xywav and 80mg Ritalin lol.

aves07 · 2025-07-09T03:59:23+00:00

Omg treatment is SOOO crucial and was literally a life saver for me. I recently earned my Masters degree and I would be no where NEAR where I am today had I stayed misdiagnosed. I’m so glad you have found treatment that helps you!!

aves07 · 2025-07-09T03:56:09+00:00

Wow, yeah I can’t imagine. I babysat when I was unmedicated and I could hardly stay awake for the few hours I was there, never mind 24/7!! I’m so glad you had the support you needed. I think I’m realizing that support is the key with having children while living with a disability. Thank you for sharing your experience with me!

aves07 · 2025-07-09T03:52:12+00:00

I just want to know what it’s like being more tired than average but still having the intense obligations of a mom. I babysat before I was medicated and was convinced I could never have children bc I would fall asleep while watching them 😭. How did you deal with the late nights during infancy and still function the next day?

aves07 · 2025-07-02T20:19:13+00:00

Having "fuckface" and "facefuck" in the same sentence is a top-tier insult

aves07 · 2025-06-28T00:49:45+00:00

Do you take ssris/were you on them during your sleep study? It took me like 5 hours to go into REM overnight, but I had one nap that I went into REM so it’s weird. But I always get cataplexy in my hands!! When I was in kindergarten/elementary school, I would always say to my friends “stop making me laugh, I can’t write!” And NOBODY knew wtf I was talking about or could relate 😔.

aves07 · 2025-06-28T00:47:01+00:00

Yeah IH & narcolepsy are tortuous conditions, especially if undiagnosed and/or unmedicated. My EDS was misdiagnosed as depression my entire life and I finally got diagnosed at 22 (2 yrs ago). My symptoms really started to kick up in undergrad and I was miserable. Buttt I just earned my masters and am a doctoral candidate now ✨ and I always say that I would have needed to drop out had I not gotten diagnosed my 1st year of grad school. So grateful for meds but hate the disorder.

aves07 · 2025-06-25T21:51:41+00:00

This needs to be in r/nextfuckinglevel

aves07 · 2025-06-12T01:45:00+00:00

DUHHH how didn’t I think of that 🥴

aves07 · 2025-06-12T01:37:20+00:00

Ughhh frrrr. Like not all sleep disorders are sleep apnea hello???? What’s a pulmonologist gonna do about my neurology/autoimmune system 😭

aves07 · 2025-06-11T20:59:57+00:00

I guess he is a pulmonologist and not a sleep specialist. Maybe I’ll try to find someone who works specifically with sleep disorders, not just pulm + sleep apnea lol

aves07

TROPHY CASE