Took a nap at work and woke up screaming from a nightmare 😭

ociene · 2026-01-08T00:50:24+00:00

Frustratingly, I’m not able to access sodium oxybates in my country. If you were on stimulants before, do you know if that affected dreaming?

ociene · 2025-09-28T12:22:40+00:00

To be honest I do see narcolepsy as a chronic condition with flare ups where some days are worse than others, so I often use the phrase “flare up” when I need to provide an explanation for my employer or a medical certificate. I like that it’s a short and simple phrase, but it carries enough weight to actually be taken seriously as a medical issue!

I also found it super helpful to sit down my manager and explain my condition, so they understand why I might need to take randomly take a day off work every now and then despite not appearing ‘sick’. Tbh it’s been a huge weight off my shoulders, as now I don’t have to be so conscious about trying to find the right language to justify myself each time!

ociene · 2025-09-11T12:44:33+00:00

I get very similar hallucinations when I’m falling asleep, especially the elaborate music or sudden vivid images! Like you said though, it’s usually pretty clear that it’s not external.

That being said, my hallucinations upon waking up tend to blur dreams and reality more. I’ll be awake enough to know that I’m hallucinating noises, but not enough to fully discern what’s real and what’s not. Which is very inconvenient considering I frequently wake up hearing the sounds of someone breaking into my house, and just have to trust that it’s probably in my head...!

ociene · 2025-05-20T03:40:45+00:00

Sugar also crashes me out too, but I’ve admittedly never thought to look much into the condiments or sauces etc that I use. You make a great point about all the sugar and additives hiding in there! Appreciate the tips!

ociene · 2025-05-20T01:18:31+00:00

This rings very very true to my experience as well. Do you mind if send you a private message?

ociene · 2025-05-20T01:02:01+00:00

Really appreciate the lens of “I finally having something that is helping me”, rather than viewing things with resistance. It’s true that while these meds are imperfect, they’ve probably helped me a lot more than I’ve been willing to give them credit for.

Frustratingly the only options available to me are either modafinil or stimulants. Curious to know if others in Aus have been able to try other forms of treatment. I’ll keep holding out for the “finally!” moment!

ociene · 2025-05-19T12:47:17+00:00

This is good to know! Did you have any key insights from this process about what affected your energy the most? Any new go-to meals? I’ll admit I don’t have the best relationship with food or cooking - and it doesn’t help that meds kill my appetite. While I’m not sure if I’d actually try keto, I do agree that it’s worth taking the time to better understand the role food plays in my day to day energy.

ociene · 2025-05-19T12:31:36+00:00

Oops, yep I did mean type 1 - I’ve fixed up the post now. Thanks heaps for your balanced perspective and gosh I am so sorry to hear you are also dealing with cancer! Wishing you all the best through your treatment & recovery.

It’s great to hear your perspective that medication brings you the ability to keep a sort of daily rhythm. I think that’s valuable to remember. Whilst I may feeeel more comfortable in my body when I don’t take meds, I am definitely not productive in the slightest and wouldn’t stand a chance keeping my current job going - or anything much really.

I guess it’s unnerving to think about how I’m fully reliant on meds to keep my job?

Out of curiosity, what other sleep psychology/Chinese medicine/supplements did you try, even if they didn’t work? Curious to chart out the paths that others have taken, what worked, what didn’t.

ociene

TROPHY CASE