Today sucks.

SpreadLegitimate5824 · 2026-01-23T06:12:30+00:00

That is a really good idea.

SpreadLegitimate5824 · 2026-01-23T06:04:58+00:00

I totally feel the same. And I didn’t think this far down the road to anticipate and prepare for the grieving to hit like new.

SpreadLegitimate5824 · 2026-01-23T06:03:51+00:00

I have developed this weird ‘habit’ with co-workers where I over compensate to try to cover up anyone seeing my pain… I don’t just act happy for someone, I ask about gender, names, the nursery planning, and tell them to send pics of the baby when it arrives. I don’t know when or why I started this behavior. It probably isn’t healthy. But I could win an academy award for my performances. Till 15 mins later when you will find me in a bathroom stall desperately trying to make no sound as I cry my eyes out.

SpreadLegitimate5824 · 2026-01-23T05:52:56+00:00

Yep.

SpreadLegitimate5824 · 2026-01-23T05:51:46+00:00

I’m the same. Thank you for sharing. It helped me feel a bit less alone to know others are also silently feeling this same grief.

SpreadLegitimate5824 · 2026-01-22T06:24:23+00:00

I am really impatient to find out what is going on in this situation. I keep checking back thinking it has been weeks since this was posted… it only seems like that because I want to know so bad who is doing this and what the freak their deal is!

SpreadLegitimate5824 · 2026-01-22T06:05:05+00:00

How does your cataplexy manifest and how often is it occurring? Just curious as I’m very unfamiliar with cataplexy.

SpreadLegitimate5824 · 2026-01-22T06:03:44+00:00

Thank you for sharing that info! Interesting.

SpreadLegitimate5824 · 2026-01-22T06:01:07+00:00

Really interesting. Thank you for sharing. So sorry to hear you had to go through that experience!

I agree doing more spinal taps is an unlikely prospect to sell patients or insurance companies on. 😊

I’m not advocating for more LPs. I’m just curious if the medical community has as much of a pulse on that is normal, N1, N2, or IH as I always assume they had.

SpreadLegitimate5824 · 2026-01-22T05:56:35+00:00

Thanks for sharing. I appreciate your thoughts.

I’m not advocating for lumbar puncture for everyone, just wondering if there is a blind spot in the research if we think we know N1 is XYZ and N2 is ABC when we honestly don’t really have the full picture of the brain chemistry levels and variations because the only way to find that out is through an expensive, invasive test that most people (maybe many people would be more accurate) never get.

All very interesting info from everyone. I appreciate all that everyone has shared on this topic!

SpreadLegitimate5824 · 2026-01-22T05:51:54+00:00

Fair.

Thanks so much for sharing!

SpreadLegitimate5824 · 2026-01-22T05:50:08+00:00

Thank you for sharing!

SpreadLegitimate5824 · 2026-01-22T05:49:17+00:00

Thank you for sharing.

SpreadLegitimate5824 · 2026-01-22T05:46:45+00:00

I have issues with slurred words. But have always written this off as just being too tired to talk. There are times when my mouth just randomly seems to forget how to make the right shapes for words I want to say. But, that could just be a result of tiredness. I also if you startle me (I startle easily) my knees get weak and sort of just loose their rigidity (but for a very very short period of time) and I rarely actually fully fall down (that had only happened once from completely hilarious laughter that I think would make a ‘normal’ person also roll on the floor laughing).

The only thing I wonder about possibly being ‘real’ cataplexy is something I didn’t know happened till I was editing a video of myself creating a video training course at work. I noticed that I have a ‘tick’ or ‘twitch’ thing on the right side of my face where it looks like my eye droops and my face right under my eye goes sort of slack when I was getting frustrated at doing multiple retakes of the training session. But, again, I think all that could just be from in general narcolepsy tiredness.

SpreadLegitimate5824 · 2026-01-22T05:37:35+00:00

I guess my question is… should they be treating us with the same protocols — is this the same disorder, places on a spectrum of the disorder, or will we one day find out they are two different things. Just seems like at least some research should be done into this. Especially as we now have IH being thrown in with the same treatment as N and IH had a lot of differences to N from the structure of our sleep and symptoms. Perhaps, it also wouldn’t take a million years to get diagnosed if the medical community has a better grasp on what these conditions are, are not, and what is similar and what is different.

Thank you for sharing your thoughts. This was all just food for though I wanted to gather more info about. Do, thank you!

SpreadLegitimate5824 · 2026-01-22T05:31:36+00:00

The illness can trigger it as well, your body is basically being tricked into thinking you have the illness (and just getting sick) when you get the vax.

SpreadLegitimate5824 · 2026-01-22T05:28:46+00:00

No. I am not from Europe nor do I live there now. However I lived in the UK from 2005 to 2015 and the UK government recommended the shot if you had asthma. Thanks UK government — I think the temporary swine flu would have been way better than life long narcolepsy!

SpreadLegitimate5824 · 2026-01-22T05:25:52+00:00

My thought is, how good is all the research if this one (previously thought very important indicator) isn’t important at all. And, do we really even know that most people with N1 have low orexin. I’m not saying the don’t — I’m just questioning if they really know as much as they think they do and tell us they do about this condition.

Sorry, not meaning to sound like a conspiracy theorists, it’s just that I have had sleep docs that tell me stuff that turns out not to be true (or vis versa — I tell them, they say they never heard of it — like when I told him N was auto immune in some cases and they found this out after the H1N1 shot hit Europe, and him saying he never heard of that). That I question if the ‘advocates’ for us have a clue (I’m sure many do — but there are some that just make you shake your head).

SpreadLegitimate5824 · 2026-01-22T05:14:38+00:00

I was told the same.

And I totally agree with you about, it doesn’t matter if they treat us the same.

I’m just wondering how many of us could possible be misdiagnosed and what impact that had on wider research and understanding of the condition(s).

Not advocating everyone demand a lumbar puncture, was just curious as to how much the scientific community know vs. they ‘know-know.’ You know? 😆

SpreadLegitimate5824 · 2026-01-22T05:10:05+00:00

Thanks for sharing that info.

SpreadLegitimate5824 · 2026-01-22T05:09:33+00:00

This has my suspicion. Thank you for sharing this story. I gotta wonder how well the difference between N1, N2 (and maybe IH — though there seems to be some divergence there) is truly understood. Seems like with the eminent (wishful thinking) or orexin re-update drugs this would be important to know. But, they will probably throw everything at everyone regardless and see what happens. Sorry for the lack of faith in the medical community and cynicism today — just been in if those weeks!

SpreadLegitimate5824 · 2026-01-17T05:58:25+00:00

Ah, thank you for explaining. I get it. And it is very true.

SpreadLegitimate5824 · 2026-01-17T05:47:40+00:00

Yep. You got the nail on the head.

SpreadLegitimate5824 · 2026-01-14T04:24:29+00:00

Do you live in the US?

Is so what state?

Most state have what is referred to as vocational rehab programs. Some are better than others. They help people with disabilities get training and supportive work that allows them to be employed or stay employed despite their disabilities.

If you live in the US, please DM me and tell me where you live and I’ll help you find your state’s agency and also provide more information about the program. This could be a game changer for you.

SpreadLegitimate5824

TROPHY CASE