Is this a narcolepsy thing?

[u/andersberndog]

I’m a teacher. On Monday I had a moment that lasted a second or two where I continued teaching, but it was almost like I was in the backseat, watching things happen. Very strange. I was able to quickly pull myself back, dropped out again for a second or two, pulled myself back again, and I was fine after that.

My outward self continued speaking, not missing a beat, but it was like I was a spectator. A quick Google search led me to the term dissociation. Not sure if that’s the right thing or not, though. Need to do some more reading.

I’ve never experienced anything like that ever in my life. Diagnosed as N2. Is this something that could be related to narcolepsy and/or possibly cataplexy? I was also coming down with something at the same time. I was losing my voice, sore throat, etc. Might be allergies, or some kind of virus. Went to the doc today, though, and tested negative for influenza B, covid, and strep.

I don’t know what’s going on, but those few moments were completely new for me.

I did see my PCP today for the cold/flu symptoms, but I didn’t bring it up. Still trying to formulate my thoughts on the whole experience first. I see a separate neurologist for narcolepsy treatment.

I consider myself fully treated on Xywav, but I do take Vyvanse for my comorbid ADHD. It helps a little as a mood stabilizer but provides no wakefulness. Also on Qelbree for ADHD, which is an SNRI.

I’ve asked this same question on the ADHD sub. Just trying to cover my bases.

Anyone ever have a similar experience?

[u/wad209]

Sounds like what happens when I microsleep although my recollection of what happened is usually much more fuzzy and dreamlike. I'd talk to your doctor to rule out other cases.

[u/MsFoxieMoxie → u/wad209]

I have this happen when I’m tired and it’s late at night and I am talking to someone… The conversation continues, and then I kind of get a little bit fuzzy… to the outside observer, it’s as if I just lost my thought. By the time I catch myself, the other person is usually looking at me in anticipation of what I’m going to say next, to continue my thought… And then I just apologize and confess that I have no idea what I was saying and that I drifted off and need to go to bed. It’s not great… But it’s pretty consistent.

[u/wad209 → u/MsFoxieMoxie]

No, this is EXACTLY what its like for me. Usually long, boring meetings (mostly before diagnosis) and I would be in literal shambles, drifting off mid convo and shit. OP seems to not think its microsleep.

[u/MsFoxieMoxie → u/wad209]

Same!! And I have type one narcolepsy… I went undiagnosed until I was 26. Staff meetings were AWKWARD!! 😬

[u/MsFoxieMoxie → u/MsFoxieMoxie]

I should note, I was diagnosed in 2008 and have been treated since. My condition is generally well managed, however it has continued to evolve. The experiences I have now are not the same as I did when I was in my 20s. There are times when I experienced knee buckling now, where I didn’t used to in the past. Particularly early in the morning, before my medicine has fully kicked in, and typically when I feel stressed (early morning holidays, school mornings, etc.).

[u/andersberndog → u/wad209]

Yeah, I know microsleep. This was something different.

[u/wad209 → u/andersberndog]

In that case I would speak to your doctor, since likely not directly related. Many of the medications can cause dissociation but it's pretty rare

[u/andydoody]

This sounds exactly like how I felt when experiencing depersonalization + derealization. It's very hard to describe but very uncomfortable.

https://en.m.wikipedia.org/wiki/Depersonalization-derealization_disorder

[u/andersberndog → u/andydoody]

Thank you! That fits really well for what I experienced. Also comforting to know that, even though it can present itself due to several pretty serious issues, it also happens very briefly to a lot of people.

There’s mention in the wiki of vestibular issues. I often had dizzy spells before I was treated, but that also fits with the head congestion I had with whatever it is I’ve been fighting off for a couple days.

Now that I have a little more to go on I can better watch for it happening again.

[u/andydoody → u/andersberndog]

Oh I'm so glad you found this helpful! When I first experienced a serious episode it lasted for 3 months (drug induced, don't smoke weed if you have these problems) and I was so scared because absolutely no one could understand what I was experiencing. If it's any reassurance, I haven't had an episode in years since I've learned to keep an eye on it!

[u/RepresentativeMall25]

I'm diagnosed N1 and I know this feeling all to well my friend. Before being diagnosed around 8 years ago I never knew why I felt like this so often. I remember asking my brother if he ever felt like this and of course he couldn't relate. It's like your stepping in and out of a walking dream. Sometimes, I feel more like an observer of my life. Sometimes it's much worse. When it's really bad, it's like I'm living in some kind of a murky dream that's also in another dream. I know that sounds absurd, but I suppose that the oft analogized "Layered Onion" would fit the bill.

[u/RepresentativeMall25 → u/RepresentativeMall25]

P.S. It sounds like your simply experiencing spells micro-sleep and automatic behavior.

I wouldn't worry about it, unless it gets worse. Hopefully, you won't progress to N1...

[u/andersberndog → u/RepresentativeMall25]

I wouldn’t classify it as being similar to a micro sleep at all, at least not that I d ever experienced before. I was fully aware the whole time.

[u/__aurvandel__]

Doesn't sound like cateplexy. Cateplexy is muscle weakness and usually doesn't affect awareness or cognition.

[u/Odd_Invite_1038]

Sounds like dissociation to me for sure.

https://pubmed.ncbi.nlm.nih.gov/33594925/

[u/andersberndog → u/Odd_Invite_1038]

Yeah. That’s why I questioned cataplexy, since everything I turned up kept pointing to N1. I’ve never had anything I’d call cataplexy (hence, N2), but that gave me pause.

[u/Franknbaby]

Yeah, it does sound like depersonalization. Happens to me when I’ve been overdoing it. You mentioned having cold/flu symptoms? It also happens to me when I’m having a head cold and/or on cold medicines.

Sounds like you need a break!

[u/andersberndog → u/Franknbaby]

Probably true. I’ve been pretty far behind at school for a while, but last Friday I made a lot of headway with a full teacher workday, and was just about as caught up as I ever get. I’d been coming in about an hour early and staying late a couple extra hours every day for a couple weeks. Hitting that right as I was going into the weekend, I’d have thought I’d be good, but then getting sick the following Monday may have hit me extra hard.

[u/SingerDue4540 → u/andersberndog]

As a fellow teacher, you are doing too much. Try to see if there’s things you are doing that can be streamlined or cut out entirely. You need to make a more balanced life for yourself. What you are doing is not sustainable for you or anyone really. We may never have a true 40hr work week but at least try to reduce how many you are putting in. It sounds like your body and mind are overtaxed. 

[u/andersberndog → u/SingerDue4540]

Thanks for the sentiment. Unfortunately, I’m a band director. Only middle school, so a lot more relaxed than my last job, but even with that, I have twelve preps. 6 rehearsals/day on an A/B schedule. Used to teach in a high school with competitive marching and jazz programs. The extra time is fine. Just working through odds and ends that there’s no time to tackle during the day.

Spending the extra time is actually me being kind to myself. If I didn’t do it and sent myself home when I’m allowed to leave, my day-to-day would be 10 times harder.

This is an improvement. High school used to be 80 hour weeks in the fall, 60 hour weeks the rest of the year. That was pre-diagnosis though. Looking back, “yeah, that’s why that sucked so bad.”

[u/That_Plantain7435]

Did colors look different? Did you feel like you were in an altered state, like almost high?

[u/andersberndog → u/That_Plantain7435]

Not really. I think colors were the same. The best I can describe it is like I said. It was just like I was in the backseat for a couple seconds.

[u/Synecdochic]

Automatic behaviour, but really brief?

[u/andersberndog → u/Synecdochic]

For me, automatic behavior was always with microsleeps, and I’m not aware in the moment. I was 100% conscious through the whole thing.

[u/foreveramoore]

I have bipolar as well and experience this sometimes when me meds are off. I hate it.

[u/1quirky1]

I experienced something like this before I was diagnosed. The doctors were guessing at causes and thought I had depression so I was prescribed paxil. That medication messed me up so much that I had that spectator disassociation thing happening.

[u/Hangry_Dragon_]

I have something similar and in my mind it makes sense but my kid says I'm just saying gibberish, like sleep talking, but to me it feels like I'm saying actual things.

[u/RepresentativeMall25]

I just did a real quick search I hope this helps and doesn't alarm anyone..

In narcolepsy type 2, hypocretin levels are often normal, and its causes are less clear. Some expertsTrusted Source theorize narcolepsy type 2 represents the early stage in a narcolepsy spectrum of progression, where hypocretin neurons are minimally affected but may continue to deteriorate.

Not everyone diagnosed with type 2 narcolepsy goes on to develop type 1 narcolepsy, though.

The inconsistency in diagnostic markers suggests there’s a more complex pathology in narcolepsy beyond the hypocretin system.

https://www.healthline.com/health/narcolepsy/type-2-narcolepsy#causes

[u/andersberndog → u/RepresentativeMall25]

I’ve had narcolepsy since my teens, but not formally diagnosed until my mid-40s. 50 now. The only changes I ever experienced over all that time was finally getting relief on Xywav.

[u/WordGirl91 → u/andersberndog]

If you’re 50 now your symptoms could be changing due to hormonal fluctuations. I’m on a BC that prevents my hormones from fluctuating during the month because every time they did, they would trigger both my narcolepsy and my pain disorders and I’d crash for about a week until they leveled out again only for me to crash again two weeks later when they’d fluctuate the other way. Hormones do weird things sometimes.

[u/andersberndog → u/WordGirl91]

Thank you. I hadn’t really thought of that. I’m a dude, so hormonal fluctuations for me now shouldn’t swing anywhere near as hard as puberty, but definitely something to consider as time marches on.

[u/WordGirl91 → u/andersberndog]

Males go through andropause around the same time as women with menopause. Admittedly I know nothing more than a quick google search tells me so I have no idea how much some of those hormones fluctuate but even tiny fluctuations can do weird things. Hormones just kinda suck sometimes lol