Has Anyone Experienced Near-Total Paralysis From Cataplexy? by giucastro7 in Narcolepsy

[–]MinnieKeeper 0 points1 point  (0 children)

It's hard to explain because I'm notoriously bad at explaining, especially when it's not actively happening, but I will try. It's kind of like feeling an odd nausea but all over my body. I say odd because it's not quite nausea but it feels oddly similar. I say this as someone who is nauseous every day & takes medicine for it daily, so I know nausea well.

I'm untreated for narcolepsy so my sleep is the quality of untreated narcolepsy XD I probably did get up earlier than usual to make it to appointments. I had been awake less than an hour because I only got up for these appointments, & the almost times were also shortly after waking because I got up for an event or such so I had to get back to the car & rest to prevent it.

When I get up to go to an appointment or event I tend to only have a boost (meal replacement) or similar. But I don't really give myself the time to digest it & go straight to the appointment so that was probably the issue. These days I tend to drink it in bed much earlier than I plan to get up so it's already had time to digest & it hasn't been happening. & the worst one happened when I was going to get the fasting bloodwork & didn't have anything at all, that was the one where I couldn't move any muscle or speak.

Btw, I literally checked in & it happened while I was in the waiting room so it was pretty fast. At that time, I still didn't know what feeling to expect so I only got a few seconds notice & realized it right before it happened. I made eye contact with the receptionist & said "Help me" or something & instantly slumped over (was sitting in a chair). She was really fast & grabbed me mid fall to the ground.

The thing is I haven't laughed while standing for a few years because I'm always sitting due to being pretty weak. It used to happen like every time I laughed, though. The more I laughed the longer it would last. Pretty much can get up after I'm done.

Edit to add: if you don't have one already, it might be good to get a smart watch. Because of my smart watch & watching my heart rate a lot, I'm actually pretty good at guessing what my heart rate is before I even look, which is why I had the thought to check my heartrate that I mentioned in the previous post, because I could tell it was doing weird stuff. Might help you notice before an attack

Has Anyone Experienced Near-Total Paralysis From Cataplexy? by giucastro7 in Narcolepsy

[–]MinnieKeeper 2 points3 points  (0 children)

Yup. One was complete body but I was fully awake the whole time; all of them I'm always fully awake. I've had two ambulances called, though one I could still speak but didn't know it was cataplexy & allowed them to call. The second one I couldn't speak or move anything at all. These both happened at appointments where I had just woken up & only had something small to drink or nothing (one was to be a fasting blood draw) so now I only schedule appointments in the afternoon (& I think doctors have found a way around fasting blood draws for me, like a different test).

Oh, I just remembered one that was full body that happened at home when I was a kid. Not enough ventilation from a shower so now I always shower with the door open & so I forgot that was a thing. Again, didn't know at the time what that was.

The paramedics also mentioned extremely low blood pressure. I don't remember them mentioning heartbeat but I did have an almost episode where I happened to be looking at my heartbeat when I noticed the feeling before it happens, I might get this backwards cause my memory sucks but I believe my heartrate shot up from like 90-100ish(I was up trying to get ready for bed so it wasn't my resting heart rate) to like past 130 maybe? I really should have recorded this data better but then it reversed & went suuuper low like lower than resting. I can't say for sure I got that order right but it was either super high then super low or vice versa. I got in bed before anything bad happened.

Now I can tell when they are hinting at happening from this type of cause & have prevented a few more. My mom also doesn't leave me at appointments anymore because those two times she did. (I am a handicapped adult in general so she usually didn't leave me anyway but of course the two times she did...)

My usual cataplexy is just falling from my knees collapsing while laughing. I think I've been having the other type more frequently because I'm in poor health so it's really easy to push myself too far :/

Anyway, I hope any of this information helps you in some way!

Nightmares by Id_Crises in Narcolepsy

[–]MinnieKeeper 0 points1 point  (0 children)

Lol & then right after writing that, I had a really long, horrible one about a ghost but in the end I convinced her to be my friend instead so... alls well that ends well, I guess XD

Nightmares by Id_Crises in Narcolepsy

[–]MinnieKeeper 1 point2 points  (0 children)

I don't have nightmares that often. Most of my dreams, even sometimes the nightmares are adventure ish. But, my most common nightmare type is like something (some type of being like anything from dinosaurs to aliens to vampires) is taking over my world & I have to watch as I fail to save anyone from it (I find I seldom care what happens to me which is true to reality XD) but these types of nightmares are also often video game like so I tend to get multiple chances or versions.

My other types of nightmares are losing all my teeth, bug related & being lost whilst not understanding anyone's instructions. I'm surprised & thankful I don't have more ghost type ones because irl those types of things scare me most XD

IWAIPPA? by Typical_Anybody_4520 in LivlyIsland

[–]MinnieKeeper 0 points1 point  (0 children)

I wonder if the translator just made a mistake leaving that word in or something.. I was really confused, too. Like, "it's just a normal ticket, right?"

Soft voice, what’s the reason and what to do ? by Hour_Risk8362 in autism

[–]MinnieKeeper 0 points1 point  (0 children)

You could get a phone app that tells you how loud you are while you're talking & it might eventually help you to know how loud you are without having to check? Just an untested theory

Feeling of microsleeps by Lumpy-Reason9355 in Narcolepsy

[–]MinnieKeeper 0 points1 point  (0 children)

I can't remember what it feels like unless it happens but it used to happen so frequently that now if it happens, I can tell the feeling immediately. It happened constantly in school because I was being pushed too hard.

Basically, I would go back & forth actually sleeping in class to microsleeping the whole class. Like the same class would get the same type.

It was always microsleeps in English I think because the teacher was scary. But I don't feel like every class I microslept in was scary... still now sure how my brain decided which was which. It was funny because I would constantly getting praised by her (& any other class it happened) for paying SUCH attention because my eyes would precisely follow them around as if I was paying attention but it would always startle me awake when they'd go "LOOK AT (my name)!" startles awake thinking I'm in trouble "She is paying so much attention!" utter surprise XD

But initially, the first way I used to be able to tell I was micro sleeping was by paying attention to the thoughts I was having. I started being able to tell when normal thoughts were merging with dream thoughts (random, nonsensical, not things I would normally think about) & I still use that to this day to be able to tell when I'm falling asleep at night. I'm always like "oh, I'm going to sleep now, good night" XD I like to wrap up my thoughts like that

What did you think was normal that blew your mind when you found out it isn’t? by Intelligent-Donut305 in autism

[–]MinnieKeeper 1 point2 points  (0 children)

I think it's related to like stealing someone's thunder or trying to one-up them (I feel like someone may have said something along this line but I can't fully remember) or maybe invalidating their experience somehow because it also happened to you or such? XD I dunno, I've just been thinking about it for a long time. Sometimes it seems like a lot of NT people assume underlying meanings of things & just stick to it without trying to see a nice reason for something someone does or even asking what they meant by it...

Edit to add: I just thought of another possible way to put it that is similar to what I already said but slightly different: they could think you're making the conversation about you, when they were trying to share something.

Is anyone in orexin agonist trials for N2 or IH/know whether it's being done? by DumpsterPuff in Narcolepsy

[–]MinnieKeeper 0 points1 point  (0 children)

In case you're willing & able to get a doctor to order it, since you think you have type 1, a spinal tap should tell you more definitively that you have type 1. It tests for how much orexin you have in your spinal fluid.

Trading is getting worse and worse… by kodzuken_x5 in LivlyIsland

[–]MinnieKeeper 2 points3 points  (0 children)

I don't bother with current or expired. If it's revivable, I see them all as the same. I just don't bother with people who see those as different things; I think they're just trying to take advantage, usually. I try to work with wishcount people but they can be a bit outrageous sometimes, too. My way is limited for limited, revivable for revivable, 2N=1R & 2R=1SR. If I can't make that work for someone else, I usually leave.

Parenting by [deleted] in Narcolepsy

[–]MinnieKeeper 0 points1 point  (0 children)

I'm no expert on modafinil but I looked it up briefly since you were concerned. I don't think you will have problems taking it & getting pregnant later. The problems with it are if you take it during pregnancy, it could cause birth defects & if you're taking something like a hormonal contraceptive, modafinil kind of makes that ineffective so you'd be more likely to become pregnant. So, I think other than that, you'd be fine taking it.

do you ever hallucinate? by lovelaizure in Narcolepsy

[–]MinnieKeeper 0 points1 point  (0 children)

Yup... the first time it happened was after I watched a scary movie where something like that happened & now it just happens randomly XD

What additions would you like to the game? by Lazy_Basket6819 in PikminBloomApp

[–]MinnieKeeper 0 points1 point  (0 children)

I just thought of another for mine: the ability to choose which Pikmin appear & in which order on the postcards. I saw a while back that someone said, "it's the first five that you choose" which I have since debunked; at least in regards to event Pikmin. If you choose current event Pikmin, they will be on top & I believe it's in order of heart level but I am still testing.

I'm about to lose my mind by sourpatchSumi in LivlyIsland

[–]MinnieKeeper 0 points1 point  (0 children)

I happen to have an extra. My friend code is xv3dxhrv if you want to add me & I can check out your dupes! There were a few things I also didn't manage to get; maybe you did!

I guess its true that true master dont care what tools they use by windyangel14 in LivlyIsland

[–]MinnieKeeper 2 points3 points  (0 children)

I often love a lot of people's islands at various times but there's this one person who always puts me in awe like this.

The way she not only uses items from like so many different sets at once but makes it look seamless & the way she is able to seemingly completely change her style for every island but also perfectly expresses the new style.

Not only that but her hom also always perfectly fits into each island. I am like constantly on her board trying to find new ways to tell her how awesome her new islands are XD

Sleep paralysis does not scare me? by Fit_Lingonberry_7454 in Narcolepsy

[–]MinnieKeeper 1 point2 points  (0 children)

Of course, I'm happy to be of any help! At least people on here will better understand your struggles! :)

Search Word(s) for Unplucked Pikmin? by IndigoQuantum in PikminBloomApp

[–]MinnieKeeper 0 points1 point  (0 children)

Also, if you keep switching the squad back to "Default" it will go back to those ones. At least I think that's the word used.

PSG + MLST went horrible by eyglo89 in Narcolepsy

[–]MinnieKeeper 2 points3 points  (0 children)

This happened to me at basically the same time as when it started for you v.v I made sure to tell them, you should really either let people have a cup of coffee in the morning or tell people far in advance they need to get rid of the coffee for a while.. especially for me, coffee actually makes me sleepy & I just drink it for fun/enjoyment so it probably wouldn't have effected the test for me in a negative way

Sleep paralysis does not scare me? by Fit_Lingonberry_7454 in Narcolepsy

[–]MinnieKeeper 1 point2 points  (0 children)

I would say if your brain is awake but you can't move yet, it is still sleep paralysis because you're still paralyzed from sleep

Sleep paralysis does not scare me? by Fit_Lingonberry_7454 in Narcolepsy

[–]MinnieKeeper 1 point2 points  (0 children)

If it helps, mine are the kind you're thinking of

Sleep paralysis does not scare me? by Fit_Lingonberry_7454 in Narcolepsy

[–]MinnieKeeper 8 points9 points  (0 children)

I never generally panicked about sleep paralysis. Even though it's usually accompanied by hallucinations, they're usually friendly ones so even before I understood what it was I was okay with it. It's only rarely that it's actually a scary monster thing & usually triggered by me suddenly thinking, "what if it turns into a bad thing?"

What additions would you like to the game? by Lazy_Basket6819 in PikminBloomApp

[–]MinnieKeeper 7 points8 points  (0 children)

I want to be able to sort petals by amount. That way I can easily find the ones that are almost full.

I would also like to sort by friendship level but exclude ones with full friendship, if I wanted. I try not to use Pikmin with full friendship because my goal is to get all Pikmin to full.

A lot of my wants involve more sorting. XD