on cataplexy

When it comes to cataplexy I hear that ‘you’ll know it when you have it’. I also read that cataplexy can present itself with (very) mild symptoms and wonder, how would you know?

Recently I’ve had a few incidents which make me think I might have (mild) cataplexy.

A few times something small startled me and my knees and lower legs went wobbly. They suddenly and briefly felt like ‘not my legs’. I didn’t actually fall down and spent several minutes unable to move — that would have made it clear, and it would have put me straight into the ‘you know it when you have it’-category. Instead, I caught myself and the feeling went away. The last time I had the feeling my eyes closed, but I don’t really know.

Another time, I laughed and my jaw felt tingly (not pricking like when your leg falls asleep) and almost like I had a shot at the dentist. It didn’t hurt, it mostly felt ‘not quite there’ and heavy. It lasted maybe three seconds.

Another time I sat on the sofa, with my ankles crossed and watched something on youtube and laughed out loud, a lot. My legs felt funny, very tingly (not pricking) and ‘not there’ and when I tried to move them I couldn’t. It has some similarities to what I feel when I fall asleep on my arm and then my arm pricks and tingles and whatnot, except, it doesn’t hurt. At all. The sleeping on the arm hurts, or at the very least feels very uncomfortable. The thing with my legs, didn’t.

For me ‘you know it when you have it’ has the problem that I can always find another reason.

I could have not eaten well that day (I did, but maybe I should have eaten more and better because I had one of those days where the default amount doesn’t do it. Could happen!).

Maybe I got up to fast, and my bloodpressure couldn’t keep up (Not really, I didn’t get up shortly before in any of the above situations.)

Maybe I just didn’t sleep well (ok, I kid. Really.).

one more

I went to bed last night, not feeling overly sleepy. Usually I try to go to bed when I feel like I could fall asleep right away, because I don’t wake up so much.

I got comfy, set my phone and tracker to ‘sleep’ (I track the hours I spend in bed so I can tell the doctor) and made myself comfortable. I dreamt about war and horrible things and then I suddenly found myself back home, looking at the sky from my balcony (except, the balcony faced east, mine faces south). I saw a spaceship passing by, with lights and concluding it must be the ISS judging from the speed — the subject of ISS came up the day before, not such a leap. It had the same shape as an actual boat, with the pointy bit up front and the flat end. And it had lights. Suddenly I found myself in my bed again, looking at my closet — I suspect I opened my eyes briefly and my brain wanted to make sense of it all. I had also started counting because I realised it could not have been the ISS, unless it was crashing. I counted because I wanted to know how long before it crashed. I got to 15, and then all the lights flickered, my bed shook violently, I heard the sound of explosions and screaming. Lots of screaming, very close to me, in my ear. I felt terrified and couldn’t move. I just stared at my closet, hoping no-one would come out (happens mostly if I don’t close the door properly), wanting to cry but couldn’t and generally just wanting it all to go away.

It took maybe a minute, the screaming and explosions only lasted a second or two, the light went back to normal seconds after that, and most of the ‘episode’ I just lay there, staring at the closet and felling terrified. I feel relieved no-one came to ‘get me’, something I’ve hallucinated before. All of this seemed way more violent than any of my previous episodes. I don’t like it.

After I moved, cried a little and woken myself up some more I checked the time. 37 minutes since I had started my tracker.

Didn’t feel like it.

I took a nap in the afternoon and slept a total of 11 hours today.

tired of hearing it

I got ill years ago, and have heard plenty of strange things since then. Regarding my fatigue / tiredness I usually hear ‘Everyone gets tired!’ and how I ‘just have to push through!’. However, unfortunately, I can’t push through. I can push and keep going and push and push, but I never go through. Things only get worse. When I try too hard to ‘push through’ accidents happen. I’ll fall asleep while walking outside (literally, my head nods forward, my legs go limp, gravity does its thing). I’ll wake up instantly and sometimes I can catch myself, but usually I hurt my knees. I’ll set things on fire — no, not on purpose, purely by accident. My brain stops registering ‘threats’, I don’t seem to notice the harm in leaving a towel on the stove when I turn it on. Or a car heading towards me when I cross the street.

I can — partially — prevent this. No pushing. Ever. Limit stress. Strict sleeping schedule. Take naps. Eat well. Good sleep hygiene. No pushing — it needs repeating.

I don’t know how ‘tired’ feels for other people. What I see doesn’t match my experiences. People say they’re sooooo tired, and then go to a party for hours or see a movie in the theatre. They’ll drive cars, go to gymclass, go running/swimming/exercising/partying. They make dinner and do the dishes. They do a lot of stuff.

Sometimes I do stuff too. I can get a little hyper-active — or rather, a little wrapped up in pushing through because I want the fun damnit!

I don’t know if these people push through. I don’t know if they ever get to ‘through’. I think they do, most of the time. They seem to get to a point where they don’t feel ‘soooooo tired’ anymore. Most of the time.

I fall asleep during movies, and usually try to heat up food because my brain does not want to think about what to cook/eat. On a good day, I don’t burn myself. I wake up feeling I had many nights with only 2 or 3 hours of sleep and I cannot get more sleep, no matter how hard I try. I feel so exhausted, wanting to sleep more.

In reality I sleep 8 to 10 hours per day.

Less, and then the accidents start to happen again.


I have hallucinations with my sleep.

I’ve had them as a teenager, a couple of times per year, and now more frequent. More complicated. More worse.

Last night with the storm raging around my flat I decided I should plug up my ears. I don’t like doing that because the plugs hurt my ears when I wear them too often and it causes me to have stronger reactions to softer sounds the longer I wear them. I think I get more sensitive to sounds if I shield myself from it too much. That said, I do really need them when the BF snores (because that hurts my ears without the plugs). And last night, with the storm.

I know from experience that wind and stormy sounds trigger my falling-asleep-sound-hallucinations. I start to fall asleep and then suddenly, this noise happens and I think someone has broken my window and tries to get inside, when in reality, none of that happened. Just the wind blowing. These falling-asleep-hallucinations often consist of only sound. I think I hear someone call my name (my mother or my BF) and I wake up with a shock. Sometimes I think I hear the doorbell or the dog bark. Occasionally I feel someone tucking me in.

Last night threw in some interesting twists. I had the standard window-breaking and people yelling things at me. Actual yelling, I did not like that. And also someone or something shaking my bed. That hasn’t happened before, my brain seems to get more creative the less I believe.

I’ve had auditory hallucinations at least three out of the past seven nights, maybe four. I don’t remember, I should write it down.

I haven’t had any sleep paralysis with the really nasty hallucinations and I think those didn’t happen because I wear a sleep-mask. The nasty ones include Gollum on the ceiling (I don’t wear rings so why on earth would he stalk me…), someone in my closet, someone on my desk / chair. I wear the sleep-mask and I don’t see it when I wake up. But I still sometimes think someone got into my room. Without seeing them I just lie there, breathing, telling myself to wake up, trying to wiggle my fingers because they can’t see that and they won’t know I’ve woken up. Of course, by the time I can wiggle my fingers I have actually completely woken up and won’t find anyone in my room. If I don’t wear the mask, I’ll see them. I will blink my eyes and tell myself in my head to wake up. The blinking doesn’t really help, except for signalling myself I am sort of awake. Not entirely. I will try to speak or move, but can’t, and when I can, the person (or creature) has disappeared.

At first, these hallucinations scared me a lot, especially combined with the not being able to move. After a while I learned to check the dog. If I couldn’t hear her bark or react, or see that she kept on sleeping, I knew that I imagined it. That I just had to wake up more. They got less scary.

And then my brain adapted, by throwing in extra things. Whenever I can’t see the dog, I get these thoughts that ‘they’ killed the dog. Or I feel more things moving around on the bed. Or I feel like someone tries to choke me, even though I don’t see them near me.

Sometimes I don’t see them at all but I can clearly feel a presence on or near me. Touching me.

But if I can see the dog, and see her sleeping, I know I have to ride it out. Keep breathing and try to wake up.

never entirely awake

Years ago, when I had a busy day and came home, had dinner and then relaxed, I’d feel tired and would usually go to bed and sleep well.

These days, I wake up feeling that kind of tired. It feels like my range of tired has shrunk. Where I used to go from 0 (asleep) to 10 (fully awake and alert) I now seem to never get beyond maybe a 5? I never fully wake up, never feel fully recovered. Sleep doesn’t seem to do what it did before — refresh me. I never feel fully refreshed. Most times I don’t feel any type of ‘refreshed’ at all. I might feel a little less sleepy.

I didn’t sleep well as a child and as a teenager, but somewhere between my 20th and 25th (roughly) things changed. I used to lie awake for about 1.5 to 2 hours before falling asleep and then wake up at least 3 times during the night, but whenever I got to decide my sleeping-times I did feel rested. I did feel refreshed. At some point I started falling asleep faster. At some point I needed sleep during the day.

Before, I needed sleep during the day only when I hadn’t slept well (or rather, enough hours) during the night. At some point, I started doing brief ‘naps’ at work, in the bathroom. Not every day, maybe weekly. I don’t remember exactly when, but since I still had a job I guess that started about 10 - 12 years ago. I’d feel so exhausted and out of it and unable to concentrate and focus that I’d lock myself up for about 20 minutes just to sit there with my eyes closed.

I thought everybody did that, but it turns out, they don’t…


Last night I had trouble falling asleep. This doesn’t happen very often. BF snored as he usually does and the wax earplugs sat comfortably in my ears. It took a while before I realised my neck had turned cold and my joints ached too much to fall asleep.

buff infinity scarf

I got up, went downstairs and took some naproxen. I also fetched my Buff scarf and wrapped it around my neck. Usually I do this when I go to bed, and obviously, this time I forgot.

Didn’t take long to fall asleep after that.

I spent 8.5 hours in bed, and had some trouble getting up.

My eyes do their gluey thing ever two hours or so. When I close them they seem to stick and don’t want to open as easily.