Fridays are my stimulant-free day at work. I discussed that with my employer back when I was first diagnosed with narcolepsy and starting the modafinil (ProVigil) as I figured taking Fridays, Saturdays and Sundays off would give my body almost as many days off the medication as on it, to keep me from developing a tolerance and to give my nervous system a break. The modafinil never really did work very well for me, and recently I was switched to Adderall – which made taking the stimulant medication as infrequently as I could get away with even more important to me.
Last week I broke that rule, trying to catch up a backlog of work that had built up in the months that I was dealing with the moving chaos (I had stopped the modafinil and was off any sort of daytime stimulants during that time) and the stress this past election has caused. This week, even on the meds, I had a few days where I could feel a sleep attack, suppressed enough that I could fight it off but hovering around the edges, so I should have known it would catch up to me on my ‘med-free’ day.
The first part of the morning didn’t go too bad at all; I was a bit sluggish, but mentally alert enough, but by 11 AM or so I knew I was in trouble. I tried moving around as much as I could and even getting snacks out of the vending machine to try and stay alert, but it was horrible, and I wound up leaving work an hour and a half early, hurrying home to stumble into bed, and sleeping for an hour and a half. I am very fortunate to have a job where I have that luxury.
I don’t think I have mentioned my sleep attacks here yet. I’ve had them, albeit in a less extreme form, at least as far back as my teens; I can remember struggling to try and stay awake in class and sneaking off to the library research cubicles to catch a nap on my lunch, by the time I was in high school. It was (and is) an awful sensation, sitting in a room full of people trying to discretely fight off a crushing wave of drowsiness. My eyes would be trying to roll back in my head and sometimes I’d lose control and nod off for just a split second. Then my head would jerk, my neck would whiplash back, and there’d be the embarrassment of getting berated in front of the class if a teacher caught the sudden movement and noticed me.
Sleep attacks bring numbing brain fog and my whole body feels heavy and lifeless. When I am walking it’s like I am trying to move through molasses and it seems like it’s taking forever – moving sloth-like – to get from one place to another. My joints feel numb and useless, even my lungs feel vaguely achy and heavy, like it’s too much work to take more than shallow breaths. If I’m sitting at a desk it feels like sheer torture to try and keep working, to constantly try and re-focus on what I am doing and force my arms to move, my eyes to stay open. If I’m in a social situation, such as a meeting at work, it’s even worse, because I have to try and fight the sleep attack and mask it at the same time.
My tinnitus and visual snow are way worse when a sleep attack is coming on and I may sometimes have numbness or tingling in my fingers. My face will feel slack, but at the same time my forehead may feel ‘too tight’.
Sleep attacks make me confused, stupid and dangerously clumsy. This is how dishes get broken, things get spilled, strange mistakes get made. Surprise! Orange juice my coffee! And good luck finding those car keys tomorrow, bet I’ll never think to look in the freezer. Spells of ‘automatic behavior’ and missing time happen when I am in that state.
I slur my words and can’t make coherent sentences. I probably look drunk to someone who doesn’t know what’s going on. Speaking of being drunk, I have learned to be very careful about drinking alcohol because it makes the sleep attack automatic behavior episodes more likely and more dramatic. One time it even caused a pretty bad blackout, though, in retrospect, my good friend Asperger’s also played a part in what happened then… I’ll save that story for another time, I’ve never written about it and it still scares me to even think about it.
The animals have learned to recognize the signs and give me a wide berth, so that they don’t get stumbled into or stepped on. My partner will usually shoo me out of the kitchen and tell me to go take a nap; you’d think I’d have the sense to go on my own by now, but a lot of the time I try to fight it off, not willing to lose that hour (or three) of my day, even though the nap almost always fixes me.
There is one type of sleep attack that occurs where my mind stays reasonably sharp, but my body goes almost completely limp. Those tend to come on kind of suddenly and don’t last very long. I can force my limbs to move, but only with extreme effort. It’s a strange sensation – like my brain is awake, but my body has gone to sleep. I don’t know if that’s what is actually happening at the time, but sometimes there will even be little hypnic jerks which seems to re-enforce that theory. I think my heart rate slows a bit while it’s happening (I bought my first Fitbit specifically to try and track these episodes) and I feel almost literally paralyzed.
I first really noticed the ‘going limp’ episodes about two years ago or so, shortly after I started my current job, and this (in addition to the worsening insomnia I’d had for years) is what led to my seeking an answer for the issue at a sleep clinic; it is also what led to the diagnosis being ‘Narcolepsy with Cataplexy’ rather than just Narcolepsy.
Looking at this all through my post-Asperger’s diagnosis lens, it seems like a sleep attack shares a lot of similarity to a shutdown (when I shut down, it’s a lot of the same signs but without the crushing drowsiness) and in some instances some sort of extreme emotional stress or conflict has definitely caused a sleep attack, so I think there’s probably a connection. Other times, though, it seems to come out of nowhere, though in those instances, maybe it’s more the result of cumulative rather than immediate stress?
I don’t know if the limp spells are actually Cataplexy – it’s atypical, if it is, and my therapist has theorized that maybe those episodes could actually be a kind of seizure of some sort. I don’t know where the Asperger’s ends and the Narcolepsy (is it really narcolepsy?) begins. My autism diagnosis also had PTSD and ADHD as tagalongs (though I also question the ADHD diagnosis as well) and there’s also something else going on that has eluded a diagnosis, some sort of autoimmune issue possibly, that comes and goes in cycles and seems to worsen the other symptoms. I’ve given up trying to puzzle it all out on my own, and nearly caused myself an epic shutdown trying to deal with the medical system looking for an answer last year. All I can really do is heed the signs when they come on, and take some down time whether I want to or not, and hope it never gets any worse.