As people were asking for a seizure narrative...!
That's really fascinating. My younger brother has epilepsy, and he never remembers he's had a seizure afterwards. Instead, he'll be complaining of a massive headache and we'll have to tell him, "That's because you had a seizure." He has lots of different types, from short "spaced-out" kind of ones and the more intense spasm-y ones. I wish he could tell us what he experiences, but since he never has any recollections we don't know.
I'm curious what it feels like to have an epileptic episode via some sort of narrative.
I have another question: I've heard that some people experience symptoms which alert them to the fact that a seizure is on it's way. My brother doesn't seem to have any, or if he does he hasn't recognised it and linked it to the seizures. Instead he sleeps afterwards and has a terrible headache when he wakes up. Does anyone here with epilepsy or who knows someone with it know of these trigger symptoms? How do they manifest for you?
I took a quick look at this thread earlier this evening and was just reading through the most recent posts, then went off to have some food while I mulled over what I wanted to say in response. Subesequent events have made me decide to address the questions quoted above instead of the issues I was originally intending to deal with; I expect you won't have too much trouble working out why
I was having a bit of trouble concentrating while trying to think about what I was intending to say and get everything in order, and it got worse as I sat down to try to actually write. I ended up leaving it and writing something a bit more lightweight to post on another site. That got complicated as well however, and I started feeling increasingly tired, slightly shivery and numb, and like I needed to lie down somewhere warm and comfortable. Bed was convenient, so I lay down there. It was quite a struggle to keep my eyes open, and I was conscious of what can best be described as a sort of light-headed, warm fuzziness, a sort of semi-blissful detachment - I didn't really want to think about anything too complicated any more, it was just too much effort. I remembered that I needed to put the laundry to dry, and forced myself to get up to do it, which was quite difficult, as I felt lethargic and cold, all my limbs seemed heavier than usual. I flopped back down and covered myself up as soon as I'd dealt with the laundry. I was fairly sure from the way I was feeling that I was likely to get some kind of seizure, as these are fairly typical warning signs; I just didn't really know how bad or for how long. Sometimes I get a kind of numbness or very faint metallic taste that seems to be at the roof of my mouth, but not this time.
I lay there quite a while, actually trying to focus on noting whatever sensations I was getting in order to have something worthwhile to to say later. The feelings of fuzziness and lethargy grew stronger and I had several very brief lapses into unconsciousness of no more than a couple of seconds each - I'm really not sure if they should technically be considered seizure or sleep related, though they were most likely very brief seizure type episodes leading up to the main one. After maybe 15 or 20 miinutes of lying there esentially fully conscious, but very lethargic, whilst trying to maintain full awareness of what was going on, I slipped briefly into a sleep-like seizure state, while maintaining more or less full conscious awareness, as generally happens for me. I remember feeling somewhat amused that I was indeed going to get one just as I was thinking about it - as I'm not aware of having had any episodes for the last few days at least. It is possible that it was partially induced by me reflecting on and recalling the sensations associated with it, though given that I had some fairly typical signs earlier (I believe this is commonly referred to as an aura, though I wouldn't necessarily use the term myself) I think something was likely to happen anyway. I don't always get seizures after these symptoms, and occasionally have had them without any premonition, but most of the time it's a pretty accurate indicator that something will happen.
As regards the experience itself: It was in some respects like a very intense, speeded-up dream, a vivid stream of hallucinatory images and voices. I had enough awareness to know that they were not present but it nevertheless seemed that they were. I was more acutely conscious of the physical sensations that I was getting concurrently with the hallucinations, however, which were extremely intense and had no connection with them. I felt that all my limbs were going heavy and cold, overpowered by a spreading, tingling, numbness and passing out of my control, while at the same time being overwhelmed by a kind of white-hot, burning, extraordinarily intense emotional sensation that is extremely difficult to describe in everyday terms, less a particular definable emotion than a kind of purified distillate of the raw essence from which emotions are formed. It seemed to start at the pit of my stomach and spread through my body like fire until I was aware of little else, even while the audiovisual hallucinations were continuing, and the conscious, aware part of my mind was trying to make sense of them for future reference. At some point during this I imagined that I was still able to move my foot, but I don't think this really happened; it was probably part of the hallucinatory process.
It would have looked to anyone observing like I was simply asleep, I suspect. My eyes were closed (I know this as the first thing I was aware of as I came round was opening them) and I'm not aware that there was any of the shaking or trembling I sometimes get, though it can be hard to be sure if there's no-one else around. Movement is not a necessary component for me, and I think it tends to occur more with the more serious ones as they become generalised. Usually if there is any associated movement it's either a shaking of the upper body or trembling, sometimes clenching, of one or both hands, the left one if only one. The whole experience was quite short, if very intense while it lasted. I don't think it was more than 30 seconds or so, and I retained more or less full self-awareness throughout, which puts me in a fairly good position to judge. I think I made a sort of involuntary groan as I came out of it and opened my eyes.
The main things I was aware of then was that I was sweating, feeling a little disoriented (which only lasted a few seconds until I was fully conscious), and my heart was racing, though not as much as it sometimes is at that stage. I was feeling rather jittery, what some people would describe as a "butterflies" feeling in my stomach, and perhaps had a slight tremor (this could be due to the fact that my pulse was racing though).
I was feeling able to get up and get back to what I was doing within a minute or two, and it really didn't take me that long to feel back to normal, if a bit shaky still, and quite alert again, as will probably be evinced by the fact that I'm now writing this post a couple of hours later, which I hope is an at least somewhat lucid description of a complex and unfamilar experience. I've been feeling wide awake and reasonably alert ever since, which suggests to me that the extreme tiredness was caused by the need to have the seizure, as I didn't actually sleep when I lay down. If it had been a more serious event, or one that took place while I was already sleeping, I would probably have needed to sleep afterwards, perhaps been very tired and slept for longer than usual.
I hope this description has been interesting and useful to those who are curious about the subjective experience of having a seizure and the process surrounding it.
I need to qualify my narrative on several points though: this is a fairly typical episode for a particular tpye of mild to moderate seizure that I often get, but I do also several other kinds, some very mild and some more serious, more intense and longer lasting. This is a common manifestation, however, maybe the most frequent single type. Also, there are many types of epilepsy, and I only suffer from one main subtype as far as I'm aware. The symptoms are most consistent with a nocturnal form of Temporal Lobe Epilepsy (TLE) with a focal point probably in the right temporal lobe of the brain, causing simple and complex partial seizures which can spead to become more serious secondary generalised seizures. I'm reasonably sure I've never had a true grand mal seizure, though that might depend on how exactly that is being classified. Several individual features of my own condition are fairly rare and the combination even more so; probably I'd be of great interest to an epilepsy researcher if I wanted to offer myself as a guinea pig because of this, but at the moment I wasn't planning to do so