#auroraborus

I'm writing a character who has photosensitive epileptic seizures and I was wondering if you have any tips on describing the experience of having a seizure?

My sister has them so I know what hers look like, but I've never had an epileptic seizure myself. Is it a painful experience? Is it more like fainting? What does the post-ictal phase feel like?

I know seizures can look different for everyone so rest assured this will not be my only source :)

Hello!

You're right that seizures are different for everyone, especially considering how many different types of seizures there are.

My last (Confirmed) seizure was several years ago. I have had some... "episodes" (For lack of a better term) that we're unsure if they were seizures or something else more recently but I'll be answering this with my confirmed seizures in mind.

I has epilepsy as a child and mostly had grand-mal/tonic-clonic seizures from what I've been told. For me, I experienced an aura anywhere from 5-10 minutes before the "main" seizure itself. This aura was usually a strange feeling in my head (Almost a tightness or pressure but feeling very loose as well? It's difficult to explain) with a rubbery taste in my mouth.

I can't say much about when the "main" seizure was actually happening as, for me, I wasn't really aware during it.

As somebody who faints... embarrassingly often, however, I can say confidently that it doesn't feel like fainting (At least for me). With fainting, I can feel myself starting to 'go' (My ears begin to ring and I feel almost like I'm fading out) and then I faint and it feels like I wake up almost instantly, even when it's been several minutes. For my seizures, it felt more like a blurred passage of time. I was an aware to an extent, I think, but not in the way it's usually defined (As being aware of your surroundings), it just wasn't like I was unconscious/asleep.

For me, I hated the postictal period the most. My seizures were usually accompanied by a loss of control over my bladder and would occasionally make me... not throw up, really, but almost spit up a bit. I'd usually wake up feeling incredibly tired and grumpy and usually ended up crying. The crying wasn't tied to any particular feeling, it was more of a physical response. And though I can now acknowledge that it's nothing to be embarrassed about, as a kid it was all pretty humiliating for me.

Just as a side note, my boyfriend also has seizures currently but not from epilepsy. I've been with him during his periods after the seizure before and he usually ends up acting like a kid, for lack of a better term. He cries a lot and is very disoriented but he's also very easily distracted. There have been several occasions where he's played with my keys for a few minutes before he comes back to it. He doesn't experience the same grumpiness and deep exhaustion that I did, though he has said that they make him feel very sleepy.

Although I didn't find the seizures themselves to be painful at all, there were several occasions where I ended up hurting myself during one. Usually this was hitting my head when I fell or during the actual jerking of the seizure but there have been other times when I had bruises or sore muscles afterwards. Given how young I was when I was having these kinds of seizures, I don't fully recall how the sore muscles/injuries felt as they didn't have as much of an impact on me as the seizures themselves.

After a seizure, I'd end up sleeping for anywhere from a couple hours to the rest of the day. I think part of it was the emotional exhaustion of a seizure while another part was the physical.

Now, I did speak a lot about the grand-mal seizures I experienced but I did also (And actually may still) have absence seizures as well.

A few years ago my seizures came back briefly and, despite my neurologist's best efforts, we couldn't figure out why. I'm not entirely sure how to classify them now but I was mostly aware during them and, from what's been described to me, my head was nodding up and down (To the point where it was all the way back), my eyes were rolled up into my head, and my eyelids were fluttering. I didn't experience any of the side-effects of my grand-mal seizures (Ex: Peeing myself, spitting up, crying, etc.) during these and I also don't know if I fell or not because when I had them, I was generally sitting down somewhere.

During these, my vision was flashes of colour/shapes and just generally what you'd expect from having your eyes rolled up and your eyelids fluttering. I was still aware that things were happening around me but I couldn't really process it the same way. I could hear people speaking but couldn't understand what they were saying.

You did mention looking into other sources for this and I'd definitely recommend doing that. These are just my (And, briefly, my boyfriend's) experiences and there are so many different experiences of seizures and epilepsy in general.

Cheers,

~ Mod Icarus

Hi lovely asker!

I have absence seizures and myoclonic ones so I'll add on my two cents as well (Cover more of the seizure spectrum here 😁).

For absence seizures for me its mostly just a complete blank space of time. There's one moment where I'm walking, talking, doing whatever and then the next thing I know I look around and usually like 30-ish seconds has past. If I was having a conversation and the person I'm talking to kept talking, I'm not aware of any of what they said when I was having the seizure. It's kinda like someone turns my brain off for a quick restart and then turns it back on again.

If there is nothing physical around me indicating of a passage of time. (Ex. Someone talking, I looked at the clock right before it happened, any living object that moves around) then I most likely won't know I had the seizure. Sometimes I have a little feeling because I often get headaches leading up to my absence seizures but other than that they're painless and more so there is that panic feeling of losing track of time. I'm usually just disoriented because of that sudden missing frame of time. I'll kinda look around, try to get my bearings, see what happened, if anything's changed etc.

Myoclonic ones really depend on how aggressive they are. They can be big (a whole side of my body will twitch) or itty bitty baby ones (my fingers twitch or I can feel certain muscles twitching). Kinda like with Tonic-Clonic seizures, all the muscles involved will contract on me and it's painful. Often times they're more annoying and frustrating than painful (trying to eat breakfast one time and let's just say my eggs ended up across the room).

They can cause my legs to jerk too which if I'm walking will make me just suddenly fall as my legs give out. Sometimes they can just happen as one, or they can cluster and that means that multiple happen in a row. When they cluster, they're often more painful because my muscles are contracting so many times. If I fall like I mention I often hurt myself because I just completely fall to the ground (not like fainting, I'm conscious and alert and I can move my arms and torso, it's usually just my legs that are the problem.)

Leading up to my myoclonic seizures sometimes I get really really really bad tremors that worsen with movement to the point where If it's my legs then I can't stand or walk (trusty old wheelchair). And if it's my upper body than my hands have very little use to me so things like eating, changing (buttons my enemy), writing, and pressing buttons is very hard to do (also I will add that I just have very clumsy dexterity in general so the tremors certainly don't help but yeah XD)

For all my seizures in general I get very light sensitive afterwards and my lovely doctors and nurses have told me it's because my pupils get completely blown and then constrict and they do this rapidly and it's often paired with nystagmus. So my Post-ictal is usually more just being sore, my head hurts, my eyes are very sensitive and usually the nystagmus is what lingers on the longest.

For tonic-clonic seizures (which I won't go into much because Icarus already did) they're the most painful for me and it usually hurts to move afterwards. I usually start to mumble and can't talk when they're about to happen it's just a lot of "um's" and "uh" and I can't form any words. I start to rub my hands over my body because my skin gets this tingly feeling, and I start to kinda look around frantically because again my anxiety does no help. During the seizure I'm usually in and out of consciousness so it's black and then I'll hear or see something for a split moment and then black again and yeah so on and so forth but I can remember bits and pieces (that I'm conscious for that is). Everything usually sounds really far away like I'm under water and my vision of what I can see is very blurry and there is usually like ten of the same person.

Very rarely i've stopped breathing during my Tonic-Clonic and with those they're usually not as painful (don't ask me why) but they are. Granted that initial struggle to breath again is a bit jarring but in my opinion these are a lot more traumatizing for the people around me than me myself.

Alrighty, hopefully this is of some help lovely person! As Icarus said this varies very wildly person to person and seizure to seizure so yeah. Have fun writing!

People arguing on one of them or something?

I haven't noticed anything out of the ordinary, but then again I don't usually look at my notes because it's pretty much pointless to try and keep up.