By Amber Kaiser

Recently, I thought about sharing what it’s really like to experience having a seizure. There are many different kinds of seizures and depending on where the person’s seizures stem from in their brain, they can experience different effects, feelings and side-effects after the seizure that someone with the same kind of seizure experiences because every person’s brain is naturally unique.

Seizures can also feel different if they stem from different parts in the brain. For example, a simple partial seizure (also called focal aware seizure) stemming from the left temporal lobe can feel different than the same type of seizure stemming from the right temporal lobe, or especially a completely different part of the brain like the frontal lobe. My experience with seizures has stemmed from my left temporal lobe, and I’ve read seizures in this area of the brain normally bring in a lot of negative and fearful feelings, and that’s so true in my experience with complex partial seizures (also called focal impaired awareness seizures). 

To give you an idea of what it’s like to feel a seizure, I’m sharing a few of my personal descriptions here. Like a lot of people with epilepsy say, the feeling of a seizure is really difficult to explain and put into words. Also, the only ones we can attempt to describe are the ones we remain conscious in, whereas others like generalized or grand-mal seizures (where we become unconscious) can only be described of the feelings shortly before and after if you are aware enough and remember.

Below I give you a few examples, including an attempt I gave at describing my complex partial seizure, which I shared with a neurologist I was seeing at the time. This was also how my complex partial seizures felt before my brain surgery. After my brain surgery, when I started having complex partial seizure clusters again, they have felt similar yet also different, and I experience similar side effects. Thankfully, I don’t have as many and they only happen while I’m sleeping now; whereas, before my surgery, they happened any time of day in addition to while I was sleeping. . .

What a nocturnal seizure feels like‍

Imagine. . .

You’ve had a stressful day. You finally fall asleep that evening and the next thing you know, you wake up and have no idea where you are. You know something happened, but you have no idea what. You start freaking out, your heart feels like it’s pounding, your body aches and you feel exhausted. You have no idea where you are or what day it is. You feel like your whole body was in some sort of battle and like you had just run a marathon. You fall back asleep and wake up later that morning feeling exhausted, depressed and not like yourself. When you look in the mirror, you may also see red dots around your eyes.

You just experienced your first nocturnal generalized seizure.

Imagine. . .

You haven’t been sleeping well lately and you’ve had another stressful day. You fall asleep quickly that night. The next thing you know, you wake up, you know where you are and you are feeling a horrible feeling and wish you were in a dream. You wish you could stop it. Your heart feels like it’s pounding, you want to grab your phone by the bedside, but you can’t. You can’t move and you just wish the feelings and chaos in your head would stop. You don’t know how long it’s been happening. You feel horrible and want it to go away. And then you fall back asleep. Next thing you know, you wake up again, the feeling is back, you just wish it would go away. You feel so frustrated. You don’t want this to be happening again. You fall back asleep. You wake up again. That feeling is happening again. There’s nothing you can do about it. You can’t move, you can’t talk, no one is there. You fall back asleep for a while and wake up later that morning. You feel extra tired, depressed, your short-term memory is shot. Your body is trying to recover and you remember you had these weird feelings late last night or super early this morning, you’re not sure which. You remember having the feeling once, maybe three times or was it four?

You just experienced your first nocturnal complex partial seizure cluster with blackouts.

Now imagine the weird feelings you’ve just experienced during the complex partial seizure cluster. Before my brain surgery, this was a description I had written about the way I felt during a complex partial seizure which I had anytime during the day or night. . .

It’s a “bad” feeling that hits me, consumes me. I feel uncomfortable and odd. I usually feel depressed after it happens, especially when I have many in one day. I’m aware enough that I can definitely tell my mood changes and I feel down. Things taste weird—not as good—so I have no desire to eat. Even water has an odd taste. It’s like I’m tasting something I never knew was there. I can also get an intense headache depending on how many I have. While I’m having the feeling, I don’t want to talk because it’s uncomfortable—I can’t talk—I have to let the feeling pass first because I know my words wouldn’t make sense. It seems that fractions of images rush through my mind, broken memories. I’m aware enough that I try to “grasp” the images, to put them together so I can solve the “puzzle” and control it, but I can’t, no matter how hard I try.

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Afterward, it takes me a few minutes to straighten my thoughts. If I was in the middle of writing, it would take me a few minutes to remember what I was going to write, what I was thinking about. My speech can get slurred, too. I feel all the side effects in accordance with however long I’ve had the seizures, sometimes a few days.

Would you like to share your experience of having a seizure? Can you relate in any way, or do your seizures feel completely different? How has epilepsy affected your life? If you’d like to share, feel free to email me at amber@neureka.ai, or our team at hello@neureka.ai.

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