To get right to the point, my son had a seizure (febrile) last night. I’ve talked to doctors and I’ve googled some stuff, but I still don’t know what really happened to him. As much as it scares me to know, I’d like to have some idea of what he went through. I can’t ask him (he’s only two), so I thought perhaps some of you might have experiences you’d like to share with me.
Alex has been and will continue to be treated by real life doctors. I do not want or need advice to treat, prevent, or cure any diseases; I’m merely asking for some details about the experience of having a seizure. I have a few questions to get things started and I’ll add more as I think of them.
How do you feel before, during, and after a seizure? Do you know it’s coming? Are you aware of what’s happening (the sudden rigidity, the shaking, the eye rolling, etc.), or are you just sort of “gone” for all that? Is it painful? Assuming you maintain consciousness and are aware of what’s happening, do you remember it when it’s over? If you do not experience the above parenthetical symptoms, what are yours like?
After Alex’s episode, he seemed far away; he didn’t move more than his (unfocused) eyes for at least 15 minutes and he didn’t speak for at least 40 minutes. Is it like that for you? What’s going on during that time? It’s terribly scary, isn’t it? It looks scary…
My daughter doesn’t lose consciousness with her seizures. She gets extremely nauseated, feels “tingly” and then her left leg and shoulder jerk uncontrollably for a few minutes. Afterward, she gets an extremely strong urge to urinate. So yes, she knows they are coming. She can’t do anything to stop them. She only had one episode in which she lost ocnsciousness for microseconds. She described it as a “brain blink.” She told me she heard me talking, but it was as if she were asleep because she missed parts of the conversation.
My husband had absense seizures as a child. He would be in the middle of an activity or sentence and suddenly stare straight ahead and blank out for a few seconds. When the seizure was over he would continue on with whatever he was doing, completely unaware of what had just happened. He would simply lose moments in time.
Well, let me start by saying that febrile seizures in young children are often not repeated. So don’t panic.
But… I’ve had Grand Mal seizures for the past eight years. Sometimes I pass out right away, sometimes I don’t. They begin with one of my limbs shaking, usually one of my legs. It quickly spreads to the rest of my body. As soon as my leg starts shaking, I’m not able to speak. Once the seizure has spread to the rest of my body, I usually pass out and wake in a few minutes. The seizure itself is not exactly painful, but my muscles are usually sore, and I generally have a bitch of a headache. It was scary at first, now it’s annoying. And scary for those around me.
I was epileptic from early childhood until my teenage years. I took dilantin to control them and eventually grew out of them. I think my last seizure was at age 13 or 14. While I was taking the dilantin I don’t think I ever had a seizure unless I missed a dose.
I’m told that the type of seizures I had were “partial-complex”. I don’t think I ever had “absences”. I had a seizure about once a month or less. With a few exceptions all of the seizures I had were in bed when I was either falling asleep or already asleep. Apparently I had seizures that I didn’t remember the next day, but there were also many that I did remember.
I don’t know exactly what I looked like from the outside, but apparently my whole body would tense up and I would shake but generally not flail.
I could often feel when they were coming on, but generally my seizure started very soon after the feeling so it might be like waking up in a car that was about to jump off a cliff: you’re like “Oh shit! What do I do? I guess there’s nothing to do but brace for impact.” And then you are in the air and not thinking too straight.
The physical sensation of one of my seizures was basically that of losing control. Parts of my brain would be firing haphazardly and I had no feeling of control over that. I don’t ever recall this involving unbidden thoughts, I think it was all in the physical realm, but it was nevertheless scary.
A seizure was a strange moment when I could watch my brain sending signals to my body without the normal conscious or subconscious control we all have. At those times I could observe something that was clearly not me controlling (parts of) my body. It’s kind of hard to explain.
In my memory of a seizure, I recall a sort of “buzzing” or “static” in my mind. Both of those words are such inadequate descriptions that it’s not even funny. I don’t think there is a way for me to remember the sensation accurately (short of having another seizure) or describe it to anyone else accurately. Perhaps if you imagine the sensation of moving a particular body part and then took that and imagined that your mind was filled with a whole bunch of those sensations, more than would ever normally exist in your mind at any one time, and that these sensations or implulses were more often than not working at cross purposes.
This is what I felt during a seizure. I imagine it would be at least slightly different for someone whose seizures affected a different area of the brain.
I know. And I know no one can tell me “This is what your son felt.” I might get some idea though. Based on your post about your daughter, I know now that Alex might have heard his dad and me. I didn’t know that before. It’s just more information for me, that’s all.
Thanks. I read a great article last night that made me more comfortable with the whole thing, so no panicking for me anymore. For now, anyway.