I have a new neurologist and I have been trying to explain to her what it feels like before a seizure...I'm curious how others feel before a seizure.
I don't get an aura where I smell things or hear things...but I'm very aware when I'm vulnerable to a seizure. My thoughts will start racing. My counsciousness seems to split in two...imagine straddling an earthquake where the land moves in two different directions.
Then I'll feel like an electric wire was shoved in my brain and it starts to spark, setting off little explosions.
If I'm out of the house or unable to sit and relax I'll start to panic.
If I can lay down I can generally relax and get past the episode, but it takes 30-45 minutes, and I'm vulnerable for the rest of the day.
Xanax was a big help when things got bad, but my MD's hate prescribing it.
What do you folks feel before a seizure? How do you explain to a doctor? Thanks.
When I start to have a seizure depending on what kind I am having, I usually get really hot, my hearing and eyes get fuzzy and I start feeling confused. And from there I kind of lose feeling through my body and thats when I pass out.
Mine too last for 30 plus minutes and sometimes when they are really bad I am a mess for a good day before I feel normal. When I come to, my speech and the rest of my motor skills are as if I am severely intoxicated. I wake up confused and dont know what happened but it usually all comes back to me later.
When describing it to your neurologist just describe it exactly how you feel. Basically just like you did. Most of my Grand Mal's have happened when someone was talking to me and there voice and face just goes into slow motion. I myself have never made it far enough to sit down or lay down before I fell, thats how quick they are.
Just try describing it as best you can. Its tough because a few times I dont even know what happened.
When asked by my psychologist to take my time at home and describe in writing my conscious feelings as a seizure approaches, in a descriptive way that he or someone else could compare to their feelings or emotions, like panic or love.
The best that i could come up with after some time was this;
"Only now with experience can i describe it, at first it happened before i realized it was about to, even now if i am busy in the world around me it will catch me out.
But if i relax i can see it coming, it is over there in the distance, and if time were a path then this one is a dusty well trodden path and i am marching on it towards a huge castle gate not to far away. Its loud all around me but i'm not too scared anymore because i have been here before so i feel comfortable now. My memory is fading and maybe i like this walk, then maybe not. But even so i can't stop i am marching hard with others, lots of people in stride, are we romans? i think so.
Suddenly! Heres the gate woh that was quick, very quick what can i do, nothing its too late.
Oh i remember now.
Just relax, never mind."
When asked about my description i replied;
"Sometimes i can avoid it, like slipping ranks, Hiding. But in my heart i know that i will see those gates again that is the only way that i know anymore"
Therein lies my biggest problem.
Last edited by shakin stevens; 01-31-2009 at 02:51 AM.
Thats a good idea to write your feelings even though they seem weird when you are 'with it', it is an example. It's hard to discribe an aura or seizure because there are really no logical words.
Louis Carrol (wrote Alice in Wonderland) had epilepsy. Some on computer have said maybe lots in that story he maybe got from his auras. Like shrinking & walking through a mirror. I can imagine someone having an aura as they were standing infront of a mirror and thinking they can go in.
My legs & ankles start to tingle then it moves up my body in a wave like sensation. Everything slows right down & I feel like I'm watching from outside my body. Often I get a really really strong sense of guilt/worry that they can feel & see whats happening. When the wave reaches my head I'll see a movie clip type thing playing in front of me...
If I then start to feel sick then I know I'll pass out otherwise it just washes right over my head.
I've been told I grab my throat just before I have a seizure & when I come too I sometimes try & pull chunks of hair out of my head.
My auras are usually long enough for me to get somewhere safe. I've also been told I get really really hyper just before & then suddenly I go down hill really fast. It's like a flick of a swich. There are times when I've known I'm going to have one but it can take a few hours to actually develop into a grand mal.
I get the same twitches in my right leg. During the EEGs when my mom is there she can tell the Dr that I'm about to go into a seizure sometimes before I even realize it.
I also get a warm feeling throughout, then the twitches, and tightening of my right leg.
I've trained myself to be able to even hold off the full seizure for up to an hour while my leg is rock solid and twitching, sometimes almost violently. But of course the longer I hold it off, the worse the seizure ends up.
I do my best to get to a place away from most people, and to a soft bit of ground. I once had to walk a mile in order to get to a safe place (which included stairs and a hill or two). I walked into the hospital and collapsed, though they panicked far more than any "Joe Six-pack" on the street would have. Which just made the seizure worse.
I don't go unconscious, so when people around me panic it makes things worse for me.
I lay down on the ground and curl up in a ball with all my muscles getting super tight. My hands clinch into a fist, and anything caught gets destroyed (dents in solid wood, and a poor nurse's fingers crushed). I can barely breath, and have to fight to do so. But I can fight, and avoid hitting anything dangerous, or hurting anyone, and even communicate while I'm convulsing.
But yeah, I get auras well in advance, and can postpone the seizure. (That confused many doctors)