Epilepsy Foundation

If anyone has had their child describe what a seizure feels like I would be interested in hearing about it. 

My daughter has drop and myoclconic seizures. We are adjusting medicines and over the weekend she was having a very painful/scared look, with loud vocalizing during her seizures. We are just interested in trying to understand what she feels during seizures. She is not able to communicate verbally w/ words and usually has a flat or happy affect on her face. Pain is not something we see very often from her. Yes, we understand the knocking of knees/head/shoulder on the floor is painful as she fall after her drop seizures.

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I have asked my son the same question many times,he had his first

grand-mal at 16 yrs.But he had many small version of seizures in

the past.Not knowing at the time what they were, or what to look for.

His seizures  were very strange to describe or acknowledge and only came

at night.

He has told me that that he feels nothing,can hear muffled voices in the back ground.

He is not in pain,like he knows his body is doing something but cannot control it.He eyes

are wide open with no blinking.His seizures were with whole body in stiff-state,his arms,

legs, everything.Sometimes chewing on his tongue,lip and inside of his cheeks.(causing small cuts )

He cannot talk just howl,scream,and jerk or bounce like ball.

He has been seizures free for 9 months now,he is 17yrs.old(yea !!!)but this was after 10 times to the

 ER.children's hospital.He is also has Asperger's so this comes with more trial and error in trying to figure out what is going on in his head and body.

But the weary thing about him was after any kind of seizure, he would cling on to me and ask me if WE were okay/I mean this was over and over untill the nurse would come in and give him some a light sedative.Here is this teenager that looks like a linebacker, big thick bones,with his arms around me and

stroking my face for reassurance. I had to hold him and tell him that it was over and please rest and promise not leave him alone.Plus it takes him 2-3 days to fully recover from a gran-mal.He will usually just rest on the couch for those days.

I hope this helps, we are still taking it moment by moment,day by day.....

Take care of yourself and your daughter.

God Bless


Never having had a seizure but knowing that the brain does not have nerve endings and can't feel pain, I would think they are not painful. But who knows what "sensations" and other things that might be felt, seen, heard during/before/after etc. My son doesn't remember having them. He could be talking to you or doing something while having one and he doesn't even know he is having one. My daughter on the other hand, used to have some type aura moments before and get upset and call me. I am sure that even though it might not be painful, there must be feelings/emotions associated with the experience. 

My daughter's seizures are pretty mild, very partial, so this may not be accurate of what your kiddo is feeling.  Lately her seizures have been affecting her mouth/lip.  She says it feels tingly and numb.  Sometimes she has a bit of headache before a seizure.  She definitely has auras a lot before her seizures, so that could be what her head pain is, or sometimes she has weird dreams before.  She turned 9 in the fall and it had been seizure free for 14 months until a couple of weeks ago, so this is the first she has been able to really articulate how she feels before/during/after a seizure since she is quite a bit older now.  Not sure if it gives you any insight or not...Also, my daughter was very emotionally flat while she was on a higher dose of one of her medications, still trying to find the "perfect balance" between side effects and seizure control, but we can tell a huge difference in her personality as the dosage of her Zonegran changes.

My son age 12, has explained to me that he feels a sensation like "creepy crawly things" in his scalp just before a seizure.  No pain or recollection of anything from the actual seizure and afterward he is typically dizzy and feels sick to his stomach.  He will usually fall asleep and look pale for a while afterward.  He reports no pain at all, other than the stomach discomfort afterward which has led to vomiting.

My husband has had sz's all his life.  His most recent one was in Sept.  He told me that he does not feel anything during the sz.  The only pain he had this last time was from hitting his head on the kitchen floor.  My daughter is too little to describe anything.  She usually acts as if she doesn't realize what happened.  Both my husband and daughter have tonic clonics.  Their sz's always look horrible, but Frank assures me that they don't feel anything.   


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