Are non-epileptic seizures really non-epileptic? Or is current EEG technology just not there yet?


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My neurologist told me EEGs can only detect about 30% of focal unawares. Another neurologist told me EEGs can only measure brainwave activity at the scalp. What about the parts it can't measure? Since they like to blame these on trauma not yet dealt with (psychiatric in nature), where are the controls? Trauma is broadly defined to include everything from abuse, loss of a loved one, divorce, and on and on. I would imagine anyone would fall into that category.

I was watching videos of these so-called non-epileptic guy voraciously chewing and clearly 'out of it', another of a girl, her eyes rolling back in her head. No way these aren't seizures, just not measurable with today's technology.

I had seizures since I was 9, and at that point, it was only considered a "seizure disorder without epilepsy" and they were able to probably determine that with EEG and the symptoms I was exhibiting. I'd never collapse or become unconscious. I seemed awake and aware what was going on, but if someone wasn't in my body, they wouldn't know I was having a seizure. I would do things that were "off" or "odd", though, and teachers often didn't know what to do with me. My mom could take one look into my eyes and tell if I was having a seizure, she said I had this "glazed over" type of look and she knew it well, but she didn't know how to exactly explain it to teachers, the school nurse, etc. so it often times went unnoticed when this was going on.

The EEG picked up the seizure activity and it was definitely there, even though I could count backwards from 100 or tell the tech who the president was. I didn't miss a beat or a step, but the activity was detected and going on without a doubt. They also reviewed my symptoms, asked my parents anything they noticed at home (which was basically nothing because it usually happened when I woke up early in the morning and I have slow onsets so when things got bad, it was usually after morning recess, when I was in class). They were able to determine that I was having a focal aware seizure issue and this was back in the early 2000's.

Non-epileptic seizures don't always have the same symptoms. It depends on the person, of course, as our brains are all unique. Me, nor anyone else, ever recognized me trying to pick at my clothes, smack my lips, chew oddly, or have eyes rolling back in my head, etc. The main thing was that it was difficult for me to recall information and follow instructions, which was often mistaken for being "rebellious" in class.

The only time I gnawed the living daylights out of my cheek and was bleeding from my mouth was shortly after experiencing an epileptic seizure when I was much older, but I have heard that smacking of the lips and such is a common behavior for focal aware.

You'd be surprised how uneducated the public is about these, even in public schools! So many teachers don't recognize the symptoms to even what to do when someone is having a focal aware seizure. I feel like I went through Hell and back again with seizures, especially when I wasn't officially diagnosed and teachers and counselors wouldn't always leave me alone.

I'm not certain why these would be blamed on trauma specifically (I never understood it, I guess)....I mean, I get if it was like a head injury or something they were thinking could be a cause. I think that perhaps it's interpreted as extreme stress and people aren't taking other factors into play like nutrition deficiencies.

I was the good girl who was quiet and always got her work done until seizure threw me for a loop for a while and suddenly it was "lunch detention" each time I couldn't finish my daily, morning reading quiz the second I got into the classroom because I was having a seizure and literally couldn't remember. My teacher had to reteach me how to multiply after I had been doing it fine for weeks and he was stunned and said, "You forgot how to multiply..." and didn't know what to do but attempt to reteach me at his desk. I felt like I would never get out of lunch detention and have recess and of course, it was my fault, and no one else's at that point in time as it seemed.
Hi elizzza811,

I started having seizures when I was 10 yrs. old and I had the e.e.g. done and it showed scar tissue on the right temporal lobe
and it wasn't until yrs. later when I went in for surgery to reduce my seizures that they found out that my seizures were caused
by trauma when my mom was in her 4th month of pregnancy. My grandfather passed away and that hit her hard causing to many
brain cells to go over the right temporal lobe and as I grew they never dissolved.

When I was in school back in the late 1970's the teachers didn't understand a darn thing about epilepsy they knew I was having
seizures but they said I was faking them to get out of class which was a bunch of nonsense. Within time I went to a boarding
school for 3 yrs. and came back to the school I was at and graduated with no problems.

Sometimes I person will have what they call psuedo seizures which means fake seizures but what is going on is the person is
getting themselves, all worked up on purpose to bring a seizure on it's a psychological matter that needs to be dealt with
with a neuropsychiatrist by doing a video e.e.g on the person and they can pinpoint if the person is causing the seizure or
if it's a real seizure brought on by the neurons firing up to much.

Take my word public schools are out in left field they don't know a darn thing about epilepsy and how to deal with it. I retired
from public school after 35 yrs. and I told the school nurse and principal a student had a seizure and they didn't believe me but
a couple of days later the student had a tonic clonic seizure and they didn't know what to do so they came and got me to take
care of the student. After that I spoke with administration and they had a meeting for all staff in the school to learn about
epilepsy and what to do if they saw a student have a seizure.

Wishing You and your family only the best and May God Bless You,

Gotta say I’ve never heard of “Pseudo seizures”. Did a search and found this on a website.
“According to the NINDS, 5–20%Trusted Source of people who receive a diagnosis of epilepsy actually have PNES. Some people may have both”

Both!😬….you never know what Dr. Google might find 😁
That’s scary what some of you went through as kids ❤️
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There are several old threads here that discuss PNES in some depth. You can find them here:

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