Many People only know Full body tonic seizures

[niceguyVZ]

They don't know that small twitches and partial and absense seizures exist. which don't make you fall to the ground and convulse.

I personally didn't know nothing about epilepsy either until i started having symptoms and i researched about seizures and epilepsy. And they can range from absence eye staring and small twitches to full tonic ones .

But yeah, seems the general population just knows about Full tonic seizures and they don't know that other types exist.

Even some Medical doctors don't even know about it.
And the media also when they talk about seizures they mainly talk or depict the Full tonic ones.

i have absence ( yeah and that's even though I'm old in my 30s, and I read and heard that it mostly happens with kids) seizures. And then some weird ones when i walk . I might even have Photosensitive ones.
op:

 

[N Sperlo]

Very true. I didn't know a damn thing until just before I was diagnosed.

I still have friends ask me if I'm "ok around the strobes" at concerts and things like that. I kind of wish they would know, but at the same time, their ignorance does me no harm, so it doesn't bother me enough to care.

 

[chmmr]

Agreed. The general population knows very little about seizures other than Tonic Clonics.
My daughter has complex partials, and possible some simple partials as well and if someone asks about her seizures they seem shocked that i think it's a big deal that she "blanks out for 30seconds to a minute". I realize it's not as bad as a TC, but they are still bad and still dangerous for the people having them.

 

[valeriedl]

This is so true!

I'll tell people I have epilepsy and they will take a step back from me thinking that I may fall to the floor and start shaking like crazy. Guess they don't want me to fall on them?

I'll try to explain what my seizures are like but they just don't understand. "So you don't shake during yours?" is the question I always get. I'm usually asked about strobe lights too.

 

[qtowngirl]

the social idea regarding what epilepsy truly is is sickening really. this world has taken the slowest road to advocating and teaching the realities of our neurological disease, one that is considerably common. as a planet we should be embarrassed for all the mis-informed, it has to change, and now.

for everyone with e and being part of the most comforting epilepsy forum there will ever be, pls let's do it together. on my page is an album called 'coping with epilepsy poster'... and to get the printable .pdf version bernard has added it to my thread under first post: http://www.coping-with-epilepsy.com/forums/f36/ultimate-way-promote-forum-22576/
we all understand on here, and those with e or 'waiting' for that diagnosis need people that truly feel their fear, their pain, their stress, and their tears.

hugs to all, natasha

...and i agree. everyone that started this journey with me were stunned to hear there was such a thing as a simple partial seizure. and that they can lead to a grand mal. i've explained all the fear and irrational feeings that come with my s.p's so many times it wastes me. but, it doesn't matter b/c i'll keep repeating it to anyone who doesn't know or is mis-informed. it's 2014 world, get with it already.

 

[niceguyVZ]

"partial seizure. and that they can lead to a grand mal" wow. I didn't know this.
So if i have partials there's potential i can get grand mals too?

Well it does make logical sense because all this time(more than 20 years) i just had Eye starings and Head jolts. they wouldn't bother me that much but since like few years i started getting weirder stuff, and then lately in december i started getting the current ones where i almost fall to ther ground and feel like almost fainting.

So seems it was like a destiny that the ones i had would turn to stronger ones in the future, and they did. But i would really not like a Grand mal cause i would end up falling in the street and gettign seriously bad.

So whew, at least i am going to the doctor now. And they're helping me deal with it or at least know what's going on.

 

[heylena]

This is why it took me so long to come to terms that I had epilepsy. When I first started researching, the closest I had gotten to what I felt during my attacks was epilepsy and I told a close friend "I have this, but in minor form". My friend didn't think I had it because I didn't react as violently as one would with grand mal seizures. I even went to doctors and nurses, but they told me they were fainting episodes and that I was just too skinny.

I have never tried to explain to people when my attacks have occurred around other people or in public. I just say: "I am okay". Although they do look at me warily, they don't ask any questions.

 

[girlwithadog]

I knew nothing either and it's a shame. My family has no clue and it drives me mad. I try to explain it but they think as long as I'm not convulsing that everything is peachy.
I'm pregnant and any seizure while pregnant can cause serious problems so I've been put as high risk and in and out of doctors offices every week since I got pregnant. I also didn't start (my decision) any AEDs until I was into my second trimester to lower the risk of birth defects and my whole family thinks that because I haven't had a tonic clonic since 2012 that it's safe to not take meds, that I don't need to see the neurologist and every time they come to me they ask "So when is the last time you had a TC?" then I have to go on to detail it "still no TC since 2012 but I have had drop and absent seizures since" and their response is always "well that's good, glad to hear you haven't been having any seizures!"
Really? You'd think at least my own mom would do some research on the subject but every time I have an out of town appointment with a specialist "well you haven't had one of those bad seizures since 2012, do you really have to go all the way out there to see the doctor?" and "You haven't had any more bad seizures since 2012, should you really be taking that medication?"
But I would have been the same way if a friend had it and not me probably. I didn't learn about the different seizures until I was actually diagnosed with epilepsy last year. And it's shocking because I've been having these episodes since I was a young child and the doctors always said "migraine", "dissociative identity disorder", ""schizophrenia" etc for the excuse. But I start taking the medication and the episodes I've had for years every day numerous times a day happen only once every week or two. So frustrating! Blah. OK I'm done ranting now lol but I'm so frustrated that I spent the last 21 years (I'm 26 and the doctors believe I got epilepsy from a head injury when I was 5 in an accident) being told it was all a mental problem spending thousands of dollars on therapy thinking something was wrong with my mind when it was epilepsy all along.

 

[2ndchances]

the social idea regarding what epilepsy truly is is sickening really. this world has taken the slowest road to advocating and teaching the realities of our neurological disease, one that is considerably common. as a planet we should be embarrassed for all the mis-informed, it has to change, and now.

:agree: The misconceptions that are out there about epilepsy was one of my biggest motivators for redoing my little video, and shifting the focus to include more facts and knowledge about the condition. (link in my signature below if you want to view it). Hopefully by us advocating in our own ways and using our voices, (qtown with the poster, this site, my video) maybe we can start chipping away at that little by little!