Tonic Clonics - eyes open, or closed?

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I'm getting ready to head to the doctors office...but before I go I was wanting to ask something for my own curiosity. I know what I do but only because my husband has told me.

Are your eyes open or closed turing a TC? And, what is your diagnosis (if that's too personal, just don't answer!)
 

Nakamova

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The majority of people with tonic-clonic seizures have their eyes open at the outset of the seizure, even while unconscious. There can be rhythmic blinking during the seizure, and the eyes are often closed post-seizure until consciousness is slowly regained. It's one factor considered when diagnosing psychogenic non-epileptic seizures -- apparently the eyes are closed the whole time for the majority of folks experiencing those.

I've never witnessed mine, but I've been told that my eyes are open and my head turns to the right. I was diagnosed with epilepsy very soon after my initial inset seizures, in part due to a strongly-confirming EEG.
 

Cint

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I've been told that my "eyes were rolled up into the back of my head", if that makes any sense. So I guess that means they were open during the TC seizure. Then, they would be closed until I re-gained consciousness.
 

Nakamova

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Some kinds of epilepsy don't always show up on the EEG -- temporal and frontal lobe can be tricky to diagnosis as a result. But if your eyes are "open" (as Cint mentions they may be open but rolled up or to the side) during your seizure, then that may be one sign that it is epileptic in nature.
 

LJ-Bain

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Personally I hate the whole is it psychogenic or is it epileptic question that is inflicted on so many people requiring help and their delay in receiving it. Regardless of which diagnosis is correct. Apparently something like 90% of people with PNES have their eyes closed, but what about the other 10%? How can they really tell which it is when the EEG is normal?
Don't mind me! I can rant about this topic till kingdom come.
Good luck at the doctors office!
 
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My eyes have always been open. I read that 96% of people with PNES had their eyes closed, and that 97% with epilepsy have them open.


My GP is ordering another EEG, just a regular one. No meds, and sleep deprived. I should know in a day or two when that will be.
 

Rae1889

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Mine are open, they dilate and contract during the seizure, and they usually look to the right during the start and towards the end they roll up into my head and my eyes close. Chad videotaped my face during the seizure and it looks so grotesque
 

Maisy

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my eyes are sort of half open, and they roll too the left, and my head jerks right back, seen this on a video i managed too get the other day, answered alot of stuff!!, also i know this post is old but was wandering about this
 
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We finally got a good video. It looks like I'm trying to close my eyes while trying to keep them open. They're kind of squinted, but they're open enough that you can see my eyes roll back.
 

Maisy

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Thats brill!! in so many ways, and squinted the word i was looking for lol
 

qtowngirl

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eyes roll back into my head but stay somewhat open, and just like nak said, and so many others i've read, head turns to the right. should investigate that, if majority of people (must be with temporal lobe E?) turn to the right there must be a good reason.
sometimes when i turn right i don't know it, and other times it's right before i go out and i remember that part.
 
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Interesting my head turned to the right. But then as the seizure was ending I kind of went back and forth violently.
 

Nakamova

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Yup head turns to the right for me too. Or maybe it's the rest of my body turning to the left. :)
 

Chaz1

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my Son, T/C eyes open to right and always leaning towards right side......
 
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I have been told my eyes are open and roll back and my eyelids flick a lot. Sometimes My head jerks to the right as well. Usually quite painful when I come to. Also found out E runs in my family, but no one who has had it has been as bad as my seizures. I was diagnosed psychogenic non-epileptic seizures though...
 

KarenB

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oh, horrible. When a seizure starts for Jon, he'll be staring right at you with this look of absolute horror (and bloodcurling screams). Then, when the convulsions start, his eyes sort of roll up and a little to the side.
 

LW6279

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My eyes are open and up. Then my head turns to the right and body to the left.
 

Toxic-virus

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Interesting my head turned to the right. But then as the seizure was ending I kind of went back and forth violently.
Unlike you I could not watch that mine anyone else's.
It's good that you do maybe I'm still in denile or sommit but Naa
I'd rather have a dog chew me knackers before watching that.
 
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Unlike you I could not watch that mine anyone else's.
It's good that you do maybe I'm still in denile or sommit but Naa
I'd rather have a dog chew me knackers before watching that.
This is going to sound awful...I've watched SO many seizure videos. Even the complex partial type when people are acting "a little funny"....I never laugh. But when I watch mine, it cracks me up! I don't know why. Maybe it's more of a nervous reaction. It freaks my husband out when I seize, he hates them. I don't really care for them either, but they scare him. However, each time I've seen my video, I laugh at myself.
 
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