one question before I post

[salright2baredneck]

One of the things that seem to trigger my seizures, oddly enough, seem to be awkward moments, and not just mine either. If I am around someone that has an awkward moment, for example they are trying to make a point and all of a sudden stumble for the words, it triggers a de'javu feeling in me. If I have a thought that gives me that awkward moment feeling, it triggers it. Oddly enough even seeing that type of moment on TV also triggers it even though I know that they are acting. Weird huh.

[darkmarkshark]

The awkward moment sounds similar to the slightest bit of nervousness triggering a seizure in me. Its really difficult when you can't ask a stranger for directions because approaching them starts causing you to tremble and stumble over your words - and when you aren't worried or afraid of how they'll react either

[salright2baredneck]

The worst thing about these triggers are trying to explain them to someone that doesn't have seizures. It's actually reaffirming to talk to someone that knows what you are talking about. I usually get that "you are crazy" look when I try to explain it to people.

[RobinN]

Have you checked out this thread? :

Can you 'will' on a seizure ?

and:
http://www.psychosomaticmedicine.org...tract/46/4/315
http://jnnp.bmj.com/cgi/content/extract/64/1/139

[darkmarkshark]

I can will on a seizure - but only because I know that certain emotions cause them. So if I think about something that makes me nervous/angry then I'll have one

[RobinN]

I am not one with seizures, but doing research for someone that does.
So my information is second hand. There is research that says if you can will a seizure on, and understand what brings on a seizure then you can learn to prevent them.

I wish Zoe were feeling well enough to come on, because she is better able to explain this viewpoint.

[darkmarkshark]

Yes, I can prevent seizures caused by nervousness by avoiding all nervousness (which isn't practical) But I see having a seizure caused by intentionally making myself nervous is being no different than having a seizure because I decide to run over and stand underneath a strobe light. In both cases I'm doing nothing more than deliberating exposing myself to the trigger which could be avoided at that time, but not at all times.

Emotions cause seizures, so yes it stands to reason that you can prevent any seizure caused by emotion by simply not feeling that emotion. But thats also a false way of looking at things as you can never erase all emotion from your life regardless of how hard you try or want to.

Would you say that I can prevent having a seizure caused by flickering lights just because I can cause myself to have a seizure by becoming angry? I fail to see a correlation between the two. I get the impression you are saying that if you can will on seizure using any of your triggers than you can learn to prevent all of your seizures.

[darkmarkshark]

*Also to be clear, by "willing" a seizure on, I'm not thinking "Oh, seizure come on baby, I want you now." but things more along the lines of things similar to approaching your boss for a raise when you've worked at a place for 6 years and have never heard any mention of a pay increase" or thinking about a horrible case of animal abuse I heard on the news and how painful it must have been for the animal

[RobinN]

Again I am not the one that has been able to do this. I read that it can be done. In fact the Andrews Reiter Center has a 85% success rate.

http://www.andrewsreiter.com/

I don't believe it is a matter of not ever having an emotion, but rather how you approach that emotion, and how it manifests itself.

I would have to say that it is impractical to expect someone not to feel nervous, but how I deal with nervousness and how you do, most likely are two different approaches. Would you not agree that it is possible to change negative emotions to positive?

I don't see the connection between flickering lights and seizures brought on by becoming angry. I see these as two different triggers to be worked through. I can't remember if you were the one that said you can't wear polorized lenses. Is that an option?

I use to have a sensitivity to light. Migraines were my problem, and the intense sunlight here in CA was troublesome. Since taking magnesium and COQ10 for my migraines, I have not felt this same
"stab" to my head when walking outdoors. I do however use sunglasses most of the time outside.

I am certainly not saying that you are able to prevent all seizures. Though I do know for a fact that some can be prevented. It is up to each individual to attempt to find ways to do so... if they choose to.

[darkmarkshark]

the trembling occurs at the first sign of nervousness/anger. The jerking only occurs if I don't stop those thoughts/feelings in good time.

[RobinN]

So it seems that the nervousness and anger is where you need to focus your recovery on.
Would you agree?

[Zoe]

I've been on the EF forum since I was diagnosed 3 years ago, but I finally encountered my last straw there.

My seizures are caused by certain smells. But every time i've posted that on the other site I've been immediately told that I can't be having epilepsy, don't belong on there, must not know what a seizure is, am misunderstanding my doctor, etc. If I offer up a link that helps supports some seizures are caused by smells, I quickly find a message in my inbox letting me know that I've received an official warning for starting a fight and insulting others.

I also have seizures due to stress and flashing lights. And just today saw a thread where someone was warned because they had a problem with being told that photosensitive epileptics don't matter because they make up less than .00001% of people with epilepsy. (a fight had ensued but the person making the mean remarks wasn't warned, only the one who was standing up against them)

Well i'm not here to rant about that site, so I won't bring up the million other similar examples. All I want to know is will be called a loser, idiot, dummy etc for talking about having these kind of seizures here? and then be told I'll be banned for trying to start a fight if I do anything other than smile sweetly and say 'thank you, you are exactly right' in response?

I don't want to get involved in another place where I am treated like dirt just because my seizures don't fit into the most common molds.

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Hey, don't let the SOB's get you down. With a seizure disorder, you can expect to run into colossal ignorance and bigotry, including on the forums that are supposed to be supportive. You can just tune out individuals who turn you off, but the situation at the EFA may be more difficult. You may want to drop off that board if it isn't meeting your needs. Put yourself first. You don't need them or any other single group, you have a lot of choices on the internet. Just go where you fell comfortable and feel free to drop out of a group if they are not supportive.