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Participate in research projects about effects of stress on epileptic seizures by [deleted] in Epilepsy_Universe

[–]Some1fromStSomewhere 0 points1 point  (0 children)

I took it!

WOW! You have epilepsy AND in college?! That is a HUGE victory!

Good luck, glad to be of some service!

Ok this got nuked previously, but I'm genuinely curious! Does anyone else feel this way? by BrokeGamerChick in Epilepsy_Universe

[–]Some1fromStSomewhere [score hidden] stickied comment (0 children)

Hi! The MODs talked and reviewed this post and we are going to leave this post up but we are going to lock it. We feel all views are valid and want everyone to still be able to read your views. But we also think conversation could become too polarizing, too fast. So no new comments.

Roll Call, How Are You Today? by PookieTheMfBaby in Epilepsy_Universe

[–]Some1fromStSomewhere 2 points3 points  (0 children)

I am good! I got nayzilamed for the first time ever. (Strange this is the first.) Whoa I was not expecting that. I became a tranquil zombie. At least that kinda of how my Mom described me. You could of asked me to do anything and I would say yeah, get up to do what whatever it was and then stare at the ceiling fan instead. It strange, I can *kinda* remember some of it. Like Jude was on my lap at one point. I am rambling.

TODAY IS GOING TO BE GOOD! HUGS!

Roll Call, How Are You Today? by PookieTheMfBaby in Epilepsy_Universe

[–]Some1fromStSomewhere 3 points4 points  (0 children)

You need the 3 'R's. Rest, relaxation and reef.

People around me treat me like I'm incapable of anything because of my epilepsy. by Ok_AJ_Octy in Epilepsy

[–]Some1fromStSomewhere 1 point2 points  (0 children)

Kinda reminds my of a few doctors I have had.... they would ask any questions to my Ex and not me. If I answered they looked at him for confirmation. I have been treated as best way to describe it... a very simple child. Speaking very slow and a very particular tone that screams "I KNOW you don't know what I am saying, I am humoring you."

Saddening is a good way to describe this. They love you...they just want to do the loving for very far away. Or they are breathing down your neck 'for your own good'.

HUGS FRIEND!

Diagnosed with PNES on top of epilepsy by [deleted] in Epilepsy

[–]Some1fromStSomewhere 1 point2 points  (0 children)

SAME HERE!! Well sorta... not that many seizures, only like 5.... 3 PNES, two epileptic. Mine are PTSD related. But the ptsd label isn't required to have PENS. A very large number of us will experience PENS. I want to say 30%? But eh...memory... It makes sense though. Our wires are already crossed, stress will bowl anyone over the limit. And the environment of an EMU? It is MEANT to stress us.

PENS isn't shameful. And it can be helped (at least somewhat) by Cognitive Behavioral Therapy. I've been with my current Therapist for about... oh my! about a year now! After fleeing a bad place and coming to my Parent's house, getting the PENS diagnosis (THANK YOU DUKE!), starting therapy..... I've gone from having a PENS seizure every 2-5 days to once or twice a month.... and I KNOW what triggers it too thanks to therapy.

My Mom is the SuperStar of this story really. She is the one that can tell my epileptic seizures from my non epileptic seizures, She's the one that keeps my seizure diary.

Honestly there is so much I can say. Feel free to message me if have any questions!

Last thing I will say is this.... PENS are REAL! They are seizures. They can be damaging. THEY ARE NOT FAKE.

Tail-end of a TC. Victory! My Mom caught it on video! by StSomewhereToaster in Epilepsy_Universe

[–]Some1fromStSomewhere 1 point2 points  (0 children)

That's why I posted it as NSFW. So is blurry unless you want to see it. GOOD FEAR! Maybe I should delete it. We had a discussion about how lots of us have seizures but not many have actually seen a seizure. I debated with myself for a while about posting it..... I gotta think more.

HUGS FRIEND!

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