Epilepsy & Seizures Support Group

Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...

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Brain & Nervous System
/ Epilepsy & Seizures Support Group

Have PNES and mad with site.

proudaunt
proudaunt
A recent post from a mother who said her daughter was diagnosed with Non-epileptic seziures. I AGREE the mother should have more testing done to confirm her diagnosis and more EEGs.

But for those who responded let me tell you PNES is very real. My Uncle had epilepsy and know it is worse. But that does not make us fakers. Some of the people I have become friends with, have seizures 20-30 a day. We all started with possible epilepsy. I was sent for 10 days to the epilepsy unit for 24/7 eeg's and viedo taping. They could see the seizure on viedo but nothing on EEG. After three different neurologist looked at it and determined it was PNES.

Trust me I would never ask to have this or fake it. They are vey really I have had them walk on main roads to shopping in the mall.

Please take the time to be educated before you throw knifes.
deleted_user
deleted_user
I'm going to apologize to you for whomever it was that was so insensitive as to repsond in a direspectful manner towards PNES and non-epileptic seizures. That's just awful and has no place on this site.
Until I joined this site I had never known about that and I've had seizures my entire life. To be sure, ANY type of seizure is not fun nor is there anything fake, funny or even remotely close to being easy to deal with. Every case is individual and different and needs to be treated as such. What it still comes down to is that this is an illness that is difficult to understand because we can't see it as it's happening until the seizure occurs. It is my hope that whoever wrote whatever hurt you sees this response too and develops a conscience.
proudaunt
proudaunt
Thanks for understanding. It is so hard to be called a fake, a wacko. Your response means alot to me.
deleted_user
deleted_user
I'm glad. I have had to listen to members of my own family tell me "You never feel well." or "You always have a headache!" Yep! it's true, those are statements that are true. I find it amazing how many others think they can TELL you what to DO for your body as if YOU DON'T know your own body well enough....maybe they are trying to be helpful with suggestions, however, they need to understand that if we say we have tried the suggestion and it didn't work, WE ARE NOT being difficult and we are not malingerers. My family has made many decisions for me without asking me. I know it's all in the name of caring but it crosses boundaries too. I'm a grown woman who raised a child alone. He went to college, did well and lives on his own now. I'm not incompetent and neither are you! Your boundaries were crossed and that's not a nice thing for anyone to have happen to them. We aren't fakers or anything else....I would simply say, if you want...."Walk in my shoes..." Good luck to you!
deleted_user
deleted_user
I'm glad. I have had to listen to members of my own family tell me "You never feel well." or "You always have a headache!" Yep! it's true, those are statements that are true. I find it amazing how many others think they can TELL you what to DO for your body as if YOU DON'T know your own body well enough....maybe they are trying to be helpful with suggestions, however, they need to understand that if we say we have tried the suggestion and it didn't work, WE ARE NOT being difficult and we are not malingerers. My family has made many decisions for me without asking me. I know it's all in the name of caring but it crosses boundaries too. I'm a grown woman who raised a child alone. He went to college, did well and lives on his own now. I'm not incompetent and neither are you! Your boundaries were crossed and that's not a nice thing for anyone to have happen to them. We aren't fakers or anything else....I would simply say, if you want...."Walk in my shoes..." Good luck to you!
deleted_user
deleted_user
I'm glad. I have had to listen to members of my own family tell me "You never feel well." or "You always have a headache!" Yep! it's true, those are statements that are true. I find it amazing how many others think they can TELL you what to DO for your body as if YOU DON'T know your own body well enough....maybe they are trying to be helpful with suggestions, however, they need to understand that if we say we have tried the suggestion and it didn't work, WE ARE NOT being difficult and we are not malingerers. My family has made many decisions for me without asking me. I know it's all in the name of caring but it crosses boundaries too. I'm a grown woman who raised a child alone. He went to college, did well and lives on his own now. I'm not incompetent and neither are you! Your boundaries were crossed and that's not a nice thing for anyone to have happen to them. We aren't fakers or anything else....I would simply say, if you want...."Walk in my shoes..." Good luck to you!
deleted_user
deleted_user
I'm glad. I have had to listen to members of my own family tell me "You never feel well." or "You always have a headache!" Yep! it's true, those are statements that are true. I find it amazing how many others think they can TELL you what to DO for your body as if YOU DON'T know your own body well enough....maybe they are trying to be helpful with suggestions, however, they need to understand that if we say we have tried the suggestion and it didn't work, WE ARE NOT being difficult and we are not malingerers. My family has made many decisions for me without asking me. I know it's all in the name of caring but it crosses boundaries too. I'm a grown woman who raised a child alone. He went to college, did well and lives on his own now. I'm not incompetent and neither are you! Your boundaries were crossed and that's not a nice thing for anyone to have happen to them. We aren't fakers or anything else....I would simply say, if you want...."Walk in my shoes..." Good luck to you!