PNES- NON EPILEPTIC SEIZURES

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Hello there. I just wanted to know if there is anyone that is living with pnes... My sister has been told she has this and it is very confusing. I have done some research on this condition..but would like to hear from anyone who has this. I just have some questions about his condition.. right now my sister is in the hospital and i amjust trying to gain a better understanding for her and us.. Thank you..edie

Comments

Hello,I grew up as a healthy

Submitted by BeautifulSunset on Fri, 2017-10-06 - 00:08

Hello,I grew up as a healthy kid until i had an accident at work resulting in a seizure... still dont know why was hospitalized for almost 4 months..was told id never walk again but guess what i am!! For me stress brings them on or not enough sleep....i have been having them more frequently and im in my last year of college mskes me wonder if i can do the job.. Jill helped me walk again shes a Kinesioloist i do not have sciences much so im doing Therapeutic Recreation...i love it i think having this condition helps me relate to the clients that suffer with seizures and how the world protrays us as a people thinking were uncabable...its been hard to accept for me... I honestly hoped it would go away or be a bad dream but i get warning signs i get weak, dizzy, head ache, i shake, i see black flying objects in my eyes and my ears ring.. i do go unconscious which is upsetting because people think doctors will help us but really they dont... its sleep and proper food...i find SALT really helps when i feel a seizure come on.. i am going to try the rock touching some mentioned... i have found that standing still affects me as well at times so i shift my feet around to distract myself...Ive had soooo many guys leave me cause of this condition but i have the most amazing boyfriend now he picked my life up and turned it around..I have also been strong in my faith till my seizure happened i was sooo mad why God? I thought of the verse jer 29:11 thinking if these are his good plans for me i want nothing to do with him but i found myself still praying which is just talking to God say whats on your mind like what the fuck God your making me live in hell cause of the body you put me in... God wants us to be real with our feelings and situations... Everyone has a different opinion of God even pastors!! Before you read the Bible say God teach me something today speak to my heart...Going through this im not as much of a people pleaser...i want to help people all walks of life but im not worried if someone doesnt like me... smaller circle of friends isnt bad less drama and more quality of friendship over quantity... the more friends you have the more that could turn their back on you...My suggestion is to go out and be a support to someone even a stranger like in a nursing home some of those people never get visitors go in and talk to one person ask them about themselves.. make them feel valued and important.. Ive had these seizures since 2011... mine too were believed to be epileptic seizures but the meds never helped i went psychotic because the doctors put so many different kinds of meds into my system..I have my good days and bad..day by day life isnt a race we all just gotta thrive in our circumstances to play the cards we have been dealt to the best of our abilty.. fake it till you make it... also talking to my boyfriend releaves my stress and i take candle light baths..gotta have someone to talk to glad i came across this post i have felt sooooo alone...suffering with this disease! Thanks for taking the time to read.... good luck in your journey!! Have a good day!!!

Hello,I grew up as a healthy kid until i had an accident at work resulting in a seizure... still dont know why was hospitalized for almost 4 months..was told id never walk again but guess what i am!! For me stress brings them on or not enough sleep....i have been having them more frequently and im in my last year of college mskes me wonder if i can do the job.. Jill helped me walk again shes a Kinesioloist i do not have sciences much so im doing Therapeutic Recreation...i love it i think having this condition helps me relate to the clients that suffer with seizures and how the world protrays us as a people thinking were uncabable...its been hard to accept for me... I honestly hoped it would go away or be a bad dream but i get warning signs i get weak, dizzy, head ache, i shake, i see black flying objects in my eyes and my ears ring.. i do go unconscious which is upsetting because people think doctors will help us but really they dont... its sleep and proper food...i find SALT really helps when i feel a seizure come on.. i am going to try the rock touching some mentioned... i have found that standing still affects me as well at times so i shift my feet around to distract myself...Ive had soooo many guys leave me cause of this condition but i have the most amazing boyfriend now he picked my life up and turned it around..I have also been strong in my faith till my seizure happened i was sooo mad why God? I thought of the verse jer 29:11 thinking if these are his good plans for me i want nothing to do with him but i found myself still praying which is just talking to God say whats on your mind like what the fuck God your making me live in hell cause of the body you put me in... God wants us to be real with our feelings and situations... Everyone has a different opinion of God even pastors!! Before you read the Bible say God teach me something today speak to my heart...Going through this im not as much of a people pleaser...i want to help people all walks of life but im not worried if someone doesnt like me... smaller circle of friends isnt bad less drama and more quality of friendship over quantity... the more friends you have the more that could turn their back on you...My suggestion is to go out and be a support to someone even a stranger like in a nursing home some of those people never get visitors go in and talk to one person ask them about themselves.. make them feel valued and important.. Ive had these seizures since 2011... mine too were believed to be epileptic seizures but the meds never helped i went psychotic because the doctors put so many different kinds of meds into my system..I have my good days and bad..day by day life isnt a race we all just gotta thrive in our circumstances to play the cards we have been dealt to the best of our abilty.. fake it till you make it... also talking to my boyfriend releaves my stress and i take candle light baths..gotta have someone to talk to glad i came across this post i have felt sooooo alone...suffering with this disease! Thanks for taking the time to read.... good luck in your journey!! Have a good day!!!

Hello,I grew up as a healthy kid until i had an accident at work resulting in a seizure... still dont know why was hospitalized for almost 4 months..was told id never walk again but guess what i am!! For me stress brings them on or not enough sleep....i have been having them more frequently and im in my last year of college mskes me wonder if i can do the job.. Jill helped me walk again shes a Kinesioloist i do not have sciences much so im doing Therapeutic Recreation...i love it i think having this condition helps me relate to the clients that suffer with seizures and how the world protrays us as a people thinking were uncabable...its been hard to accept for me... I honestly hoped it would go away or be a bad dream but i get warning signs i get weak, dizzy, head ache, i shake, i see black flying objects in my eyes and my ears ring.. i do go unconscious which is upsetting because people think doctors will help us but really they dont... its sleep and proper food...i find SALT really helps when i feel a seizure come on.. i am going to try the rock touching some mentioned... i have found that standing still affects me as well at times so i shift my feet around to distract myself...Ive had soooo many guys leave me cause of this condition but i have the most amazing boyfriend now he picked my life up and turned it around..I have also been strong in my faith till my seizure happened i was sooo mad why God? I thought of the verse jer 29:11 thinking if these are his good plans for me i want nothing to do with him but i found myself still praying which is just talking to God say whats on your mind like what the fuck God your making me live in hell cause of the body you put me in... God wants us to be real with our feelings and situations... Everyone has a different opinion of God even pastors!! Before you read the Bible say God teach me something today speak to my heart...Going through this im not as much of a people pleaser...i want to help people all walks of life but im not worried if someone doesnt like me... smaller circle of friends isnt bad less drama and more quality of friendship over quantity... the more friends you have the more that could turn their back on you...My suggestion is to go out and be a support to someone even a stranger like in a nursing home some of those people never get visitors go in and talk to one person ask them about themselves.. make them feel valued and important.. Ive had these seizures since 2011... mine too were believed to be epileptic seizures but the meds never helped i went psychotic because the doctors put so many different kinds of meds into my system..I have my good days and bad..day by day life isnt a race we all just gotta thrive in our circumstances to play the cards we have been dealt to the best of our abilty.. fake it till you make it... also talking to my boyfriend releaves my stress and i take candle light baths..gotta have someone to talk to glad i came across this post i have felt sooooo alone...suffering with this disease! Thanks for taking the time to read.... good luck in your journey!! Have a good day!!!

My wife has a similar

Submitted by Sjwebb64 on Mon, 2018-11-19 - 23:38

My wife has a similar situtation. I feel like it might be linked to also to Narcotic use since she is on a pain management regimen. I am trying to find answers too as we all are. Anything may help.

My daughter began having

Submitted by jrwittner on Sat, 2019-03-09 - 04:15

My daughter began having anxiety-induced PNES in April 2018 at age 15. She has tried a number of medications to address her anxiety and PNES. She began using the Clonidine transdermal patch at the beginning of January 2019--starting at .1 mg/day, and moving up to .2 mg/day. Since then, her anxiety and PNES have both markedly improved. Currently (March 2019) she is almost seizure free.