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PNES- NON EPILEPTIC SEIZURES

Wed, 11/12/2008 - 17:45
  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

Re: PNES- NON EPILEPTIC SEIZURES

Submitted by kris614 on Wed, 2009-10-28 - 12:47

Hello

My name is Kris and I have had PNES since the age of 15.  Yes it is really difficult not to be able to work or especially drive.  I as well have family who feel I am Faking these events.  I have them often and they appear epileptic but my brain wave has not changed during them.  I like my current doctor at Lehay Clinc in Burlington.  Ritu Baggla is her name.  Does anyone know how to find a mental health clinician who has experience in PNES? 

 

Thank You

Kris

Hello

My name is Kris and I have had PNES since the age of 15.  Yes it is really difficult not to be able to work or especially drive.  I as well have family who feel I am Faking these events.  I have them often and they appear epileptic but my brain wave has not changed during them.  I like my current doctor at Lehay Clinc in Burlington.  Ritu Baggla is her name.  Does anyone know how to find a mental health clinician who has experience in PNES? 

 

Thank You

Kris

Re: PNES- NON EPILEPTIC SEIZURES

Submitted by chris.the.wanderer on Sat, 2009-07-11 - 18:22

I live with PNES. Though i just figured that out looking at your web page right here. So i don't have alot to offer you. Just know that your not alone.

I live with PNES. Though i just figured that out looking at your web page right here. So i don't have alot to offer you. Just know that your not alone.

Re: PNES- NON EPILEPTIC SEIZURES

Submitted by melchizedek on Sun, 2009-08-30 - 17:56

I am writing for my wife who was recently diagnosed with PNES. She began having seizures/episodes/events in december of 2007 after a very bad reaction to the drug seroquel. She was post back surgery when this occured.

My wife has contractions in her abdomen, curling toes, pain in one or both knees and intermittent pain in her neck. She has four (4) of these every day. The only thing that seems to help is percocet, but that is an unacceptable treatment and we want to be free of that as well. But when the medical community offers no relief you use what works.

She was given a video monitored EEG on the 10th of August. In a twelve hour period she had 12 seizures. She is in a state of continuous discomfort and is usually worn down by these events. As some or all of you are aware this 'thing' takes over your life. Couple that with a medical community that has limited knowledge or experience with this condition leaves one at times feeling desperate.

In addition she has the sleep disorder NARCOLEPSY which I have recently learned is common in those who have a seizure disorder.

We are in the process of moving closer to family and a new set of doctors. Perhaps these new 'eyes' will offer more hope. Up to this point most medical people do not understand this malady and therefore do not want anything to do with it.

We are looking for those individuals and families who are living with the same condition. The purpose being mutual support and sharing of experiences.

My wife and I are in our late sixties.

I am writing for my wife who was recently diagnosed with PNES. She began having seizures/episodes/events in december of 2007 after a very bad reaction to the drug seroquel. She was post back surgery when this occured.

My wife has contractions in her abdomen, curling toes, pain in one or both knees and intermittent pain in her neck. She has four (4) of these every day. The only thing that seems to help is percocet, but that is an unacceptable treatment and we want to be free of that as well. But when the medical community offers no relief you use what works.

She was given a video monitored EEG on the 10th of August. In a twelve hour period she had 12 seizures. She is in a state of continuous discomfort and is usually worn down by these events. As some or all of you are aware this 'thing' takes over your life. Couple that with a medical community that has limited knowledge or experience with this condition leaves one at times feeling desperate.

In addition she has the sleep disorder NARCOLEPSY which I have recently learned is common in those who have a seizure disorder.

We are in the process of moving closer to family and a new set of doctors. Perhaps these new 'eyes' will offer more hope. Up to this point most medical people do not understand this malady and therefore do not want anything to do with it.

We are looking for those individuals and families who are living with the same condition. The purpose being mutual support and sharing of experiences.

My wife and I are in our late sixties.

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