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PNES- NON EPILEPTIC SEIZURES
Wed, 11/12/2008 - 17:45Comments
Your story sounds very
Submitted by True Believer on Sun, 2019-10-20 - 22:27
Re: PNES- NON EPILEPTIC SEIZURES
Submitted by jehcancer31 on Thu, 2011-02-10 - 23:15
Hello my name is Jessica,
Let me just start by saying I know what your son must be going through. When I was 16 I was also diagnoised with having epilepsy due to a minnor car acident. For 14 years of my life I believed the doctors diagnosis was correct. But as I got older my seizures tended to get worse and happen more offen then not. Because of this my doctor kept prescribing new medications or upping my dose. But still nothing was helping, not only was I still having seizures I was also very depressed. It wasn't until April of 2009 that my wonderful parents and I decided to get more tests done and I was taken to Stanford Medical Hospital. There I stayed over night for 3 nights and was hooked up to an EEG monitor as well as videographed. According to the doctors tests I didn't have epilepsy, like your son I was told I have Psycogenic Non-Epileptic Siezures (PNES). This they confirmed by the EEG monitor because every time I thought I was having what I believed to be an epileptic seizure it still never spiked on the machine. Also unlike epileptics I can remember everything that happens when I have a seizure, ask your son if he can, would like to know. One of the first things the doctors at Stanford told me was that we needed to get all the poison (epileptic meds) out of my body. At the time I was on 4 different medications including one for depression. Almost two years have passed since Stanford and I feel so much better for it. Not only I'm I off all that medicine, but I'm also not depressed, and having less seizures. I still find that stress and anxeity are the biggest things that set it off for me. I hope like me your son will find that just finding out it's not epilepsy is 75% of the cure. Although for people like us we have to work on the other 25% which for me is meditation and breathing exercises, writing my thoughts in a journal, talking and communicating with family about it and trying to meet with a psychiatrist twice a month. Well I know I probably went way over in talking about this but let your son know there more people then he thinks out there who are going through the exact same thing. So good luck to you and yours, and may your son's future be siezure free.:)
Hello my name is Jessica,
Let me just start by saying I know what your son must be going through. When I was 16 I was also diagnoised with having epilepsy due to a minnor car acident. For 14 years of my life I believed the doctors diagnosis was correct. But as I got older my seizures tended to get worse and happen more offen then not. Because of this my doctor kept prescribing new medications or upping my dose. But still nothing was helping, not only was I still having seizures I was also very depressed. It wasn't until April of 2009 that my wonderful parents and I decided to get more tests done and I was taken to Stanford Medical Hospital. There I stayed over night for 3 nights and was hooked up to an EEG monitor as well as videographed. According to the doctors tests I didn't have epilepsy, like your son I was told I have Psycogenic Non-Epileptic Siezures (PNES). This they confirmed by the EEG monitor because every time I thought I was having what I believed to be an epileptic seizure it still never spiked on the machine. Also unlike epileptics I can remember everything that happens when I have a seizure, ask your son if he can, would like to know. One of the first things the doctors at Stanford told me was that we needed to get all the poison (epileptic meds) out of my body. At the time I was on 4 different medications including one for depression. Almost two years have passed since Stanford and I feel so much better for it. Not only I'm I off all that medicine, but I'm also not depressed, and having less seizures. I still find that stress and anxeity are the biggest things that set it off for me. I hope like me your son will find that just finding out it's not epilepsy is 75% of the cure. Although for people like us we have to work on the other 25% which for me is meditation and breathing exercises, writing my thoughts in a journal, talking and communicating with family about it and trying to meet with a psychiatrist twice a month. Well I know I probably went way over in talking about this but let your son know there more people then he thinks out there who are going through the exact same thing. So good luck to you and yours, and may your son's future be siezure free.:)
Re: PNES- NON EPILEPTIC SEIZURES
Submitted by terter on Tue, 2011-08-16 - 15:32
UPDATE by terter! I am making an amazing recovery!!! After years of PNES....just finding out that I had them not even too long ago...I nearly have them under control...I say nearly as I am a work in progress! My therapist and I discovered by trial and error, talking and me keeping a journal, that these are my triggers: -stress leading to anxiety -anger -fear The above triggers have come from what happened to me during our family battle with Lyme, and now the same triggers for everyday life stressors as well. Here is what I am doing for PNES... -I am reaching back bit by bit in my mind to see which doctor did me wrong or treated me terribly or misunderstood me, and I am addressing each issue. For example, I won my second appeal to have my insurance pay for 2 days extra for me before I was diagnosed with PNES..while I was in a rehab/nursing home. I was being discharged suddenly without giving me a reason..I got hysterical as I was not walking or allowed in a wheelchair due to so many seizures....I signed a form saying I would pay for two extra days so I could get a plan together to get home. My insurance company saw that this was lunacy and paid for it! TADA...I am getting some power back as Dr. Phil would say! -I reported the doctor in that facility for discharging me without giving me a reason, neglecting me as he would not answer any of my calls, and his office people told me I couldn't talk to him at the office as I was NOT a patient...that I should WALK over! Geeze, I was really hysterical then..I told them I was in the nursing home because I could not walk!!! Talk about being furious. Well, they are reported and being looked into by my insurance. -I forgave a doctor for some of his treatment modalities for Lyme were questionable, as he had Lyme Psychosis and committed suicide. -I am learning to say...."sorry you feel that way"...and other things as to not invite confrontation from some people. I am learning my emotional limits right now. What I found out about myself was that if I go over each problem and DO something about it, I feel stronger...not at the mercy of suppressed anxiety! When I first spoke about each incident (I have many awful stories) I had seizures...my therapist saw this, as did I, and we didn't have to be a genius to see the impact doctor abuse had on my psyche! Keeping a journal of sorts, lets me see where my stressors and anxieties and fear lie. Then we deal with each issue. I try to seperate myself from the pain, and just talk it out. Then I practice relaxation techniques if possible. If not, I try to do purposeful movement like pacing, swinging my leg, slapping my thighs...anything to not have a seizure. If the above does not work and I have one in therapy...or more, or even have trouble walking....I just wait it out..take a Klonopin...wait and wait and then when I have let off that built up steam of a seizure...I try not to feel defeated, but assure myself as does my therapist, that I AM making tremendous progress. I went from being totally wheelchair and bed bound, to driving and shopping and gardening...even had a baby shower for my daughter! My husband and I are going to be grandparents for the first time. It is so liberating and thrilling to know that I have a future filled with promise! It all started with accepting my PNES! Then I knew I had to fight...then I found out that I have to be gentle with myself and learn what the true triggers were, and WHY. I still have a twitch here and there, or a seizure that lasts a second...longer in therapy sometimes as I feel it is "safe" there...I am so much better and I see such an incredible future ahead as I continue to progress and understand myself. I hope that I am offering hope to others! Take care all...I am looking forward to hearing from other PNES people...I feel kind of alone in my neck of the woods! terter