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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 3Hours2Live on Tue, 2011-04-26 - 19:56
Hi Terry, In the last 30 to 40 years, I've tried all kinds of techniques to eliminate, stop, control, "trigger", my about monthly clusters of seizures. Neither relaxation nor stimulation techniques worked for me, but there is plenty of neurological literature that contends that many such techniques often work, especially with the seizures from the reflex epilepsies. My epilepsy seems to be totally distinct from any categorization of having reflex seizures. The clusters give me the most warning as I go to sleep, and I can somwhat delay them for a few hours by staying awake and alert. My daily random simple partial seizures don't respond in frequency to anything, including all the AEDs I've tried, but most of these seizures have been ecstatic seizures the last few years, with post-ictal negative emotions that often do respond to limbic "opposing-side" conditioning, maybe like the left-side versus right-side Limbic System crossover briefly described at: http://shaktitechnology.com/shiva/God%20Helmet/koren_principles.htm I think I've learned some different verbal behaviours that "bypass" a few of my older verbal behaviours that were disrupted by epileptic seizures, but this is much different than controlling the seizures (it is as if learning to write with my left hand after I lose the use of my right hand). The problem with seizures is still there (and with possible kindling, still enlarging), but I do things in a different manner to work around the seizures (there are examples where some bilingual people can still speak in the other language, even when an epileptic seizure stops speech in one language). If many kindling theories are true, the success of learning to minimize the behavioural effects of epileptic seizures by bypassing the focal point of the seizure through conditioning, is a benefit with a possible high neurological cost in the long term. I've always received negative feedback from other people and professionals for "doing things in a different manner", even when this difference resulted in the best test scores at university and employment exams. Some mentions of actively stopping reflex seizures are at: http://www.ncbi.nlm.nih.gov/pubmed/2494042 http://www.ncbi.nlm.nih.gov/pubmed/7923453 I tend to agree more with Peter Breggin's philosophy in his book "Toxic Psychiatry" about Mental Health issues generally. Still, I question many therapies (from Cognitive Behavioral Therapy to things like "tough love", Synanon, and more "religious" leaning therapies), but I'm probably biased by my own church experiences from "speaking in tongues" from seizures in youth, to by brushes with religious leaders, and my luck of the draw avoidance of The People's Temple tragedy. In Santa Cruz County California, various churches were close to directly promoting many alternative medicine therapies (from herbal tea diets to programs like Reflexology, and many, many, more). My being on Medicaid quickly shied away the promoters during the earliest encounters, and many of the remaining "programs" had characteristics of pyramid schemes that soon demanded money with promised returns. Epilepsy versus PNES with health insurance issues seem to involve secondary money issues more than health issues too (here in California, neither camp wants beyond token Medicaid patients). A near zero Carbohydrate diet (much like a very strict Dr. Atkin's diet) came the closest to minimizing the strength of my seizures to nearly unnoticeable or devoid levels, but the expense, and nearly impossibility of avoiding instances of hypoglycemia (with symptoms much like a different type of seizures), made the diet impracticable over long periods. With my ecstatic seizures being so much like those assigned by Dostoevsky to Prince Myshkin, I prefer the Skinnerian part as science, and I weight the spiritual parts more significant than the failed measurements (the rocks crumble to dust, when applied to TLE) through the pseudo-sciences of psychology and other social sciences more inspired by Auguste Comte's Godly intellectual atheists seeking predetermined freedom as a science with measures of randomness. (I've studied too much social science with things like SPSS, and the MMPI versus Dr. Donald Dork: http://books.google.com/books?id=rwpHAAAAMAAJ&dq=editions%3AeAdbEn-yZbcC&q=Dr.+Donald+Dork#search_anchor Amazon-dot-com has the newer edition of "Research Methods For Social Work" by Allen Rubin and Earl R. Babbie (2010), and the pages following the entries for the "MMPI" search results, return the preview around pages 198-205 giving an "other inverse view" of commonsense validities (the 3 questions re paranoia on page 200 most always get a snort or a laugh)). My doctors tend to call my migraines epileptic seizures, while ER tends to call my seizures migraines, and I want to call them whatever best works for my health (there's seems to be much less bias with the label "migraines" than the label "epilepsy", and in non-medical environments this is a benefit, but in a medical situation where reducing expense is top priority and/or dumping patients, it is a drawback). So, if I can judge the longer term consequences of available choices of various labels, I try to go with the label that benefits my health the most. The labels themselves are much like library reference systems. Literature, nor science, changes with a simple change in reference numbers (true-believers in hard-core number labels might yell that the sky is falling!!!). Tadzio

Re: PNES- NON EPILEPTIC SEIZURES

Submitted by victoria88 on Fri, 2009-01-23 - 07:35

i do. i have suffered from pnes for the past 4 years. dr's are still looking into the fact i have epi on top though as i have not been responding to therapy and ant-depressive meds and since ive been on anti-epi drugs im almost 2 months of not having a seizure....

 

i get mine from sever stress. i know its more common in adolescent women. pnes is dangerous physically because if someone falls during a seizures, it's same danger as those with epi. but pnes just means the electrical activity in brain stays normal and means he might have this as there is some stress or anxiety that needs to be dealt with. it's good in some ways as it may mean he may get to a point where he will not longer have seizures all together.... other ways some people i know are dihearted by this diagnosis and it may be scarey as some people have asked me that does pnes mean im faking them!

 

i hope lots of love to your son that everything may start getting better x

 

 

i do. i have suffered from pnes for the past 4 years. dr's are still looking into the fact i have epi on top though as i have not been responding to therapy and ant-depressive meds and since ive been on anti-epi drugs im almost 2 months of not having a seizure....

 

i get mine from sever stress. i know its more common in adolescent women. pnes is dangerous physically because if someone falls during a seizures, it's same danger as those with epi. but pnes just means the electrical activity in brain stays normal and means he might have this as there is some stress or anxiety that needs to be dealt with. it's good in some ways as it may mean he may get to a point where he will not longer have seizures all together.... other ways some people i know are dihearted by this diagnosis and it may be scarey as some people have asked me that does pnes mean im faking them!

 

i hope lots of love to your son that everything may start getting better x

 

 

Re: PNES- NON EPILEPTIC SEIZURES

Submitted by rikk on Fri, 2009-01-23 - 07:42
it may be they can not find any abnormal activity.  it may be other factors, i am sure there is more information, some that you are not aware of, or things the docs have not found yet.  sometimes the direct source of seizures is difficult to find.  they may keep trying different meds.  there is really  no draw in the line definite diagnosis of pnes.  i hope they find out the why, and a successful treatment,  more i hope that they find a successful treatment.  hope it helps.  rikk

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