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Dealing with both NES and ES

Mon, 05/13/2013 - 20:24
I went for week long VEEG in march had MRI showed one hippocamus significantly smaller then the other during veeg i had one small one show upand the last night i was thier i had one aswell but big blank spot. Ihad seizures as a child diagnosed at 11 had several different meds tried. Well Dr diagnosed me with prob NES during follow Aptt. Primary doctor after review and contact with other Dr I have ES and NES. So WTF, I am angry about it either way .how do i know if it is either. I feel some people believe it is for attention (LACK OF ACTUALLY) OR faking. yes I want NES and ES I love doing wired stuff and twiching, jerking and losing stuff and losing chunks of time and so much more. How do i get over being ashamed or embassed about the NES and ES. I am excited because my meds are starting to work as my blood level is up. So less Seizures

Comments

Re: Dealing with both NES and ES

Submitted by 3Hours2Live on Wed, 2013-05-15 - 04:55
Hi AkUnKnown24, My favorite book about Non-Epileptic Seizures is "The Imitators of Epilepsy" by Kaplan & Fisher (2005): http://www.ncbi.nlm.nih.gov/books/NBK7321/ The last three chapters in the book are my least favorite, esp. 19 & 21: Chapter 19. Psychiatric Aspects of Nonepileptic Seizures: Psychogenic NES - John R. Gates, MD. Chapter 20. Coexisting Epilepsy and Nonepileptic Seizures - Allan Krumholz, MD and Tricia Ting, MD Chapter 21. Panic Attacks and Panic Disorders: The Great Imitators - Meghan M. Grady, BA and Stephen M. Stahl, PhD, MD. After my university, many doctors couldn't differentiate between my migraines and my epileptic seizures. In my infancy, I had a few "blue baby" death episodes where I would regain life with seizures (in retrospect, sounds like LQTS-2, but many signs of neurocutaneous disorders also, which may be the underlying "cause" for all the consequential impairments). With the Atkin's Diet, at Zero Carbohydrates, I discovered the effects of hypoglycemia, and, later, "reactive" hypoglycemia (dose up on sugar, blood sugar rapidly peaks & suddenly crashes to very low levels), with seizure-like effects (easily differentiated from epileptic seizures by a simple blood sugar test revealing very low blood sugar levels). The often pseudo-science of psychology is frequently confounded by epilepsy, as epilepsy can be carelessly mistaken as most any of DSM-ed disorders (my strongest formal studies involved the MMPI, while I preferred Skinnerian Behaviourism as an approach & as a psychological philosophy). IMO, the severe flaws in findings of PNES are easily revealed by using Venn Diagrams (though some contention results from trying to excuse the appearances by arguments of prevalence versus incidence, despite an acknowledged ten-fold typo error took hold & spread well beyond easy correction). Some of the links are still valid in forums posted here at epilepsy-dot-com under a search for "Venn". Some links are now different, as I listed in a previous forum: "....A good exercise in the power of critical thinking is looking for all the flaws of logic in the paper "The differential diagnosis of epilepsy: A critical review" by S. Benbadis (Epilepsy & Behavior 15 (2009) 15–21): http://old.epilepsyfoundation.org/epilepsyusa/yebeh/upload/Differential_diagnosis_of_epilepsy.pdf References citing http://www.ncbi.nlm.nih.gov/pubmed/2927677 reveals: " We detected epileptiform discharges in 61 of 68 subdurally recorded simple partial seizures compared with 6 of 55 simple partial seizures recorded with scalp electrodes," so, there's a downplayed big problem for the "Gold Standard". The next very interesting article here with Dr. Benbadis is "USING PROVOCATIVE TESTS TO DIAGNOSE PSYCHOGENIC NON-EPILEPTIC SEIZURES TWO POINTS OF VIEW: MEDICAL AND ETHICAL" at: http://professionals.epilepsy.com/page/hallway_provocative_tests.html An audio interview with Dr. Benbadis can be found in a search on epilepsy-dot-com for "Benbadis" or maybe at: http://www.blogtalkradio.com/epilepsy/2009/07/13/epilepsycomprofessionals-hallway-conversations-interview-with-dr-selim-benbadis As B.F. Skinner coined the term "operant", as in "operant conditioning", the book "Gates and Rowan's Nonepileptic Seizures", edited by Schachter & LaFrance Jr. (2010) is rather awkward in not referencing Skinner, at least not in the previews available to me. The larger problem is the failure to justly recognize that epileptic seizures result in inadvertent conditioning, both in the Pavlovian & operant sense. And, to top that off, epilepsy experts usually lecture to epileptics that they should take protective action upon most any sign or symptom of an impending stronger seizure (valid signs & symptoms are very minor epileptic seizures, often undetectable with EEG scalp electrodes), then, the experts later regard the compliance to their own advice as indicators of Psychogenic Non-Epileptic Seizures when larger seizures don't develop (either by chance or by partially effective AED medication). Search in the book for the word "operant" or for the book at amazon-dot-com, and yes, it seems that this simple careless mistake may very well be present multiple times. (The intense power of aversive Pavlovian (classical) conditioning was exemplified in the movie "A Clockwork Orange", though the movie somewhat ignored that the extinction of such conditioning is very troublesome (extinction often can't be accomplished successfully (just think of "shell-shock"))). For "faking", "AN AUTOPSY ON THE FAKE BAD SCALE: THE POLITICAL AND SCIENTIFIC RAMIFICATIONS OF THE METHODOLOGY AND APPLICATION OF THE FAKE BAD SCALE AGAINST PERSONS WITH BRAIN IMPAIRMENT" By: Sims, Dorothy, JD, Perrillo, Richard, Ph.D., Berman, Richard, JD. http://www.internationalbrain.org/articles/an-autopsy-on-the-fake-bad-scale/ Tadzio P.S.: Many PNES studies have the unusual characteristic of matching crude number distributions indicative of mistakes with Baysian Statistics. In probability studies, the two easiest trap-door examples are the "Monty Hall Paradox" and "Counting Cards In Blackjack".

Re: Dealing with both NES and ES

Submitted by pewter on Fri, 2013-05-17 - 15:19

My MRI, taken just after I started having the "spells", showed one Hippocampi much smaller than the other... this, the D.O. said was an abnormality.  I had an MRI several years before a car wreck that started these "spells" and all were clear.  So, she noted the abnormality as a reason - she told me. 

That said, and the symptoms I reported during my "spells", she diagnosed me with Partial Complex Seizure Disorder and prescribed topiramate.

 Ok... only, 2 months later when I incurred an adverse reaction with topiramate.. she prescribed Zonasmide.  Only, I'm allergic to Sulfa and the pharmacist told me to talk to the D.O. (which should've known cause it's in my records).  So, immediately... I'm then diagnosed with PNES... 2 months AFTER I was diagnosed with PCs.

No video EEG... just 2 EEgs (1 sleep deprived) and a intolerance to the 1 medication she had prescribed (topiramate) at the higher dosages I had gotten to on that medication and that the 2 EEGs that had been performed - thus far - that showed nothing.

The resident neuros i've had since her, 2 of them now... just follow suit that they are PNES.  Still no video EEG and they do not bother to ask about my episodes and when I've told them of their changing and frequency... I just get smiles and am told "we'll just keep doing what we are doing now."  which is nothing, actually.

I was told that I could do a video EEG, would stay 3-5 days but the last resident neuro ASSURED me that she'd catch one within that time, with a smile on her face... when I asked her what would happen if I did not have one to note for them to check?  Yep, smiled and assured me and if not, "we'll just keep doing what we are doing and we'll have you come in again at some point down the road."

someone tell me HOW a Neuro can ASSURE someone that they'll catch one on a video EEG?

so that, and her note on the appt prior stating how she felt the improvement i was incurring from the smaller dosage of topiramate surely must be placebo... i've stopped seeing a neuro, for the time being

 once i get insurance and money... i'm going to a private neuro not affiliated with the same ACC teaching hospital I've been forced to go to since 2008

 

 

 

My MRI, taken just after I started having the "spells", showed one Hippocampi much smaller than the other... this, the D.O. said was an abnormality.  I had an MRI several years before a car wreck that started these "spells" and all were clear.  So, she noted the abnormality as a reason - she told me. 

That said, and the symptoms I reported during my "spells", she diagnosed me with Partial Complex Seizure Disorder and prescribed topiramate.

 Ok... only, 2 months later when I incurred an adverse reaction with topiramate.. she prescribed Zonasmide.  Only, I'm allergic to Sulfa and the pharmacist told me to talk to the D.O. (which should've known cause it's in my records).  So, immediately... I'm then diagnosed with PNES... 2 months AFTER I was diagnosed with PCs.

No video EEG... just 2 EEgs (1 sleep deprived) and a intolerance to the 1 medication she had prescribed (topiramate) at the higher dosages I had gotten to on that medication and that the 2 EEGs that had been performed - thus far - that showed nothing.

The resident neuros i've had since her, 2 of them now... just follow suit that they are PNES.  Still no video EEG and they do not bother to ask about my episodes and when I've told them of their changing and frequency... I just get smiles and am told "we'll just keep doing what we are doing now."  which is nothing, actually.

I was told that I could do a video EEG, would stay 3-5 days but the last resident neuro ASSURED me that she'd catch one within that time, with a smile on her face... when I asked her what would happen if I did not have one to note for them to check?  Yep, smiled and assured me and if not, "we'll just keep doing what we are doing and we'll have you come in again at some point down the road."

someone tell me HOW a Neuro can ASSURE someone that they'll catch one on a video EEG?

so that, and her note on the appt prior stating how she felt the improvement i was incurring from the smaller dosage of topiramate surely must be placebo... i've stopped seeing a neuro, for the time being

 once i get insurance and money... i'm going to a private neuro not affiliated with the same ACC teaching hospital I've been forced to go to since 2008

 

 

 

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