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Saturday, 14 May 2011

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Devorah Zealot Soodak

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Devorah Zealot Soodak

Tadzio

Hi Zealot,

I think I posted this on epilepsy-dot-com too, but with spam traps cuttng off the links.

I haven't been feeling very well either. I haven't been in physical contact with anybody else for a little more than two weeks, so if I got a virus, it must have came in on the wind or from a voracious mosquito. The bugs loved the low 90's, but they all decided to come in with me when the temp dropped back into the low 40's. The pollen has been extra bad this year, and even with air purifiers, every time the central heat comes on, it's been difficult to breathe and survive here too. Now, I feel like I'm going to have a hard time keeping my Keppra down long enough for it to work its magic.

"Cognitive Dissonance" popped-up on another forum again, and I can't remember if I posted the link to the paper from the thorn of the "Fatal Flaw" article ( http://www.nytimes.com/2008/04/08/science/08tier.html ), more completed at: http://www.som.yale.edu/faculty/keith.chen/papers/Final_JPSP10.pdf

There are certainly many such possible mis-weighted "mistakes" in the diagnostic decision tree somewhat promoted by Benbadis, as the numbers don't add up.

My wondering about the (IMO) fad of PNES is also fanned by the numbers with LQTS (the search results here for PNES is about 2,030, while only about 5 for LQTS, (about 400 to 1). Then, the frequency in the general population of PNES to LQTS confounded with epilepsy is maybe as low as 1 to 20 (for each person labeled with PNES, there are 20 people with LQTS, but labeled with epilepsy instead of/with LQTS). So the search reference frequency is a tremendous 8,000-fold error of paths, if independent.

I responded to a poll including "stress triggers", and I expressed my concern with the Benbadis numbers and phraseologies again:

I wonder about the common usage of the phrase "seizure triggers" for non-specific things that might lower seizure thresholds for some individuals, versus the more technical (and restrictive) usage of the phrase "precipitating stimulus" for specific things that more directly, and quickly, induce seizures in the Reflex Epilepsies, and often used synonymously for the phrase "seizure trigger". Panayiotopoulos' book "The Epilepsies" (2005) cites the ILAE differentiation between non-specific and specific precipitating factors, and in at least the USA available at: http://www.ncbi.nlm.nih.gov/books/NBK2596/
Tables 13.1 and 13.2 list more of the classification scheme, and the wide range of precipitating stimuli.

Some reports cite that a very large percentage of people only have, or have their majority of, seizures during sleep, without any identifiable precipitating factors (certainly not stress or lack of sleep). Under common assumptions, I have been both told that epilepsy is so rare as to be not worth considering as causing aura phenomena, and then once the epilepsy is established as present, to my being prejudicially told that I must have regular sleep and that I must avoid all stress, including all rewards. When my clusters of seizures start as I go to sleep, I can prevent them as long as possible by simply staying awake, which stress helps to lengthen the period of prevention. Otherwise, stress has no effect on my seizures (confounding effects of seizures with "stress" renders the word "stress" more vague and useless). My concern over the overly broad usage of the concept of "stress" is partly based on the contention: "The most helpful historical features are the following", including, "Specific triggers that are unusual for epilepsy (e.g., stress, getting upset, pain, certain movements, sounds), especially if they are alleged to consistently trigger a seizure." From "The differential diagnosis of epilepsy: A critical review" by S. Benbadis (Epilepsy & Behavior 15 (2009) 15–21),
http://www.epilepsyfoundation.org/epilepsyusa/yebeh/upload/Differential_diagnosis_of_epilepsy.pdf

By the "Imitators of Epilepsy", technically, the poll more aptly reflects that of what is professionally held as "What Triggers Your Non-Epileptic Seizures", with the second largest result being further catergorized as Psychogenic Non-Epileptic Seizures/Attacks (PNES/PNEAs) triggered by stress.

IMO, the neurologists' fad of labeling more cases of true epilepsy as just PNES is growing at an alarming rate, and while it saves money in the short term (and is a convenient "unwanted patient" dump), the long term expenses outweigh the immediate savings. A simple frequency count of citations for "PNES" versus one for "Long QT Syndrome (LQTS)" illustrates the danger of the PNES fad, as PNES has a general population rate listed as 2 to 33 per 100,000, while "LQTS affects approximately 1 in 2,500 persons and patients with LQTS are often diagnosed with a seizure disorder, being fainters, or having “spells.” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677528/

Is a plausible explanation just the status of a non-specific precipitating stimulus by thresholds magically being confabulated as a specific precipitating stiimulus in the epilepsy versus PNES diagnostic decision tree? It still is most strange that the second most frequent response polled seizure trigger of "stress" is "unusual for epilepsy".

I haven't received any further response to my citing the TLE conflict of "common sense" versus MMPI "healthy" results on a TFT forum, but the textbook expert's viewpoint is somewhat humorous for a "damned if you do, and damned if you don't" in legal-land with social work under the "Dr. Donald Dork": http://books.google.com/books?id=rwpHAAAAMAAJ&dq=editions%3AeAdbEn-yZbcC&q=Dr.+Donald+Dork#search_anchor
(the link to amazon-dot-com book with the "search" feature for "MMPI" gives page 200 for one "paranoia paradox" (which includes overlap with TLE), while Dork's on depression validity. The MMPI ghosts are very touchy over copyright permissions on the internet with their voodoo works).

Lots of Love,

Tadzio

Devorah Zealot Soodak

Tadzio,

I'm sorry you aren't feeling well. I don't know if this season is unusually bad, Philadelphia is bad, or I'm unusually sensitive. I am miserable, wheezing, short of breath, coughing, hives, you name it. The antihistamines make me stupid and forgetful (Diphenhydramine is an anticholinergic) and the albuterol lowers my seizure threshold (or not according the the Jefferson psycho neurologists).

It's about time someone poked holes in some of this stuff. It seems that everyone involved is self-serving and still insists that their work is valid even when evidence to the contrary is clear. The stuff with PNES is especially egregious because these guys use their own increased diagnosis of PNES as "proof" of it's validity.

I am disposed to elongated Qt. It has almost killed me. The albuterol makes me hypokalemic and then I start getting muscle cramps and cardiac arrhythmias. I also know that I get seizures from the albuterol. I also get seizures from eating. I also get seizures as I am falling asleep and, just as you say, the only way to stave them off is to keep myself awake, a strategy that is counterproductive in the long run.

Dr. Donald Dork. What a hoot. Is he a cousin of the Duck? Is he a dork?

This headline quacks me up:
Disney, US woman settle federal suit over alleged groping by employee in Donald Duck costume

I just get so upset at this point when I read this stuff. I know I have seizures. I know I've had abnormal EEGs. I know I've had Torsades des Pointes. Does his mean I have epilepsy? I don't know. Maybe if I could keep my electrolyte levels stable it wouldn't matter because then my brain and heart would be functioning optimally.

I think it all boils down to this: Most people are idiots. When we solve that problem, we will have cured all of the world's ills.

Oh well.

Baruch Hashem. Hoshia na.

Lots of Love,

Devorah Zealot Soodak www.psychout.typepad.com/ the zealot needs help!

P.S. Please click here to read my latest post Mental Health: The Epileptic Lunatic Zealot Says: Google This!

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