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Keppra Has problems too, Whew!

Wed, 01/14/2009 - 05:30

Whew!!  My concern over the minority of people who were insulted and/or put down when they got advice
to stop wallowing in self-pity at a time when they needed the most support really rocked the boat!

I know epilepsy is a real challenge;  I know society discriminates against people with epilepsy; and
I know that world governments don't offer enough health care for their citizens.  I have first-hand
experience with those facts, as most everyone here has varying amounts and different dimensions too.

Everybody's epilepsy is certainly different, as is everybody's life;  the common bonds between
everybody here is supposedly epilepsy and how everybody can share their knowledges and experiences
with epilepsy, for the better or for the worse, which is difficult or impossible to predict.

This internet site has great technical information and references, and it is a great site to start
research about epilepsy from;  the professional part is very reliable, and the public feedback part
gives great leads that may or may not be validated in the technical literature here and elsewhere,
and at times leads to very unique resources that wouldn't have been found otherwise.

The commonality of epilepsy's signs and symptoms offers very great support and relief amongst people
here, but, as everywhere else in the world, when a sign of symptom is a bit too unusual it becomes a
stigma amongst the very people here;  illustrating such a problem here leads to a prompt rebuke that
may be overcome and the stigma temporarily corrected with effort and then ignored if a minimal number
of people are involved.

In defense of all the anonymous people that were never or rarely explicitly identified in phrases like
"I'm not one of THOSE whinners," "THEY should discard THEIR professional victim hood, "THEY should just
accept the change and responsibility," "THOSE 'poor me' people better wake up," "I don't wallow in
self-pity like SOME PEOPLE," "why don't THEY accept common sense" etc., I politely tried to encourage
such phrases to be discarded to no avail.  When I made stronger requests I got a few insults, and
when I re-expressed a short version of my life story as a victim of epilepsy and societie's prejudice
against it, and how they shouldn't hold that against people here, the people literally attacked me
in words of violence and remarks of all kinds and "rules" of proper suffrage for epileptics came
raining down everywhere.  When I illustrated that such conduct could prove fatal to a "victim" seeking
help here, the post literally disappeared, and people running to see "the fire" were wondering where
they can find it.  The posts and visits to the particular blogs increased in great number, and sub-blogs
of the sub-blogs popped up.  While the post is still stuck in some blogs, with the bloggers really
complaining about it, I wonder if its going to disappear everywhere and why?

Is it because it illustrates a possible danger inherent in this site to people in dire health?  Is because it
illustrate the abuse epileptic children can receive?  Because it mentions sex and epilepsy? 
Because it cites briefly the destitute life on the street young epiletics may suffer?  The problems
with health care? Or because it criticizes the conduct of a few anonymous people on this site?

Comments

Re: Keppra Has problems too, Whew!

Submitted by zealot on Wed, 2010-10-20 - 17:45

Yeah, it's really pretty bad. 

I've had epilepsy since childhood and my mother hid it from everyone including the neurologists who examined me when they thought I might have myaesthenia gravis.  Can you imagine?  She did not tell the neurologists!

That really makes it worse because the seizures cause brain damage that makes you have more seizures.  Gabapentin helped a little, but I could not tolerate the side effects. I take 500mg Teva generic Keppra Q6 hours on the dot.  It helps, the side effects are lousy, I still have sleep TCs and other weird stuff, but it's better than Status Epilepticus, which is my only other choice.

It is possible to have a good life, you just have to work really hard to make it happen.  Don't let the shrinks turn your medical condition into a psychiatric disorder.  That will be your undoing.

My life is terrible right now according to most American's standards, but I'm OK.  I have a (leaky) roof over my head and some food in the fridge.  I'll need shoes and a winter coat, but I'll cross that bridge when I come to it.

I do not feel sorry for myself although I am angry and hurt by the abuse I have suffered.  I try to keep this in mind:  Living well is the best revenge.

Baruch Hashem.  Hoshia na.

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

Yeah, it's really pretty bad. 

I've had epilepsy since childhood and my mother hid it from everyone including the neurologists who examined me when they thought I might have myaesthenia gravis.  Can you imagine?  She did not tell the neurologists!

That really makes it worse because the seizures cause brain damage that makes you have more seizures.  Gabapentin helped a little, but I could not tolerate the side effects. I take 500mg Teva generic Keppra Q6 hours on the dot.  It helps, the side effects are lousy, I still have sleep TCs and other weird stuff, but it's better than Status Epilepticus, which is my only other choice.

It is possible to have a good life, you just have to work really hard to make it happen.  Don't let the shrinks turn your medical condition into a psychiatric disorder.  That will be your undoing.

My life is terrible right now according to most American's standards, but I'm OK.  I have a (leaky) roof over my head and some food in the fridge.  I'll need shoes and a winter coat, but I'll cross that bridge when I come to it.

I do not feel sorry for myself although I am angry and hurt by the abuse I have suffered.  I try to keep this in mind:  Living well is the best revenge.

Baruch Hashem.  Hoshia na.

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

Re: Keppra Has problems too, Whew!

Submitted by zealot on Wed, 2010-10-20 - 17:48

My new post:  Epilepsy Carpe Diem:  A View From Inside the Mind of the Jewish Zealot Lunatic Leper and the ILAE

<http://psychout.typepad.com/blog/2010/10/www_ilae_epilepsy_org_www_epilepsy_com_www_ncbi_nim_nih_gov_pubmed_www_omh_ny_state_us_www_nj_humanservices_dmhs_jfsatlantic_.html>

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

My new post:  Epilepsy Carpe Diem:  A View From Inside the Mind of the Jewish Zealot Lunatic Leper and the ILAE

<http://psychout.typepad.com/blog/2010/10/www_ilae_epilepsy_org_www_epilepsy_com_www_ncbi_nim_nih_gov_pubmed_www_omh_ny_state_us_www_nj_humanservices_dmhs_jfsatlantic_.html>

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

Re: Keppra Has problems too, Whew!

Submitted by 3Hours2Live on Thu, 2010-10-21 - 00:39
Hi Everyone, I see that "American Unorthodox" Pavlovian Neurological science is again under adverse logistical propaganda protocol placement. (i.e., Pavlov was Russian, so his neurological science with epilepsy must be un-American, and therefore "bad science" (If you don't believe me, just read the history sections in some of the massive reference books on the use and interpretations of the EEG)). B.F. Skinner had much the same banishment from the neurological sciences. Skinner had the gall to write a book with the title "Beyond Freedom & Dignity", and since he coined the phrase "operant conditioning" involving behaviour modification in 1937, and published it in 1938, it is indeed bizzare that applications of operant conditioning in the neurological sciences of epilepsies are in many books, and are termed "operant conditioning", but few of the books cite, or mention, B.F. Skinner. http://books.google.com/books?id=13cZqRS0ggwC&pg=PA43&dq=1938+B.+F.+Skinner&hl=en&ei=2LG_TMrHEon6sAPr0MD-BA&sa=X&oi=book_result&ct=result&resnum=4&ved=0CDYQ6AEwAw#v=onepage&q=1938%20B.%20F.%20Skinner&f=false http://books.google.com/books?id=Y5qnRGBNjVUC&pg=PA54&dq=operant+conditioning+epilepsy&hl=en&ei=mre_TPGVDJO-sQPe76T_BA&sa=X&oi=book_result&ct=result&resnum=4&sqi=2&ved=0CDwQ6AEwAw#v=onepage&q=operant%20conditioning%20epilepsy&f=false With books-dot-google, an "operant conditioning epilepsy" search gives about 3,140 results, while an "operant conditioning epilepsy B. F. Skinner" search gives about 85 results. Talk about being written out of the History of neurology!!! Then, with "operant conditioning", it is unduly limited to neuro-feedback in neurology, or corrupted with incorrect definitions and usages of "positive reinforcement", "negative reinforcement", "punishment", etc. Also, "positive reinforcement" is limited to "reward", while "reward" is most frequently tied to "money" or absence of "punishment". I've found that my "seizure threshold" is positively modified by being, and expressing/reading my neurological interests, and that is one major advantage of this website, that isn't so far failing a cusp to unusual neurological impairments, such as many of the epilepsies per Epilepsia, 46(4):470-472,2005. "Keppra: A Magic Bullet" at: http://my.epilepsy.com/discussion/979347 weights my view on regular Keppra, and my week long gap in taking the "residual dose" of Keppra did influence my following week's cluster of seizures. Tadzio

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