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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 3Hours2Live on Thu, 2010-10-21 - 00:48
I tried to add the word "interested" that was left out, but the SPAM filter won't let me, so here's the whole corrected paragraph: I've found that my "seizure threshold" is positively modified by being interested, 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. Tadzio

Re: Keppra Has problems too, Whew!

Submitted by zealot on Thu, 2010-10-21 - 08:18

Tadzio,

I'm with you there.  Staying busy and interested protects me from seizures.  If I get disinterested, I get absence seizures and the kindling process starts again.

The VEEG evidence of my absence seizures was completely ignored.  I know they happened because one of the few nurses who actually carefully monitored the video came to check up on me.

This raises another problem with VEEGs.  They don't have someone full time monitoring the videos.  The same nurses have to be on the floor!  How can they monitor the video and be on the floor taking care of patients at the same time?

The idiot neuros obviously never watched the video, nor did anyone ever come to physically examine me during or after an "event."  So much for an expensive waste of time and money.

My head hurts so much I can't think.  The toilet is overflowing and the chlorine bleach gives me seizures.  (Chlorine is a potent neuro-toxin and induces seizures and can kill by causing status epilepticus.  Phosgene gas, the active ingredient of which is chlorine, was used as nerve gas in World War I.)

Does anyone remember PhysoHex?  I used to scream and cry about being forced to use it as a child, but the pediatrician insisted.  Then, it was taken off the market!  Why?  Because it is poison.  It is a carbon ring studded with six chlorines.  It was especially harmful for children and a generation were forced to use it and seize!

The more things change...(I would have written it in French, but my windows are stuck in Engish and I can't get the cedille.

Baruch Hashem.  Hoshia na.

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

Tadzio,

I'm with you there.  Staying busy and interested protects me from seizures.  If I get disinterested, I get absence seizures and the kindling process starts again.

The VEEG evidence of my absence seizures was completely ignored.  I know they happened because one of the few nurses who actually carefully monitored the video came to check up on me.

This raises another problem with VEEGs.  They don't have someone full time monitoring the videos.  The same nurses have to be on the floor!  How can they monitor the video and be on the floor taking care of patients at the same time?

The idiot neuros obviously never watched the video, nor did anyone ever come to physically examine me during or after an "event."  So much for an expensive waste of time and money.

My head hurts so much I can't think.  The toilet is overflowing and the chlorine bleach gives me seizures.  (Chlorine is a potent neuro-toxin and induces seizures and can kill by causing status epilepticus.  Phosgene gas, the active ingredient of which is chlorine, was used as nerve gas in World War I.)

Does anyone remember PhysoHex?  I used to scream and cry about being forced to use it as a child, but the pediatrician insisted.  Then, it was taken off the market!  Why?  Because it is poison.  It is a carbon ring studded with six chlorines.  It was especially harmful for children and a generation were forced to use it and seize!

The more things change...(I would have written it in French, but my windows are stuck in Engish and I can't get the cedille.

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 Thu, 2010-10-21 - 08:49

Tadzio,

It's worse than I thought.  It's not just the Drs.:  Tthe scientists don't know who Sir Francis Bacon is anymore.

Scientific method has been replaced with political (and impolite, I might add) correctness.  Bash the guys beliefs, discredit his science.  Huh.  These people fail epistomology 101 and high school biology!  Yeesh!

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

Tadzio,

It's worse than I thought.  It's not just the Drs.:  Tthe scientists don't know who Sir Francis Bacon is anymore.

Scientific method has been replaced with political (and impolite, I might add) correctness.  Bash the guys beliefs, discredit his science.  Huh.  These people fail epistomology 101 and high school biology!  Yeesh!

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

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