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For those who have or know about pseudoseizures

Fri, 11/05/2010 - 19:00
I have had physiological (ie. not psychogenic) seizures for 6 months, but a 12-year old neighbor of mine who, ah, sees me as role-model (don't ask me why - lol) has suddenly developed psychogenic seizures. It's so obvious it's really sad, and a pediatric neurologist said as much as well. I haven't had any in front of her, however it doesn't take much to see what seizures look like on the internet these days. Under the guidance of the neurologist, her parents and I are working with her on this, and right now the parents are using the "well anyone who has seizures can't do that" approach (play video games, stay up late, swim, eat junk food, you name it). Their next approach is to give her an "AED" (placebo). Anyway, her situation with pseudoseizures has led to questions I have that I would like the folks here who also have pseudoseizures (or know about them) to answer: 1. Do pseudoseizures have a stereotypical pattern of aura, seizure activity, seizure after-effects, etc.? Or, are the seizure-related behaviours for a given seizure type more variable than for physiological seizures? 2. Do pseudoseizures even have aura, and seizure after effects like headache, electrical sensations, etc.? 3. Are AEDs helpful for pseudoseizures? Can one "convince" themselves (consciously or subconsciously) that a particular AED is working, and therefore the seizures seem to come under at least partial control? Or, is the psychological reason for having the seizures too strong for any AED to work? 4. Since very often EEGs, MRIs, etc. can be normal even in those with physiological seizures, how does a neurologist determine that someone is in fact having pseudoseizures (assuming no obvious issues like pre-diagnosed mental disorder, mental or physical trauma, severe stress, etc,)? Thank you in advance for your help!

Comments

Re: For those who have or know about pseudoseizures

Submitted by zealot on Sat, 2010-11-06 - 00:39

MJ,

How do you know they are pseudo seizures?  Also, that is not the correct term.  That turn of phrase dates from the 1890s and was translated from the French writings of Pierre Janet.  (I think it's Pierre.)  PNES or Psycogenic Non Epileptic Seizures is not the preferred term or in Scotland PNEAD substitute Attack Disorder for Seizures.

It's all bull.  A twelve year old is pubescent and could be developing catamenial epilepsy.  Why are you so arrogant to think that it has anything to do with you?  You may be a role model, but if she's never seen you have a seizure, why would it be part of her universe?

Why is it so obvious?  How do you know what her pediatrician said?  You shouldn't; she's not your child.  Your condescending attitude is not terribly sympathetic.

That poor girl is going to have enough problems without you adding to them.  Her health is her families business and if you have nothing positive to offer, then stay out of it.

I've been accused of faking more seizures than I could count by I also lost count of how many times I woke up on the floor so long ago I forget how old I was.  Maybe even before I hit 13.  Certainly by 15.  And that's not counting all of the seizures I never knew I had.

It was terrible and I am extremely ill because of all of the "good" people who refused to admit or diagnose serious neurological issues.  Please do not do the same thing to another child.

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

MJ,

How do you know they are pseudo seizures?  Also, that is not the correct term.  That turn of phrase dates from the 1890s and was translated from the French writings of Pierre Janet.  (I think it's Pierre.)  PNES or Psycogenic Non Epileptic Seizures is not the preferred term or in Scotland PNEAD substitute Attack Disorder for Seizures.

It's all bull.  A twelve year old is pubescent and could be developing catamenial epilepsy.  Why are you so arrogant to think that it has anything to do with you?  You may be a role model, but if she's never seen you have a seizure, why would it be part of her universe?

Why is it so obvious?  How do you know what her pediatrician said?  You shouldn't; she's not your child.  Your condescending attitude is not terribly sympathetic.

That poor girl is going to have enough problems without you adding to them.  Her health is her families business and if you have nothing positive to offer, then stay out of it.

I've been accused of faking more seizures than I could count by I also lost count of how many times I woke up on the floor so long ago I forget how old I was.  Maybe even before I hit 13.  Certainly by 15.  And that's not counting all of the seizures I never knew I had.

It was terrible and I am extremely ill because of all of the "good" people who refused to admit or diagnose serious neurological issues.  Please do not do the same thing to another child.

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

Re: For those who have or know about pseudoseizures

Submitted by Masterjen on Sat, 2010-11-06 - 02:47
DZS: I'm not even going to dignify your response to the first part of my post with retorts to your various comments. Your arrogance in making comments and assumptions about a situation for which you do not know the whole story is shocking to me. If you had read my full post, I'm sure you would agree that it would have been more beneficial not only to me but to other readers if you had applied your apparent knowledge about PNES into answering my questions.

Re: For those who have or know about pseudoseizures

Submitted by zealot on Sat, 2010-11-06 - 10:08

If all you wanted was information, you should have simply asked for information.

Your disdain for the child and her "condition" is obvious.  You have "real" epilepsy and she doesn't.  The whole post oozes with that.

Leave the child alone.  She has parents.  Let them deal with her health problems.  With friends like you she doesn't need enemies.

I know lots about PNES, but I don't think that's what you want.  Like I said, if knowlege is what you wanted you would have asked for it instead of disrespecting a twelve year old child.

You should be ashamed of yourself.

Baruch Hashem.  Hoshia na.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help! Please read my blog. The link is after my name. Thanks.

If all you wanted was information, you should have simply asked for information.

Your disdain for the child and her "condition" is obvious.  You have "real" epilepsy and she doesn't.  The whole post oozes with that.

Leave the child alone.  She has parents.  Let them deal with her health problems.  With friends like you she doesn't need enemies.

I know lots about PNES, but I don't think that's what you want.  Like I said, if knowlege is what you wanted you would have asked for it instead of disrespecting a twelve year old child.

You should be ashamed of yourself.

Baruch Hashem.  Hoshia na.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help! Please read my blog. The link is after my name. Thanks.

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