For those who have or know about pseudoseizures

CDC funded page

Not a CDC funded Page

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 thebettles on Sat, 2010-11-06 - 21:28

Hi again Deborah,

I appreciate you bringing my attention again to the exact phrasing MJ used to attempt to describe the situation. I imagine you would describe this situation very differently if it were happening to you; a young adult who you are very close to starts showing signs of possibly having seizures or PNES. Possibly it is the wording of the post that is getting in the way here, and possibly MJ cares very deeply for this child, regardless of describing the situation and using language which to you sounds as though the exact opposite were true.

Are you leaving any room here for any of these possibilities or have you already come to the conclusion that this young child is in for a life of pain and misery and misunderstanding, a life of struggle and hardship.

Do you have the patience to let the mud settle?

You are incredibly insightful, Deborah, and might be tremendously helpful in this situation. This requires not being personally offended by MJ. Can you get there? Can you be helpful even though you see so much ignorance and disdain in this supposed "role model"?

Can you be helpful specifically because of the lapses in qualities you feel MJ should have?

You seem to have an affinity for young adults, telling them to read your blog, if they can "handle it"...

What might be some helpful suggestions for ensuring this young adult gets the care she needs?

much love to all,

marty

Hi again Deborah,

I appreciate you bringing my attention again to the exact phrasing MJ used to attempt to describe the situation. I imagine you would describe this situation very differently if it were happening to you; a young adult who you are very close to starts showing signs of possibly having seizures or PNES. Possibly it is the wording of the post that is getting in the way here, and possibly MJ cares very deeply for this child, regardless of describing the situation and using language which to you sounds as though the exact opposite were true.

Are you leaving any room here for any of these possibilities or have you already come to the conclusion that this young child is in for a life of pain and misery and misunderstanding, a life of struggle and hardship.

Do you have the patience to let the mud settle?

You are incredibly insightful, Deborah, and might be tremendously helpful in this situation. This requires not being personally offended by MJ. Can you get there? Can you be helpful even though you see so much ignorance and disdain in this supposed "role model"?

Can you be helpful specifically because of the lapses in qualities you feel MJ should have?

You seem to have an affinity for young adults, telling them to read your blog, if they can "handle it"...

What might be some helpful suggestions for ensuring this young adult gets the care she needs?

much love to all,

marty

Re: For those who have or know about pseudoseizures

Submitted by zealot on Sat, 2010-11-06 - 22:39

Marty,

I am having difficulty with her language. That is a huge problem. She does have epilepsy and I know from personal exerience that linquistic skills are one of the casualties. Still, she makes emphatic statements as if speaking from expertise and then expresses ignorance. It is troubling.

I don't believe in "shoulds." I believe MJ may be very frightened for the child and it may be possible that she feels so bad about her own epilepsy that she desperately hopes that the same fate is not in store for the child. Unfortunately, the PNES hokum is a worse fate than epilepsy.

The child is being punished for being sick. She is told that she can't watch TV. Eat "junk." Play video games. All the good kid stuff. She's still having seizures even though she's being punished for them. So now they want to give her sugar pills. Huh.

It is possible that the child has a medical condition other than epilepsy that is causing her seizures. I've said this before: "not epilepsy" is vast, uncharted territory. The seizures are real. The cause is unknown. PNES is a label for "I'm too stupid, cheap, or lazy to figure it out so I'll blame the patient." The Drs. rallying cry.

I said this before too: a couple of generations ago Drs. were telling patients with diabetes to go home because it was "all in their heads." Well, guess what. Epilepsy is. That's where our brains are.

The best advice I can give is to tell the parents to take their daughter to a different neurologist. The kid's not faking if punishment didn't make her "pseudo seizures" go away. And faking, by the way is not "PNES."

There is absolutely no evidence that aversive conditioning could be effective in treating PNES as it is associated with PTSD and trauma because of the work done in the 1890s by Pierre Janet. In fact, punishing an already traumatised person for their trauma symptoms only causes more trauma and exacerbation of symptoms. One would have hoped that we'd come a long way since then, but apparently, not.

Baruch Hashem. Hoshia na.

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

Marty, I am having difficulty with her language.  That is a huge problem.  She does have epilepsy and I know from personal exerience that linquistic skills are one of the casualties.  Still, she makes emphatic statements as if speaking from expertise and then expresses ignorance.  It is troubling. I don't believe in "shoulds."  I believe MJ may be very frightened for the child and it may be possible that she feels so bad about her own epilepsy that she desperately hopes that the same fate is not in store for the child.  Unfortunately, the PNES hokum is a worse fate than epilepsy.  The child is being punished for being sick.  She is told that she can't watch TV.  Eat "junk."  Play video games.  All the good kid stuff.  She's still having seizures even though she's being punished for them.  So now they want to give her sugar pills.  Huh. It is possible that the child has a medical condition other than epilepsy that is causing her seizures.  I've said this before:  "not epilepsy" is vast, uncharted territory.  The seizures are real.  The cause is unknown.  PNES is a label for "I'm too stupid, cheap, or lazy to figure it out so I'll blame the patient."  The Drs. rallying cry.  I said this before too:  a couple of generations ago Drs. were telling patients with diabetes to go home because it was "all in their heads."  Well, guess what.  Epilepsy is.  That's where our brains are. The best advice I can give is to tell the parents to take their daughter to a different neurologist.  The kid's not faking if punishment didn't make her "pseudo seizures" go away.  And faking, by the way is not "PNES."  There is absolutely no evidence that aversive conditioning could be effective in treating PNES as it is associated with PTSD and trauma because of the work done in the 1890s by Pierre Janet.  In fact, punishing an already traumatised person for their trauma symptoms only causes more trauma and exacerbation of symptoms.  One would have hoped that we'd come a long way since then, but apparently, not. Baruch Hashem.  Hoshia na. Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help! Please read my <a href="http://psychout.typepad.com/">blog</a>. Thanks.