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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 seizethemoments on Sun, 2010-11-07 - 01:30
I started typing my post before I read this.  Glad to see that (hopefully) anything else can be ruled out!  I don't understand consciously feigning seizures...especially for a 12 year old.  I hope things get worked out with the psychologist.  Encourage everyone to be supportive!

Re: For those who have or know about pseudoseizures

Submitted by zealot on Sun, 2010-11-07 - 07:01

MJ,

I appreciate the story.  Now I know that you are truly a friend to the child.

The problem is the Drs.  Just because a Dr. has a good reputation, doesn't mean that they practice good medicine.  Nothing is terribly obvious in this situation, except for the fact that the Drs. are not going to admit they made a mistake in their diagnosis.

If their diagnosis were correct, the aversive conditioning would most likely have been successful.  It has not.  The poor child is still having seizures.  My guess is that they are not feigned seizures.

Psychogenic seizures are not feigned seizures and no one says they are.  Psychogenic seizures are associated with Trauma.  Pierre Janet coined the term that was translated from the French as "pseudoseizures" in the 1890s.  I would have hoped we'd come a long way since then, but we haven't. 

"Feigned" seizures would be classified as Malingering in the DSM-IV-tr or, at the very least a Facticious Disorder.  Malingering means feigning an illness for secondary gain such as avoidance of punishment or gaining of attention.  A Facticious Disorder is pretty much the same thing with more emphasis on the latter than the former.  So the Drs. haven't even gotten the diagnosis right.

Since you do care for the child, I suggest that you direct your efforts to researching good neurologists so that the child can be re-evaluated.  The literature on PNES is not worth reading.  It is a confused, self-contradictory mess.  Tadzio indicated as much if you can understand his metaphors.

My story of misdiagnosis should be a cautionary tale.  Please do not let this little girl suffer the same fate that I have.  Her life depends on it.

I am truly sorry that I offended you.

Baruch Hashem.  Hoshia na.

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

P.S. A nice blog post from the zeelot

MJ,

I appreciate the story.  Now I know that you are truly a friend to the child.

The problem is the Drs.  Just because a Dr. has a good reputation, doesn't mean that they practice good medicine.  Nothing is terribly obvious in this situation, except for the fact that the Drs. are not going to admit they made a mistake in their diagnosis.

If their diagnosis were correct, the aversive conditioning would most likely have been successful.  It has not.  The poor child is still having seizures.  My guess is that they are not feigned seizures.

Psychogenic seizures are not feigned seizures and no one says they are.  Psychogenic seizures are associated with Trauma.  Pierre Janet coined the term that was translated from the French as "pseudoseizures" in the 1890s.  I would have hoped we'd come a long way since then, but we haven't. 

"Feigned" seizures would be classified as Malingering in the DSM-IV-tr or, at the very least a Facticious Disorder.  Malingering means feigning an illness for secondary gain such as avoidance of punishment or gaining of attention.  A Facticious Disorder is pretty much the same thing with more emphasis on the latter than the former.  So the Drs. haven't even gotten the diagnosis right.

Since you do care for the child, I suggest that you direct your efforts to researching good neurologists so that the child can be re-evaluated.  The literature on PNES is not worth reading.  It is a confused, self-contradictory mess.  Tadzio indicated as much if you can understand his metaphors.

My story of misdiagnosis should be a cautionary tale.  Please do not let this little girl suffer the same fate that I have.  Her life depends on it.

I am truly sorry that I offended you.

Baruch Hashem.  Hoshia na.

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

P.S. A nice blog post from the zeelot

Re: For those who have or know about pseudoseizures

Submitted by seizethemoments on Sun, 2010-11-07 - 01:27

One of my very close friends has psychogenic non-epileptic seizures.  I have witnessed her events in which she can feel it coming on, drops, cannot get up but is otherwise conscious (able to talk, etc).  I guess similar to the epileptic atonic seizures. 

They suspect the PNES diagnosis is likely because of events that occur during the EEG did not have produce abnormal brain waves.  Anti-anxiety or anti-depressants help her more than AED's did...but good therapy would be an alternative too.

When I was younger I used to be tempted to look down on her situation because her events began right after mine, and I didn't understand.  I was ashamed to have seizures but she talked about it openly.  I see now that she has a variety of stressors and still needs support.  It is good for her to receive medical care on a regular basis from an understanding doctor.

I didn't know about PNES, but having a friend with it helps me see the importance of understanding that these events are very real to the person experiencing...regardless of the derivation of the problem.  As for your neighbor, the best advice I can offer is just be there and be supportive.  You must be a very supportive person already if she sees you as a role model :)

I hope she had a VEEG or AEEG, and everything else can be ruled out.  Judgement that is made hastily can have severe consequences.

One of my very close friends has psychogenic non-epileptic seizures.  I have witnessed her events in which she can feel it coming on, drops, cannot get up but is otherwise conscious (able to talk, etc).  I guess similar to the epileptic atonic seizures. 

They suspect the PNES diagnosis is likely because of events that occur during the EEG did not have produce abnormal brain waves.  Anti-anxiety or anti-depressants help her more than AED's did...but good therapy would be an alternative too.

When I was younger I used to be tempted to look down on her situation because her events began right after mine, and I didn't understand.  I was ashamed to have seizures but she talked about it openly.  I see now that she has a variety of stressors and still needs support.  It is good for her to receive medical care on a regular basis from an understanding doctor.

I didn't know about PNES, but having a friend with it helps me see the importance of understanding that these events are very real to the person experiencing...regardless of the derivation of the problem.  As for your neighbor, the best advice I can offer is just be there and be supportive.  You must be a very supportive person already if she sees you as a role model :)

I hope she had a VEEG or AEEG, and everything else can be ruled out.  Judgement that is made hastily can have severe consequences.

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