ADVERTISEMENT
Masterjen

For those who have or know about pseudoseizures

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

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

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

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.

Re: For those who have or know about pseudoseizures

Hello Deborah,

Your responses seem a bit uneven.  Do you really believe this post has anything to do with "my" epilepsy vs. "yours"? Is that why this post was made, so that MJ could feel better about herself and tell the world about this neighbor of hers who doesn't have "real" epilepsy like she does? In her post in fact, she is asking for answers to many many important questions in order to get to to the very root essence of what is going on with her neighbor.

I think what stirred your pot was MJ writing that her feeling it is PNES was "obvious and really sad". She may be correct or she may be way off and therefore it sure would be useful to honestly answer all her questions and help guide her and her neighbor correctly, since you have lots of knowledge on PNES.

I think what might be obvious is that that phrase struck a cord deep within you, resounding all the anger and hostility of a life of not accepting being not accepted.

But saying something like that would be to make flippant judgements about another without really having any idea who they are except reading between the lines of a response to a post...

Love to all,

Marty

Re: For those who have or know about pseudoseizures

Hi Marty,

Besides the ad infinitum of having to accept the acceptance of future and past acceptances in every direction and dimension and aspect (which stalls Acceptance and Commitment Therapy in a muddled dirty/clean muck of rejection when "facts" vaporize at sunrise), I'm tempted by the very root of all "essences" of knowledge of "things" that don't exist.

Some of these "things" that don't exist are like the essences of shadows. The notion of a "shadow" is usually a very useful simplification that exploits the "innocent" consequences of using the fictional construct of "the shadow", but while the usage becomes so commonplace that it becomes to be regarded as a "true belief" of a well established "fact", disaster lurks. When this "fact" of the "truth of the shadow's existence" is used to nail down the verification that the fastest speed possible is the speed of light, the "shadow" is liable to jump up, and take off at a speed much faster than the speed of light. The "shadow" has this great ability because it doesn't have to deal with the reality of being in existence (i.e., shadows don't exist).

The sets of the true-believers in organic disorders and the true-believers in non-organic disorders, have many members that belong to both sets, and many members jump from one to the other whenever the need arises. Some members of these two sets even write books about "The Shadow Syndromes" from the other set, and some will even try to catch their own member-set's shadow syndromes.

All organic disorders cast "shadows". All non-organic disorders are of the "shadows". True-believers of these "shadows" strongly regard that their statistically categorized shadows are in existence as well established "facts", even to the extreme point that they believe that the "shadow" of their "shadows" can become "Shadow Syndromes".

As the true-believers jump from one set to the other set, they often stumble. One major stumble is "PNES". Trying to duck falling prey to the one aspect of the "shadows of the shadows", PNES is sometimes relabeled PNEAs. To avoid the problems of too much loaded-baggage of contradictory knowledge from the other set, some jumpers will claim non-knowledge of the knowledge they are claiming to be utilizing while they are in mid-air making the indecisive, but otherwise economical (for themselves), jump.

Will all the shadows go to a big convention, and stick their PNEAs into their DSM-V, so no light can enter their present DSM-IV hole???

Tadzio

Re: For those who have or know about pseudoseizures

Tadzio,

This is blogworthy.  Please go to the TypePad Dashboard and use the Reblog feature.  Click the control and enter the url of your comment to which I am replying, add a few words (or not), and publish.

I think you can reblog anything you feel like.  I think the TypePad lawyers have the copyright stuff worked out, but I haven't read all of the fine print yet.

I just did it or the first time today.  It autogenerates a nice little post with the link to the comment embedded and copies in the name and text of the forum and that tricolor logo thingie.

I'm gonna do some more of that.  The more often we publish, the higher the search rankings.  So post here, publish there and vicee voicie.

Baruch Hashem.  Hoshia na.

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

the new post from the zeelot

the new reblog from the zeelot

Re: For those who have or know about pseudoseizures

Hi Zealot,

It appears that fictional constructs are too accepted to maintain Popper's empirical falsification. I came across the gross abuse of the notion of "shadows" in the book "Shadow Syndromes" by Ratey and Johnson (1997). The book claims biology, but it is more than lost in Aristophanes' "The Clouds". They can't get either end to study anything real. The shadows of moving objects "displaying" the "Invisibility of the Lorentz Contraction" (James Terrell, Physical Review, Volume 116, Number 4, November 15, 1959, pages 1041-1045; http://www.guspepper.net/electro/Segundo%20semestre/Seminarios/Funez.pdf ), strangely violates something with the possible shadows. With all sets of laws of shadows being subjected to being violated, is there any valid and objective "science" involving shadows?

The "directional flow of heat" involving thermodynamics gives another sharp blow to the DSM's radiating "cold" to the shadows. Then the very basics are immediately trammpled, as critics have repeatedly cited to no avail: "First, you must appreciate that the notion of mental disorder is what social scientists call a construct. Constructs are abstract concepts of something that is not real in the physical sense that a spoon or motorcycle or cat can be seen and touched. ... Mental illness is a construct. ... The category itself is an invention, a creation. It may be a good and useful invention, or it may be a confusing one. DSM is a compendium of constructs. And like a large and popular mutual fund, DSM's holdings are constantly changing as the managers' estimates and beliefs about the value of those holdings change." From "Making Us Crazy", by Kutchins and Kirk (1997), pages 22-23.
http://books.google.com/books?id=qO1_eDb3viIC&printsec=frontcover&dq=mak...

Then, with "Shadow Magic", every single one of our "Quirks, Oddies May Be Illnesses"
http://www.nytimes.com/1997/02/04/science/quirks-oddities-may-be-illness...

So, Casper the Friendly Ghost does cast a more than real shadow, more real than himself! The construct forms a continuum (infinite number of points between any two points?), so they better finish-up after they count the possibilities (an infinite number of degrees of Mental Disorders for a finite population, so it's a good thing a few different pills will cure everything under the Sun for Casper). "But neuroscience does tell us that, when it comes to a life well-lived, we must take the existence of a soul on faith." Ibid. Rately, page 366. A welcome to Mary Baker Eddy to practice neurology, but, "Pure materialism, the assumption that we possess no free will at all - that our biology makes us do the things we do - is a working proposition only for those of us fortunate enough to be born with high serotonin levels and a long attention span" Ibid. So, if we understand epilepsy, we're lost, and if we don't, we're still lost, but then "free", if we have a $$$Billion$$$ to be "Free To Choose", and don't choose to waste it on a serotonin high of bad brights. If the light of science is too bright, it's as if everyone better stay in the shadows, and be mentally ill at least a little bit (level to be determined by self-sacrificing panel of experts who have seen the light, excluding Mary Baker Eddy (the "wrong" light, by oligarchical majority rule)).

There is a Moby Dick book on philosophy that takes a few dozen pages to "simply" explain the speed of shadows, but a more satirical one is "Shadows: Unlocking Their Secrets, from Plato to Our Time" By Roberto Casati, Abigail Asher (2004):
http://books.google.com/books?id=5h7PsLICpm0C&pg=PA46&dq=shadows+move+fa...

Epilepsy also helps explain why hot water freezes faster than cold water (I've read the big book on infinite similarities too).

Lots of Love,

Tadzio

P.S. Google Chrome today keeps declaring "Unresponsive Page" plug-ins for 2 to 3 minutes before it defaults and/or freezes on the home page of Psychout.

Re: For those who have or know about pseudoseizures

Tadzio,

I noticed that the home page is loading "funny."  Can you get me a screen pic or some accurate represnentation so I can send it to TypePad support?  That's a real problem.  Maybe it's related to the post with the ilea typo in the url name so the search only turns up the url name in the text of my posts here, but not in the site search for my domain.  Huh.

Let me know if it keeps happening.  I noticed it was really slow last night, but so was everything else.  I thought it was just my haunted equipment.  Caspar's been busy casting shadows.

I keep hammering these same points that other people have been hammering very eloquently for decades.  The $$$ people don't want to hear it because they cannot profit from logic, only illogic.

Our grandchildren will all be speaking Mandarin if this continues.

Btw, when hot water freezes faster than cold, at how many Gs is that?  Does that mean water vapor freezes faster than water?

Baruch Hashem.  Hoshia na.

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

Re: For those who have or know about pseudoseizures

Marty,

Please read this carefully:

"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)."

  1. The term "physiological seizures" is a new one on me.  Unless you are accusing someone of malingering or having a facticious disorder, even psychogenic seizures have a physiological basis.  There is no difference between psychogenic and physiological except in the eye of the beholder.
  2. "ah, sees me as role-model (don't ask me why - lol)" is a problem in and unto itself.  If she does not consider herself worthy of the role she should remove herself from it.  I believe she has as little respect for herself as she does for the girl.
  3. If she needs to ask what psychogenic seizures are, how does she know that "It's so obvious."
  4. Since the aversive conditioning is so obviously unsuccessful, what makes them think the '"AED" (placebo)' will be any more so?
  5. How did the pediatric neurologist determine that a twelve year old has psychogenic seizures?  Has the girl had a VEEG or AEEG?

You are right that my responses are "uneven."  I was much more upset when I wrote the post at the bottom.  I find a grown woman ridiculing a twelve year old child to be abhorrent.  When I calmed down, I clarified my position.

There is nothing flippant about what I said.  I am not judging her.  I am telling her to stop and butt out before she compounds the damage to the child.  The poor girl is in for a tough road with a neurologist and a "role-model" who so clearly do not have her best interests at heart.

She has one thing right.  It is sad.  Very, very, sad.  But not for the reasons she believes it is.

Baruch Hashem.  Hoshia na.

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

Re: For those who have or know about pseudoseizures

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

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.

Re: For those who have or know about pseudoseizures

Hi Masterjen,

The first things I thought of with 12-year olds and role-models, was the three overlapping groups of kids trying to limp like Chester on "Gunsmoke" in a one-TV-Station town, hair and heads saturated with Brylcreem, and desperately failed side-burns. Now, a few neurologists consider epilepsy to be another "fashionable disorder" to highly suggestible individuals.

Case studies of active and/or passive inadvertant imitation of epilepsy in children is often limited to that between siblings, with common behavioural assumptions:
"Being the other one: growing up with a brother or sister who has special needs" By Kate Strohm (2005), page 177.
http://books.google.com/books?id=f0UA61JcCRUC&pg=PA177&dq=siblings+imita...
"Epilepsy and the Family: A New Guide" By Richard Lechtenberg (2002), pages 212-214.
http://books.google.com/books?id=ZTBWrZlfv5wC&pg=PA212&dq=sibling+imitat...

Since epilepsy isn't contagious, with the caveat of environmental neurotoxins resulting in clusters beyond possible coincidence with non-related individuals, people can often learn about and "from" epilepsy (and not just the person with epilepsy, in that siblings are usually conditioned to imitate each other and other role-models), and amongst the aversive, Pavlovian, and operant conditioning from seizures, some conditioned behaviours may be viewed as becoming undesirable. In dealing with any undesirable conditioned behaviours about seizures of other individuals, many neuro-behavioural treatment models make the moderately to very grave mistake of confounding "punishment" with "negative reinforcement" and ignoring the adverse effects of withdrawal of "positive reinforcements" while using the frequency of rewards in schedules of conditioning as secondary punishment (they also waste opportunities by using abstract rewards, as the Limbic System is conditioned much faster with a Lolipop than a federal currency note (even for self-administered adults), and direct and/or accidental punishments create more problems than they solve).

One of my favorite concise books on operant conditioning is "A Primer On Operant Conditioning" by George Reynolds (1976), but one with more preview is, and covers much the same techniques, with warnings about "punishments" (but for different subject behaviours):
http://books.google.com/books?id=ba58Bh266Q8C&pg=PA76&dq=A+Primer+on+Ope...
(IMO the notion of "motivation" doesn't work well in behaviourism/psychology or neurology).

Books like "Gates and Rowan's Nonepileptic Seizures" by Steven C. Schachter, W. Curt LaFrance Jr. (2010), chapter 17, seem to easily go "over-board" IMO, as if, like they would recommend pretend surgery, to neuroleptic drugs, for children imitating Chester's limp.

Different books and articles on PNES give a widely varying range of opinions, but the ones I most remember are:

1. PNES seizures are much more varied;

2. PNES can be conditioned into many phases and sensations (PNES is just a set of learned behaviours, and as technology is increasing in examining micro-seizures, there may be no sharp dividing line between actual conditioning and micro-seizures being the results of learning);

3. AEDs do not help PNES anymore than a sugar-pill placebo, while some AEDs may result in genuine seizures (all AEDs not working is a general clue to suspect PNES);

4. A neurologist makes a weighted guess that PNES is present, as a hypothesized statistical "match" to a surmised construct doesn't make the construct "real" or valid and objective against any stricter standards. Pre-diagnosed mental disorder, trauma, severe stress, etc., can often just means careless experts mistaking symptoms for their cause, as psychological disorders always can only be implied, while with expensive great care and detail, organic disorders can be explicitly identified.

One of my favorite books on blunderously confusing organic disorders with psychological disorders is "Distinguishing Psychological From Organic Disorders" by Robert L. Taylor (2000):
http://books.google.com/books?id=nEPw3WvJlGAC&printsec=frontcover&dq=Rob...

Tadzio

Re: For those who have or know about pseudoseizures

Tadzio,

Good post.  I have to try to get my hands on that book.  It's a huge issue.  All of this money not being spent to properly diagnose patients is driving this nation into the poor house.

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.

Re: For those who have or know about pseudoseizures

Hey hey MJ-

I am not sure if you have any desire to elaborate on the situation, to explain in more detail what the neurologist feels, the parents feel, the child feels, and also what you feel is happening.

much love,

marty

 

Re: For those who have or know about pseudoseizures

Hey, Marty;
Thanks for the invitation to do this.

I've known the child since the day she was born, and her mom and I have been best friends since we were very young. I have been very involved with the family over the years, and love them immensely. The child and I "hang out" together frequently. She herself calls me her "role-model" and has said she wants to be just like me - she sees her mom as "too fussy and mom-like". The family - including this 12 year old - were a great support to me when I was first diagnosed with seizures 6 months ago. As soon as the mom mentioned her daughter was having seizures, my first response certainly was not "oh, these are not real seizures"!! I gave the parents all the support I could, including the name of a pediatric neurologist who has an excellent reputation.

Since I am close to the family, the parents asked me if I would go along to the appointments with them and their daughter. That is why I know what the neurologist said. Because this was a young child, various tests were expedited. After talking to the girl in private and observing some of the seizures, the neuro. and a psychologist recognized that she was consciously feigning the seizures. The neurologist herself called them a form of psychogenic seizure, so in my initial post I referred to them as such because the neurologist used that terminology. Some of these seizures were videotaped, and with the neurologist explaining to us the features of her episodes, along with her telling us what the child said in private to the neurologist and psychologist, as difficult it was to accept, it became very apparent (or, as I said in my original post "obvious") to her parents and I that the seizures were feigned.

It was also the neurologist and psychologist who suggested the "with-holding of favorite activities approach" and then if that alone was unsuccessful in helping the child realize there was no benefit to having seizures, then trying the placebo. My initial post did not broach the subject of whether I agreed with these techniques. Taking this approach is what the parents decided to do and whether or not I agree is irrelevant; I will support them.

The parents asked me questions I could not answer (those that I posted), and I said I would bring them up with the intelligent and supportive individuals that comprise our forums community.

Re: For those who have or know about pseudoseizures

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

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

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.

Re: For those who have or know about pseudoseizures

stm,

It's nice to see you here.  Yours is a good post.  I personally think PNES is a crock, but that doesn't mean that I don't believe that their are non-epileptic seizures.  By definition, there are.

There is a huge problem here.  Epilepsy is a chronic condition.  Seizures are acute events.  Trying to use the same word for both is a ridiculous and dangerous exercise with disastrous and deadly consequences.

  1. Just because a seizure is not epilepitic, doesn't mean it is psychogenic.  There are many and various types of non-epileptic seizures.
  2. Just because epileptiform activity is not recorded, doesn't mean the seizure wasn't epileptic.  Deep brain seizures can't be recorded via surface electrodes.
  3. EEGs are administered and read by humans.  Humans make mistakes.
  4. An EEG is not necessary for a diagnosis of epilepsy.
  5. A negative EEG is not a rule out for epilepsy.
  6. Lack of response to AEDs is not a rule out for epilepsy.  I was slightly responsive to Valproic Acid (Depakene).  I was slightly responsive to Gabapentin (Neurontin).  I was not responsive to a long list.  I was quite responsive to Oxcarbazepine (Trileptal) and Carbamazepine (Tegretol).  I am surviving on 500mgs Q6 hours of two 250mg tablets of Teva Brand Levitiracetam (Keppra).  I woke up before my alarm this morning from a seizure.  It was nasty.  Just because I'm still having seizures doesn't mean the Keppra isn't working.  I'd be in status without it.
  7. Etc.  I'm too upset for more of this.

PNES, whatever it may be, is just as real as epilepsy.  It is a neurophysiological phenomonon or, more likely, phenomona, that have been dumped into a Psycho Neurologists' garbage can diagnosis called pseudoseizures.  It is a real condition. 

All "Mental Illness" has an organic basis.  The stinks (shrinks, psychiatrists, stynchiatrists) don't want us to know this because "I'm not a Medical Doctor."  What the hell does M.D. stand for?

It's all a power grab with patients paying the price.

The compassion you have for your friend does not surprise me.  You are a good person.  Thank you for this post.

I have suffered terribly from having my neurological symptoms dismissed by parents, teachers, and doctors alike.  I am brain damaged and extremely ill from the combination of abuse and neglect to which I have been subjected.

I am not bitter.  I am hurt.  I am angry.  I am afraid.  I want to live.  I want to live well.  No one can or will give me what I need to do that.

Baruch Hashem.  Hoshia na.

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

P.S. A nice post from the zeelot.

P.P.S. The newest post from the zeelot.

P.P.P.S. The newest reblog from the zeelot.