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Medical Forum / Diseases and Disorders / Epilepsy / July 2004

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Pseudoepilepsy vs organic epilepsy:

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Calypso - 05 Jul 2004 06:58 GMT
please explain this to me. I've been told that I have Pseudoepilepsy:
and or real epilepsy. I have had a VEEG but I did not have a seizure.
the EEG was abnormal. I have had a seizure during a eeg during the
stobe part of the seizure. I wet myself when I seizure sometime I bite
my tough. Sometime I vomit and aspirate and a few times I had have
placed on a vent. And yet the doctors insist that these are
Pseudoepilepsy.  I finally just got pissed at neuros all together
trying to be shrinks and ordered my meds on line. that was fine for a
year I was seizure free for a year but I went into status last week
and now my gp want me to see a neuro and I am having all sort of
anxiety about i.  I really think the facts speak for themselves but I
was in the *.loony* bin 23 years ago for depression and once the doc
hear that...well all they see is a head case.  I'm not sure what to
do.  I'm losing sleep over this. It really nice not having some
condescending know it all neuro in my life who keep telling me I
really didn't have a seizure disorder. Funny thing was I has less
seizures when I stopped seeing them. I'm not sure how to approache the
new doc. So far they say I have a psych disorder and should see a
shrik. well I saw a shrik for seven years and he says I have organic
disorder and the tests prove it. how come the doc ignore the tests. I
really don't act crazy. In fact I'm kind a personable people like me.
David Ruether - 05 Jul 2004 15:24 GMT
> please explain this to me. I've been told that I have Pseudoepilepsy:
> and or real epilepsy. I have had a VEEG but I did not have a seizure.
[quoted text clipped - 17 lines]
> disorder and the tests prove it. how come the doc ignore the tests. I
> really don't act crazy. In fact I'm kind a personable people like me.

Ah, get ready for a RANT!!!
(See the "Complain, complain...! ;-) thread,
above for just a bit of what I went through.)
I do not understand what bit of education
of neurologists is responsible for making
them bad psychiatrists, and deathly afraid
of being accused of having treated a "mental"
condition as if it had been a physical one.
They will do ANYTHING to avoid this,
including treating the patient badly, or not at
all, if ANYTHING does not fit neatly into
their rigid "lexicon" of neurological ailments!
This is disgusting - and it commonly causes
delays in the diagnoses of some serious
disorders and diseases that are not easily
categorized. This is lazy and irresponsible
medicine at its worst! Worse, though, is that
once you have a diagnosis of "head case",
it is very hard to get past this whether or
not it was true, if you then need the help
of a neurologist! I pity you, or me, if we
develop MS, Parkinson's, or whatever
else that is hard to identify at first - these
are often dismissed too long as "in your
head" even without the absurd diagnostic
background. Something needs to change!
The description for the disorder known as
"pseudo/hysterical/dissociative/conversion"
(they never can settle on a name for this
disreputable "ailment") is remarkably
illogical and inconsistent among the many
recognized neurological ailments (among
which this one is the "poor in-your-head
relative" at best...), but even so, it is
considered RARE, with a very SPECIFIC
set of standards for application (poor as
they are), but this diagnosis is used often,
and therefore (by definition) it must often
be used inappropriately.

As for you (from what I've learned), do
not offer any info on previous "mental"
diagnoses. If it is in the records he has
(funny how *nothing else* ever gets
forwarded...;-), say that you saw the
shrink for seven years, and he says its
not mental, but physical, which is why you
are visiting him (and give the history of the
physical part, including the success with
medications). Avoid being sent for referrals
to doctors known to him in any way! (I
learned that one the hard way...!) Insist
on a FULL neurological exam (about an
hour, not the four "quickie" 5-minute ones
I got...), and if the neuro insists that the
short EEG *will* show results between
seizures, call him the quack that he is,
and leave...;-) Take all useful records with
you - *especially* the ones that show EEG
irregularities, etc.! (These are the ones the
neurologist *will not* have copies of
when you visit! ;-) Do not accept an
absurd diagnosis!

For me, if I had not had the help of a
childhood friend who became a neurologist,
I would be sinking ever further from
*physical* causes. Pre-natal brain damage
set me up for minor seizures as a kid and
for sensitivity to problems from oxygen
deprivation later from severe sleep apnea,
plus restricted oxygen during and after
a heart arrhythmia (when I developed a
variety of seizure types that were hard
to define easily). After only a 20-minute
visit (ever! he was new to me), my GP
referred me to a local neurologist for
"pseudoseizures". I learned recently that his
sealed my fate for the nine months of  poor
treatment that followed. It was only through
my own research and the help of my friend
that we identified the underlying condition,
the process, and the treatments that were
consistent with (and affected) the symptoms.
In the end, it was no known disease or
syndrome I had, but a bad set of
coincidences/occurrences that got me into
trouble - the sort of thing that neurologists
are not very good at figuring out (and, as
my friend says, "Conversion Disorder
is the last refuge of the diagnostically
bankrupt!" ;-). When my friend writes up
his report from his thorough neurological
exam, the 4-day EEG results, his
interpretation of my MRIs, and the results
from consulting with his neuropsychiatrist
associate (who also saw me), copies will
be forwarded to the various neurologists
here that I've seen, plus to my GP. This
report will point out the many things that
were missed or overlooked - and the
inappropriateness of their diagnosis.
And, I will have some things to add! ;-)
--DR
Calypso - 05 Jul 2004 23:33 GMT
>Ah, get ready for a RANT!!!
>(See the "Complain, complain...! ;-) thread,
[quoted text clipped - 100 lines]
>And, I will have some things to add! ;-)
>--DR

I liked your rant and I agree. but it really doesn't help me much. I
have copies of most of my tests the normal EEG's and the abnormal
ones. Some of the hospital records where I was placed on a vent. I
thought those might be useful. Some dr. recorded opinions that I most
likely have organic seizures. He gives his reasons the abnormal EEGs
my prolong confused state loss of urine the fact that I injure myself
and biter my tough. Although he does say he is of the opinion that due
to my pas psych history that some of my seizure  are most likely
Pseudoeizues. (one can never get away from the stain of a psych
history can one) anyway I have abut a half of inch of records plus a
narrative from a shrink who says he think my seizure ore organic. Than
other than a mild anxiety disorder I am pretty normal nd function
well. however where I live all neuros know each other. short of
selling my home I really don't think I'm going to find a MD who not be
prejudice. I sure hope I am wrong.
gaross - 06 Jul 2004 00:49 GMT
> >And, I will have some things to add! ;-)
> >--DR
[quoted text clipped - 4 lines]
> thought those might be useful. Some dr. recorded opinions that I most
> likely have organic seizures. He gives his reasons the abnormal EEGs
***************************
> my prolong confused state loss of urine the fact that I injure myself
> and biter my tough. Although he does say he is of the opinion that due
> to my pas psych history that some of my seizure  are most likely
> Pseudoeizues. (one can never get away from the stain of a psych
> history can one) anyway I have abut a half of inch of records plus a
> narrative from a shrink who says he think my seizure ore organic. Than
***********************************************
> other than a mild anxiety disorder I am pretty normal nd function
> well. however where I live all neuros know each other. short of
> selling my home I really don't think I'm going to find a MD who not be
> prejudice. I sure hope I am wrong.
******************

G. -***'s I put above->  That is likely a Specific Medical Phrase, that
means your Seizures have an ***Organic reason.

The Brain Damage I originally had from Encephalitis in 1979 is Referenced by
my Doctors as "Organic Brain Syndrome" <---  That Phrase on the **Medical
forms was sufficient for diagnoses to Identify that the Injury had an
Organic Basis (i.e. Biologic or from an Infection),  and for Insurers to
allow me a Disability Pension, based on the injuries from the Encephalitis.
  If you currently have Disability or Wage Loss Insurance, which has waiver
of premium or Payout Options, that phrase, sent to them (on their Insurance
Forms)  would get you either  insurance for **life with no further premiums
having to be paid, if they don't expect you 'to recover',  OR if it's Wage
Loss Insurance, would get you Income from the Insurance Company--> since you
are classed as Disabled.

  Do you have Mortgage Insurance on your House that had a Disability Clause
in it before you were Diagnosed ??  If you did, your Mortgage Payments would
be paid by the Insurer for the Duration set out in the Insurance Policy.

  I don't follow how a Doctor who will fill out a Disability Form (if you
had *above  Insurance already, before the onset), would somehow be
'prejudiced'   and how that would matter anyway?    My MD can be as
Prejudiced as he wants, but if he fills out those Forms, saying in his
opinion that I have Organic Brain Syndrome, *I'm the one who gets the
Benefits from the Insurance Policies-> my Dr. Doesn't.  G. /
*********
By the way, I don't know where these various Doctors are picking up that
phrase 'pseudoseizures'.   Either they ARE seizures or they're not.  They
should make up their minds.  (Your post above suggested you have EEGs that
Recorded seizure activity.  That's not a **Pseudoseizure-> it's a *Seizure,
or it wouldn't have recorded those millivolts of electrical activity on the
EEG.    I think a Doctor should be able to explain a condition in a form the
Patient or a Parent can understand.  )    /
Calypso - 06 Jul 2004 06:18 GMT
I was injured at work. I still have a mortgage that I pay :) but I
collect SSDI a state retirement and a settlement for workers
compensation. Yet when I got into a local ER I still get we know all
about XXXXXX like I am a faker and a malinger which is why I chose to
stay out of ERs and away from Neuros. BTW my personal MD doesn't think
that about me at all.  But then she has chosen to get to know me as a
person.  She does that with all her patients. She really is an
exceptional Doctor and I am lucky to have found her.

>> >And, I will have some things to add! ;-)
>> >--DR
[quoted text clipped - 51 lines]
>EEG.    I think a Doctor should be able to explain a condition in a form the
>Patient or a Parent can understand.  )    /
Julie - 07 Jul 2004 01:53 GMT
I did a search on the efa.org site and found an explanation of
nonepileptic seizures.  One of the paragraphs stresses the importance of
recognizing that the person who has this type of event is not faking, and
that it is important to have this diagnosed so the patient can be properly
treated.
The paragraph reads as follows:

Do you mean that people having psychogenic nonepileptic seizures are
faking?

No. It is very important to recognize that these seizures are real events,
although they are different from epileptic seizures. In the past, they
were sometimes called "pseudoseizures" or "hysterical seizures" and people
having them were thought to be making them up or trying to get attention.
We now know there is nothing false or insincere about these seizures, and
it is important to diagnose them correctly so that people who have
nonepileptic seizures can get appropriate treatment.

Nonepileptic Seizures
http://www.epilepsyfoundation.org/answerplace/Medical/seizures/types/nonepilepti
c/weinonepilepsy.cfm


Take care,
Julie Walton, Volunteer Webmaster
Epilepsy Foundation of Idaho
http://www.epilepsyidaho.org

> please explain this to me. I've been told that I have Pseudoepilepsy:
> and or real epilepsy. I have had a VEEG but I did not have a seizure.
[quoted text clipped - 17 lines]
> disorder and the tests prove it. how come the doc ignore the tests. I
> really don't act crazy. In fact I'm kind a personable people like me.
David Ruether - 07 Jul 2004 15:59 GMT
> I did a search on the efa.org site and found an explanation of
> nonepileptic seizures.  One of the paragraphs stresses the importance of
[quoted text clipped - 21 lines]
> Epilepsy Foundation of Idaho
> http://www.epilepsyidaho.org

I checked out this web page on "hysterical/pseudo/dissociative/conversion-disorder",
as I have many others, having been diagnosed with this myself by local neurologists
(after little or no testing...), and this is one of the best sites I've seen, *as far as it goes*.
As I pointed out in my earlier post, though, neurologists tend to "run" with this
diagnosis, applying it often, and *even when presented with hard evidence indicating
the contrary*. THAT is the problem with this! Studies show that of the percentage
diagnosed with this ailment, on further examination (or with waiting for more prominent
symptoms to appear), 3/4ths turn out to have physical causes for what is diagnosed
as a mental ailment. IT IS RARE, when it is carefully and accurately diagnosed, and
the diagnostic standards are VERY specific, and do not apply as generally as reading
this web site would indicate. This web site also does not reveal that the common
treatment takes 7-10 YEARS, and that AEDs may be used during treatment (ones
that have other functions, like Depakote, with bipolar disorder - gosh, should we be
surprised that success is claimed for the treatment?! ;-). It is all too easy to "blame the
victim" on this one (and the original poster, who stood up here!) and assume that
doctors, who too freely apply this stigma to people, are correct. Often they are not!
This web site gives the impression that good treatment is to be assumed, given by
competent doctors in an orderly manner, working toward a "scientifically"-derived
diagnosis, with appropriate treatment prescribed at the conclusion of the process.
This view does not account for the realities of medicine and of the nature of those
who practice it (the view is "utopian", rather than realistic). I would bet that the
diagnosis of this "ailment" hurts more people than it helps (due to the delaying of
treatments for physical ailments, and due to the increasing of mental stresses during
times that are already confusing and troublesome for patients from the symptoms
of the physical ailments [not to mention the stresses that psychotherapy puts on
personal financial resources]).
This 2000 year old "ailment" (first named, BTW, for women ["hysterical"], and
ascribed as being three times more likely to occur in women as men [surprise! ;-])
really needs to be rethought in terms of its definitions, and of its placement as a
valid part of neurology.
(footnote: Many of the "non-standard" seizure characteristics that led neurologists
to believe that a symptom display was "incorrect", and therefore suspected as
psychogenic, are being found to be possible from physical causes. As a result, many
types of seizures that were once thought to be impossible ["boot and glove" paralysis,
for instance] are now known to be possible. And as my own local neurologist said,
"Neurology is the history of recognizing that what was once thought to be impossible
as neurological symptoms, is now known to be possible - but he couldn't make that
final leap for me, even though we had an underlying condition, process, symptoms,
and treatment.)

--DR
Calypso - 10 Jul 2004 04:50 GMT
>I did a search on the efa.org site and found an explanation of
>nonepileptic seizures.  One of the paragraphs stresses the importance of
[quoted text clipped - 21 lines]
>Epilepsy Foundation of Idaho
>http://www.epilepsyidaho.org

That is what is *said* what is in fact practiced. The reality is blame
the patient. Just read what  Dr. H. Ronald Fisk, the defense-paid
neurologist said about the girl in the Haidl case. Makes one want to
puke and he is all to common.

>> please explain this to me. I've been told that I have Pseudoepilepsy:
>> and or real epilepsy. I have had a VEEG but I did not have a seizure.
[quoted text clipped - 17 lines]
>> disorder and the tests prove it. how come the doc ignore the tests. I
>> really don't act crazy. In fact I'm kind a personable people like me.
David Ruether - 10 Jul 2004 15:11 GMT
> >I did a search on the efa.org site and found an explanation of
> >nonepileptic seizures.  One of the paragraphs stresses the importance of
[quoted text clipped - 21 lines]
> >Epilepsy Foundation of Idaho
> >http://www.epilepsyidaho.org

>Calypso wrote:
>
> That is what is *said* [but not] what is in fact practiced. The reality is blame
> the patient. Just read what  Dr. H. Ronald Fisk, the defense-paid
> neurologist said about the girl in the Haidl case. Makes one want to
> puke and he is all to common.

I had sent my MRIs, a video of some of my seizures, and a written
history of my "events", medications, etc. to a friend in another state
to forward to a neurologist who had helped him with his mother.
This was for the purpose of getting another opinion. Fortunately,
I found a reference to this neurologist on Google (the only one I
could find). It was a court case in which she had testified that the
plaintiff had "conversion disorder" (but was not "malingering"), and
she did this in the face of hard physical evidence that he had a
serious injury! She claimed that a broken vertebra in the neck should
not cause pain for the time claimed (not significant...), and that he
could not have spent the amount of money he claimed out of pocket
for treatment for this (not significant, by today's standards - $30k!).
This diagnosis was apparently also without examination. I immediately
gave my friend very clear instructions NOT to approach this
neurologist AT ALL! I think this "rot" in neurology is more pervasive
than people believe, including a very nice doctor I've been corresponding
with at a medical school not far away. He still believes that this ailment
is rare, and is not often diagnosed ("Actually conversion disorder is a
rare diagnosis.", and, "This kind of diagnosis is virtually never used."),
though I tried to convince him otherwise, hoping to get his aid in
some attempt to better educate doctors away from using this harmful
diagnosis. Perhaps my neurologist friend and I *do* have the makings
for an article in JAMA...;-)
--DR

> >> please explain this to me. I've been told that I have Pseudoepilepsy:
> >> and or real epilepsy. I have had a VEEG but I did not have a seizure.
[quoted text clipped - 17 lines]
> >> disorder and the tests prove it. how come the doc ignore the tests. I
> >> really don't act crazy. In fact I'm kind a personable people like me.
 
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