Medical Forum / Diseases and Disorders / Epilepsy / July 2004
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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