Colon Cancer Systoms

thank you, and thankyou all for coming. epilepsy is one of the mostmisunderstood of diseases. even the word seizurecomes from being seized by supernatural forces--the gods or the devils, depending upon whichcentury you're in. and if epilepsyis misunderstood, then the condition psychogenicnonepileptic seizures is even more misunderstood. in fact, very few of mypatients have ever heard of it,

and probably mostprimary care doctors have not heard of it as well. and yet, it's pretty common--at least in referral centers, it's very common. and it is often misdiagnosed,and it is often mistreated. so it's great to be invitedto have an opportunity to talk about thismisunderstood condition and see if we canshed some light and answer some questions.

we have with us a moderator,dr. ariela karasov. and i will turn overto you for questions. and please feel free todirect questions to any of us. and we will feel free toanswer any of the questions as best we can. well, thank you, all of you,for joining us this evening. and thanks to theaudience for being here. we'll start withyou, dr. fisher. before talking about psychogenicnonepileptic seizures, or pnes,

and how they differfrom epileptic seizures, could you say a word aboutwhat are epileptic seizures? sure. an epileptic seizure is anelectrical storm in the brain. normally the brain cellsfunction fairly independently, with a lot of chatter. if they fire too synchronously,too much together in too high a surge of voltage,then a seizure results. and the type of seizuredepends upon where in the brain

that abnormalelectricity comes from. if it comes from themotor control area, you may have twitchingof your hand. if it comes fromthe visual area, you may see lights orvisual hallucinations. if it comes fromthe temporal lobes on the side of the brain,the most seizure-prone part, then there may befumbling, confusion, loss of memory, robot-likebehaviors called automatisms.

and if they spread tothe entire brain, then you have what is oftencalled the grand mal, or more officially, thetonic-clonic seizure, with stiffening and shaking. now, a psychogenic seizure isdifferent in that it does not have the electricalstorm associated with it. but physically,it can look rather similar to an epilepticseizure and can take some work to diagnose which is which.

let me show youeach-- one of each. and you can see that there'ssome similarity to them. i've got permission toshow these seizures, but i'd rather anonymize themanyway, cutting off the head. well, i didn't reallycut off the head-- just photographically. so you can see this isan epileptic seizure. and it's in thetonic-stiffening stage. at this point, the personwould be unconscious.

and even though theymight be making a cry if we had theaudio with it, it's because of the expelled airagainst the closed throat. we think it's notbecause of pain. and now it is in theclonic jerking phase. these seizures go on fortypically a minute or two minutes, and then the personslowly wakes up, usually not remembering any of it. this is a nonepileptic seizure.

and experts mightbe able to tell them apart due to theasynchronous movement of the limbs or thetype of movements. but it can be pretty hard. you can see that there's a fairamount of shaking and movements that occurs witheither of these. now, in the case of thenonepileptic seizure, the brain waveactivity-- and this is 10 seconds of brainwaves from different parts

of the head, called an eeg. the brainwave activity is niceand low voltage and regular, and there's evensomething called-- what looks like a sinewave, for you engineers-- a 10 per secondalpha rhythm, which is the brain's healthy idlingrhythm in the brain, which you would never see duringa generalized tonic-clonic seizure. and here is atonic-clonic seizure.

and the amplificationhere is turned down, so that really thisis twice as big as it looks compared to this. but you can see the high voltagerhythmical and synchronization across the head activities. so we can tell an epilepticfrom a nonepileptic seizure from the eeg if wehappen to record it, say, in an epilepsy-monitoringunit during the event. in other cases, we have touse other clinical factors

for the two of them. does that to answer yourquestion, dr. karasov? that does. thank you very much. and dr. fisher, arethere are some conditions that imitate epileptic seizuresbut are not epileptic seizures? that too is a verygood question. and there are many of them. one of the most common wouldbe a fainting-type event,

which is called syncopyin medical terminology. there also can be sleepdisorders-- people who fall asleep inappropriately. perhaps they have narcolepsy. perhaps the neurosurgeryor psychiatry interns-- and they're up all night. and these get confusedwith seizures. people who have severemigraines can sometimes become confused, even withouta very large headache.

and those are particularlyhard to diagnose, if there's a fluctuationfrom migraines. hypoglycemia and other metabolicconditions can cause seizures. and there's a wholechecklist of imitators of seizures on a medical basis. then aside from the medicalimitators of epilepsy, there are thepsychiatric imitators of epilepsy, whichyou'll be hearing much more about from mycolleagues later in the talk.

perhaps we can turn themicrophone over to dr. kanner. and dr. kanner, what arethe psychological imitators of seizures? so among the more frequent typeof imitators are panic attacks. very often in the courseof a panic attack, an individual mayperceive that they may become somewhatconfused in their thinking as they hyperventilatevery strongly. and these can be interpretedby the emergency room physician

as, oh, you probably had loss ofawareness of your surrounding, your probably hada focal seizure. nightmares, nightterrors, often can be associated with a diagnosisor a misdiagnosis of epilepsy. then you have, notinfrequently, individuals who have a condition knownas intermittent explosive disorder. this is a conditionwhere individuals start becoming increasingly agitated.

and it can increase inintensity to the point where they become violent. and at the end, theyhave no recollection of what transpired. and that lack ofrecollection-- it's often interpreted asa possible seizure. and we often willsee these patients in the epilepsyclinics for evaluation for seizure disorders.

interestinglyenough, individuals with intermittentexplosive disorders will improve withantiepileptic medication of the type of theantiepileptic drugs that have mood-stabilizingproperties, such as carbamazepine. and so that furtherenhances the confusion. and then you have individualswith autistic spectrum disorder that have a lot of mannerisms.

and as part of their mannerismand behavioral patterns, they may often be confusedas epileptic seizures. and as dr. fishermentioned, the best way in kiddies with autisticspectrum disorder of distinguishing whetherthese are seizures or not is by doing a bdgmonitoring study. i'll turn the nextquestion to dr. barry. and dr. barry, whydo people have pnes? that's another good question.

the answer, however, i thinkis hard for us really to know. we understand a lotof the phenomenology of these particular events. the etiology of theevents, however, is really unclear to us. we have ideas. and the ideas basicallycome from the ways in which these episodesactually present and the context inwhich they present.

so if you ask why, itmay be a manifestation of severe depression. we consider this really acommunications dysfunction. and we can go in and talk alittle bit more about this. but the way we considerthis is many of these people have severe anxiety disorders,as andy was just talking about. they also have episodes of ptsd,post-traumatic stress disorder. many of these folkshave been injured as a child in a variety ofdifferent unfortunate ways,

which has resulted in themdeveloping a communication deficit. in 1975, petersifneos, actually, from massachusetts, talked abouta disorder called alexithymia. and the greek basicallymeans something for which they have no words. and many of these peoplesuffer from alexithymia. you have to rememberthat when you were all kids, and yourparents-- when you were growing

up and you hadsomething happen to you, your parents wouldlabel that for you. in situations, however,where the parental situation is nonfunctional, peopledevelop a way of communicating. and the way theycommunicate is somatically, by physicalmanifestations rather than being able to labelemotional situations. so that's a long answerto your question. we also are startingto look, actually,

at some of the neurologic,anatomic underpinnings. the diagnosis actuallyof pnes really has changed in someways-- at least the nomenclature in the dsm-5. now these are calledfunctional neurologic disorder. and i actually really like thatterminology, because that's kind of what it is. it's a functional disorder. and i like it when i presentthe diagnosis to patients

too, because many times thesefolks have been picked up by emt or doctors inthe emergency room, and you would never expectanybody to say anything to them-- like you'refaking it, or this is not real, or whatever, thatanybody would actually say that to an individual. but they do. and what we'reunderstanding now is that this is a functional,anatomic, physiologic process.

so we have a lotto understand more about this particular disorder. but that's kind of a longanswer to your question. i see that dr. fisherhas something to add. john, we often treat thesame patients together-- me from the neurologicaland you from the psychiatric standpoint. a lot of the onesi've seen have either suffered some form of abusewhen they were younger

or they're in some situationin which they can't cope. and we use words here likefunctional and conversion could you say a littlebit about what those words mean in that sort of situation? absolutely. it's funny youask that question. [laugh] conversiondisorders actually is a terminology that is reallyancient-- ancient in the fact that it goes back to the 1800s.

and it was a terminologythat was coined by freud. and he basically wastalking about a conversion of an emotional conflict intoa physical somatic presentation which resolves thatparticular conflict. i oftentimes usethe analogy of a boy getting angry at hisfather, ready to hit him, and realizes thathe can't do that, and developing a paralysisof that particular arm. so he's convertingbasically the conflict

into a physicalmanifestation, and thus the terminologyconversion disorder. most of the time,it's really hard. there may be aspects ofthat in most situations. i don't think that'snecessarily true. but it's a terminologythat's been used in the past. and i like functional better. i think that that is moreapropos to many of the cases that we generally see.

i just wanted to addone other perspective. and first of all, thepsychogenic nonepileptic seizures have verypleomorphic condition. so there are many causes. and there are acertain percentage of patients who, whenyou do an evaluation, you don't identify at thetime of the evaluation any current psychopathology. and very often, justby telling the patient,

you don't have epilepsy. these are notepileptic seizures. you don't need tobe on medication. the patient goes homeand the events stop. and so these areindividuals in whom probably whatever triggered theevents is not operant anymore. and what maintained thepersistence of this episodes was the fear of having epilepsy. and then you tell them, no,you don't have epilepsy,

and it's gone. so i think we have to alsokeep that concept in mind, because very oftenpatients will tell you, but, doc, i'm not depressed. i'm not anxious. my life is going well. and we have to take himat their face value. it's not that they'retrying to deny [inaudible]. very often that can bealso [? annoying. ?]

whatever triggered itwas not operant anymore at the time of the evaluation. and if it'saccumulated stress, it may not be stress of themoment, of the attack. right. yeah. so that leads nicelyinto my next question, which is for dr. barry. is it current or past stress,and if it is past stress,

why would there be a delay? it's actually both . so the way i, again,look at it is, again, is a communication dysfunction. i think the thing thatandy just mentioned, i think, also bears alittle bit of expansion. and that is, when a patient goesto a unit like andy's or our's here at stanford, they'reseeing a neurologist. the neurologist understands--sits down, talks to them.

they get their communicationmessage across. they're listened to. their appointments are madefor them for the future so they're not abandoned. they'll becontinuously followed. so when thesemiraculously go away, they don't miraculously go away. they go away because,in many ways, the function of theseparticular events

actually has been fulfilled. so as far as past stressor conflicts are concerned, past stress,especially as a child, can cause permanentneurologic damage. and so it's importantto remember that. we're learning much moreabout that particular aspect of all this. i mean it affectsbrain function, again, on a permanent basis.

these are peoplewho have deficits that, because of theirparticular backgrounds, will be with them forever. it doesn't mean thatit's insurmountable or that you can'ttreat it or they can't learn alternate waysof developing and dealing with issues and problems. but that achillesheel will remain in some particular capacity.

why does it happen now? there's usually aprecipitating event, and it can be a varietyof different events. it may remind themof a previous trauma. it may be, as bob actuallywas talking about, something that just overrunsany kind of coping strategies that they have, andbecause of that, manifest in this particular fashion. the next questionsyou're going to ask-- i'm

going to usurp yourrole here for a second. and that is i think theseare incredibly fascinating. i mean, when you look atwhat bob just showed you, and that this is a psychologicphenomena that actually took place, i think that'sreally a fascinating phenomena. but the issue is thatsomatoform disorders is what these used to be called. and somatoform disordersare very common, and it's not only in neurology.

we can go through everybranch of medicine, actually, and each branch has theiraspect of psychological physical manifestations. you can do-- certainly with gi. you talk about ulcers,irritable bowel syndrome, cardiovascular disease,dentistry, and tmj. so we can go through. this is not anuncommon phenomena. it may manifest differently indifferent patient populations.

and the next questionis, why does that happen? and i don't know. i wish i did. but i think it's fascinating. but it's reallyvery, very common. and again, that difficultyreally expressing your emotions,talking, communicating, and having it be asomatic communication is the way this actuallyhappens frequently.

often times peoplewill say, i don't know why it happens at night,because i'm totally relaxed and rested at night. why should thatactually take place? and the way igenerally understand is, you all remember whenyou were back in biology 304 and you had yourbig exam-- whatever. and you got through thatexam, and afterwards you thought you'd be feelingfantastic, and you're not.

it's after the emergency. you get yourselfthrough at all costs, but it's after the emergencyis when things fall apart. there's one otherobservation i wanted to add to whatjohn said, and that is that in additionto the events that you see happening with a patient--headaches are very frequent. and i don't know if you'vehad that experience. but in experience,a vast majority

of patients with psychogenicnonepileptic seizures report constant headaches--and sometimes to the point where we have to refer themto our headaches specialist, because they don't respondto pharmacotherapy. and so this isjust to illustrate the complexity of the problem. and let me expand on that. it's not just headaches. it's also pain in general.

so pain disorders are extremelyfrequent in this population. just remember also that peoplewith depression-- and many of these people have episodesof major depression in the past or have a depressionat the present time. somatic complaints andpain disorders-- i'm sorry? mic further away. further away? is this good? halfway.

halfway? like that? ok. so pain is very, very frequentin this patient population, too. so it's not just headaches. and i think andy'sabsolutely right. it's frequently seen. but pain complaints of avariety of different disorders

are also very frequent. think of thingslike fibromyalgia, chronic fatigue syndrome--those sort of things i think are also very common inthis patient population. i think all of yourcomments nicely highlight the ways inwhich the mind and the body are intertwined inthese disorders, and in somatoformdisorders in general. so thank you for that.

maybe we can turn the microphoneover to dr. kanner, then. are these episodes ina person's control? so again, as i alluded before,psychogenic nonepileptic seizures is a verypleomorphic condition. and you do have a smallpercentage of patients-- and in my opinion,it's a small percentage of patients, who have whatwe called malingering, which is a form of avolitional movements or events that areunder their control.

but in my experience,it's actually a very smallpercentage of patients. and these arepeople in whom there is a gain to be made fromhaving these episodes. i remember patientswho were suing somebody because of injury,and they've developed these kinds of things. this is the kind of things. that i think themajority of patients

don't have a conscious control. and i think this is a veryimportant concept that needs to be transmitted to thepatient and the family members, because it is oneof the big fears that patients experience--that it s going to be thought that they've been making it up,that they've been faking it, that they are doing itto attract attention. and it's one of the causesthat patients may react-- why are you saying that?

i've been told i haveepilepsy all these years. and i make it a point toclarify not only to the patient but to the families thatthis is not something that is being done volitionally. whether the mechanismsthat are operant in causing these episodes-- i thinkit varies from one patient to another. and patients, over time, througha variety of interventions and now cognitivebehavior therapy

has been found to be aneffective treatment of helping patients to have lessof these episodes, or even stop having theseepisodes, can, in a way, give the impression thatpatients are under control. john used to-- and youstill do-- hypnosis in order to identifytriggers of these events. but in the majority,this is not something that patients canstop like that. i just want to second that.

i used to run a grouphere with patients with nonepileptic seizures. ariela's running one right now. and one of the messages at theend of the group-- everybody had all of theirevents-- actually, by the end of the group, whichactually was eight or nine months long, by the end ofthe group, everybody had their seizures under control. they didn't have any more oftheir nonepileptic events.

and they say, when you goout and talk to people, ask them at the end--what do you want me to do with this information? well, publish it,but go talk to people and tell them theseare not pseudo. they used to becalled pseudoseizures. please tell them thatthese are not pseudo. that has a verypejorative quality to it-- that we didn't havecontrol of these events.

we've identifiedtriggers and reasons why these things happen. we've been able to control it. we've learned about it. but we had no control of it. please go tell people thatthese were not pseudoseizures, that these are real eventsthat happened to me, and i had no control over it. i think that's a very importantmessage, and one that's

important for patientsand their families to share and to educatemore of the population about this disorder. dr. fisher, i havea question for you. how do you make a diagnosisof nonepileptic seizures? we have marvelous technologynow in the neuroscience field. but the diagnosis ofseizures and epilepsy, which is the condition ofspontaneously recurring seizures, is still mostlymade by the history.

that's the first point. we take the descriptionof the events and we use ourexperience to tell us, is it an alterationof sensation, motor function,behavior awareness, punched out in time, somewhatstereotyped if it repeats. that sounds like anepileptic seizure. or does it sound likesomebody fainting when they stood up to suddenly?

or somebody fallingasleep who can be aroused? so we take the history. if johnny has a, quote, seizureevery time jimmy takes his toy, it's probably not anepileptic seizure. because that's nothistorically consistent. it's some type of behavioralepisode that's occurring. so the most important thing isto start with the description of the event. and we also look forpsychiatric factors.

it used to be saidwhen i was in training that a psychiatric diagnosisis a diagnosis of exclusion. you have to rule outeverything else first. well, that's not true anymore. there are criteria. there are things to look forin a person's background that are risk factors for psychogenicnonepileptic seizures. we heard some of them. the only thing isyou can't assume

just because they're therethat that's what the answer is. you have to look fartherand you have to confirm it. we take a history. we do an exam tosee if there are any signs of neurologicaldamage that would go along with epileptic seizures. we run an eeg. an eeg is anelectroencephalogram. it's brain waves.

it shows the upand down voltages across a person's head,because the brain is an electrochemicalorganism, rather like a car battery for a tesla-- although abit more complicated than that. so with epileptic discharges,we have that high voltage storm. but half of thepeople with epilepsy will have what we callspikes-- abnormal surges of electrical activitybetween seizures. so somebody has asomewhat convincing story

and has those spikes, theni'm fairly convinced that's likely to be seizures. these eegs are normally30-minute, one-hour affairs in the outpatient clinic. so we don't usually capturethe seizure event itself. we're looking forthese epileptic spikes between seizures. however, if it's importantto capture an event, then we can do some type ofmore prolonged monitoring.

we can send people homewith an eeg headset for 24, 48 hours, that willrecord it on a cartridge and look at all later,when they bring it back in. they can push abutton if they had what they thoughtwas a seizure, and we can see what are their brainwaves doing at that time? and then the gold standardtest is the inpatient video eeg monitoring, and what's oftencalled an emu-- not only an australian bird,but also standing

for epilepsy monitoring unit. and in that circumstance, we maywithdraw medication-- something that would not besafe on the outside, but under directsupervision it can be made safe-- toprovoke the events, record the video, audio,brainwave picture, and make a determination ifthose are epileptic seizures. in some cases, despite our bestefforts, we still can't tell, and then we may do what'scalled a therapeutic trial.

we just made try someanti-seizure medicines, if we think that'sthe avenue to try. or we might tryanti-depression medications, if we think that's the avenue. or we might use medicationsthat might address both and see what happens. so it's a process. one of the advantagesof practicing medicine in the 21st centuryand having smart phone

is that today we canask family members to take your smart phoneand videotape the event. because that often can helpus capture the actual event. and while most of the timeif it a convulsive event you could reach aconclusion of, yes, this doesn't look like anepileptic seizure. you have to also keep inmind that certain events can have clinicalcharacteristics suggestive of psychogenic nonepilepticevents, and maybe

clinical seizures. and the othernonconvulsive events, where the individualjust sits there, stares, and is unresponsive, those aremore difficult to distinguish. but use the smart phonetoday to capture the events. you bring it to theconsultation, to a physician. you'll save a lot of money. to make this just a littlebit more complicated, people with epileptic events canalso have nonepileptic seizures

as well. so maybe 10 to 15plus percentage of patients with epilepsy canalso have nonepileptic events. so this becomes muchmore complicated. it's not an either/orproposition, either. so you have to payattention to that. people with tbis, forexample, have seizures, as bob originallytalked about, as far as kind of overwhelmingyour ability to cope.

certainly a lot of cnsdisorders can certainly overrun somebody'sability to cope and result in nonepilepticseizures, but they also may have epilepsy too. so it makes it muchmore complicated. i just wanted to illustratea point that has not been emphasized, and that isthat people can walk around with a diagnosis ofnonepileptic seizures for years. and one out of everythree to four patients

that come to our epilepsymonitoring unit-- and not only ours in miami,but throughout the country and throughout the world--don't have epilepsy. and many of themhave been treated as if they suffered fromepilepsy for years and years. and so that'ssomething that one has to always keep in mindwhen evaluating patients with events. i've had severalpatients referred to me

for brain surgery tocure their epilepsy who had psychogenicnonepileptic seizures. we didn't do the brain surgery. dr. fisher, maybe youcould say a little bit more about those patients whohave, as dr. barry brought up, both epileptic andnonepileptic seizures, which certainly sounds likea complex patient group. that would be our mostcomplicated or complex patient group-- people who have both.

even that group issomewhat diverse, because you mayhave someone who had epileptic seizures as a child. and then they mayhave gone away, and now other eventsare occurring. so we assume thatthey must just be the adult manifestations ofthose childhood epileptic seizures. but, in fact, thesenew events are really

something different, andtheir psychogenic nonepileptic so that is one scenario. and that's been fairlycommon in my experience-- almost as though thebrain has somehow learned how to haveepileptic seizures and is in that kind of groove sothat when other symptoms happen that convert from theemotional to the physical, it takes that pathway. i speculate a bit on that.

the hardest patientsof all are those who are having epilepticseizures on monday, and nonepilepticseizures on tuesday. the best way toget a hold of those is to do the videoeeg monitoring and explore with thepatient and the family, what does this onelook like to you? how many of these doyo u have at home? what brings these on?

how about those? what brings those on? and in that circumstance wherethey have both condition mixed, we clearly need touse a dual approach-- both anti-seizure medicationsand psychiatric treatments that we haven't talkedabout yet, but we will-- and take a very comprehensiveapproach to the patient. but they can be verydifficult to treat. i think one group whereyou may see a higher

prevalence of bothepileptic seizures and nonepilepticevents are individuals with cognitivedevelopmental delay. and these are individuals whostart with epileptic seizures, and eventually they learn--when i have my seizures, i don't have to goto workshop, or i don't have to do this or that. and so it becomes likea pavlovian response. and again, it's notthat they're doing it--

they're faking it [inaudible]. it's just a learned behavior. and they're not doingit to attract attention. in my experience, it's more ofan avoidance-type of behavior. and some studies havesuggested that among people with nonepileptic seizuresthat are cognitively impaired, 40% will also have epilepsy. so the morbidity is higher. it's actually a good example.

we'll talk about treatmentsin just a little bit. but whenever i see anyadult or child that comes in with adevelopmental delay that we're concernedabout the possibilities of these being nonepilepticevents, what i usually realize is that you have to sit down. you have to find out aboutthe system and what's going on in the system. you have to do that generally,but in this particular patient

population in particular. because what'shappening is sometimes it's a stressresponse that there's something going on in thegroup home that's problematic, or an individualin the group home they're having a lotof difficulty with, or a romanticbreakup, or whatever. and it'll be manifestednot in words, because words can't be usedin this particular situation.

it will be manifestedin behaviors. and so it's actuallya good example of what happens inpeople who do have cognitive abilitiesof a normal range and also have verbalabilities but i haven't been ableto use them for one particular reason or another. it's a similarkind of situation. along those lines, and thinkingabout stress, dr. fisher,

can stress provoke epilepticseizures or just pnes? clearly both. surveys of people who haveordinary epilepsy, not psychogenic nonepilepticseizures, typically when asked will list stress as thenumber one provoking factor for their seizures. there are many otherprovoking factors-- missing sleep, missingmedicines, physical illnesses. some people may be provoked bysugars or dietary indiscretions

and alcohol and so on. but stress is oftenlisted as number one. but it isn't aone-to-one relationship. it's not every momentthey get stressed they have an epileptic seizure. if that appearsto be the pattern, then i'm thinking it'sprobably not epileptic. and of course we've alreadytalked about the role of stress in pnes, psychogenicnonepileptic seizures.

it's very major. but it's often remotestress-- sometimes, perhaps, is it fair to say, with therecent reminder at some level, maybe not an obvious,but a subtle reminder, of that past stress. so stress is a common faceto both of those conditions. and dr. kanner, we know thatstress accompanies a variety of psychiatric conditions. do other psychiatricconditions tend

to accompany pnes, orpsychogenic nonepileptic seizures? and if so, what should be donefor those comorbid psychiatric conditions? so john already alluded to that. as i said, psychogenicnonepileptic events is a very pleomorphic condition. and in many of these patients,you will identify depression. and that longhistory of depression

is among the most frequentcomorbid conditions. very often it's notonly depression, it's depression andanxiety disorders. and you're going to needto treat those underlying conditions. so those are the mostfrequent conditions. post-traumatic stress disorderis a big comorbid condition. and you can have,associated with that, panic disorders that oftenthe panic attacks often

gets misdiagnosed asepileptic seizure. so you have all of that spectrumof mood and anxiety disorders. personality disordersare not unusual in people with a long history ofpsychogenic nonepileptic and this is alsoseen in people who have been victims ofvery traumatic lives throughout being victims ofsevere abuse and neglect. very often you identifyattention deficit disorder coupled with mood disorders,and the combination

of attention deficitdisorder and a mood disorder lead to thesepersonality disorders, when these peoplegrow up and they've been victims ofadversive situations in their life, particularlyabuse, it's the perfect storm. and this makes treatmentof these patients quite challengingfor a psychiatrist, neuropsychologist, psychologist. and so you have to do a very,very careful and detailed

psychiatric historyin order to identify the psychiatriccomorbidities, as i said. because essentially psychogenicnonepileptic seizure is a neuropsychiatric disorder. and as john was saying,it's a condition where we arestarting to identify certain neurologicalchanges in the brain and neurochemical changes inthe brain with very strong psychiatric manifestations.

but the treatment is apsychiatric treatment. and that's your target. you really have to doa very careful history. thank you. and dr. kanner? how do you tell someone thatthey don't have epilepsy, but have pnes? so that is anexcellent question. and this is one of what i liketo call the art of medicine--

when we present the diagnosis. you have to be extremely,extremely careful how you present the diagnosis. because it's not as easyas saying, great news. you don't have epilepsy. you don't have to takeall these medications. bye. you know? have a good life.

it's not as simple as that. because what you're doing inmany of these individuals is, you're basically changingtheir entire perception of their life. you're taking away theidentity as somebody who has lived around their seizures. and all of a sudden,you tell them, no, you don't have epilepsy. the other--

[interposing voices] [inaudible] replace that with. so this is what i--i'll tell you what i do. first of all, i'velearned through the years that telling the patient youhave a psychogenic disorder, psychogenic seizure, very oftenis encountered with a barrier. what do you mean psychogenic? what do you mean? are you saying i'm crazy?

or are you sayingthat i am faking it? and so the first thing i sayis, you don't have epilepsy. well, what is it, doc? well, these are events thatmimic epileptic seizures. and this is the reason thatit mimics epileptic seizures. i show them the eeg recordingof a person with epilepsy. i show them their eeg. i say, you see? there aren't these patterns.

but what is it, doc? well, these arethings that happen in people who've had a historyof anxiety, depression. we see it in individualswho've been victims of traumatic experiences. we are seeing it now insoldiers that are coming back from the war theaters. and it's a way of theirbrain to protect them from traumatic experiences.

does that sound like thismay be applying to you? and i let them see if theycan identify with this. because that may be the most--because if they're telling me, oh, no. that doesn't apply to me. what that tells meis, doc, i'm not ready to hear thatthis is psychogenic. and i can bang themin the head all i want with telling themthis is psychological,

and they'll just builda thicker barrier. so my approach in thoseindividuals is to say, ok. well, i don't know whatit is, what's causing it. we can do a neuropsychologicaland neuropsychiatric evaluation to identify. and then if theysay, oh, no, no, no. i don't need that. that tells me evenfurther-- i'm not ready to hear whatyou're trying to tell me.

so what i do with thosepatients is i say, ok. the most serious complicationis of you having these events, ending up in an emergency room. the doc in theemergency room is not going to know that theseare nonepileptic seizures. and because these events oftenmimic recurrent seizures-- what we call status epilepticus. you can end up in an intensivecare unit, intubated, and doctors giving youa lot of medication.

so you need to avoid goingto the emergency room. i also explain these events arenot causing you brain damage. the electrical activity ofyour brain is not affected. so this is in onegroup of patients. my experience has been,however, that people who've been victims of abuseor traumatic experience are readily able to say, yeah. i was a victim of rapewhen i was a child or when i was an adolescent,or this happened to me.

so a majority of patients--if you present it in that way, will be able to tell you. and then you askthem, well, do you remember what itwas like when you were being raped by so and so? and very often patients willtell you, i don't remember. my body was there,but i wasn't there. and that allows you tomake the connection. so just like your bodyis protecting you,

your mind is protectingyou from experiencing the traumaticexperience of the rape. eventually this is amechanism of defense that your minduses to protect you from facing certain situationsthat are uncomfortable. so it's a-- finish your thought. so you normalize it forthem so that it becomes an acceptable option, you see?

but i think that thebig error that we make is going to apatient and saying, oh, you have psychogenic events. go to see a psychiatrist. goodbye. because then we'rebuilding up the barriers, and that results in amore difficult referral to the treatment. i want to emphasize that forany people who are listening .

i've been doing this for 30years, and it's gotten better. but many neurologists justhave a terrible approach to psychogenicnonepileptic seizures. you're hearing from dr.kanner and dr. barry how it should be approached. but the usualapproach that we see is what we calleddiagnose and adios. the neurologist all of a suddensays, this is psychiatric. it's not my business.

it's just another form ofabandonment in their life. whereas, this is aneuropsychiatric condition, and it needs a jointeffort between neurologists and psychiatrists over thelong term to take care of it. you can see how we oftenfail our patients who are really suffering. i also wonder,are there patients for whom there is noidentifiable stressor or trauma but who have pnes?

i'll defer to dr.kanner on that. oh yes. as i was saying before,we actually did a study a few years agowhere we actually tried to identify where thepredictors of, the cause of pnes after the diagnosis. and we found that about20% of the patients, we couldn't identify atthe time of evaluation any psychiatric conditions.

those patients did wellwhen they were discharged. they stopped having the events. we actually followthe patients after. i am a strongbeliever that you have to follow the patients,for various reasons-- first because you don'tabandon the patient. number two, becauseyou don't know that these patients may nothave epileptic seizures as well. and when you're takingthem off medication, boom.

the seizures may come. number three-- becausevery often they have other comorbid conditions,mainly pain and headaches, for which thepsychiatrist may not feel as comfortable in handling. and so those arethe kind of patients in whom you don't identifythe conditions where they stop having the event [inaudible]. and whatever it was that causedthe events in the beginning

is not operantanymore, and that's it. for example, one of theconditions that dr. fisher was alluding to-- theconvulsive syncopy. it's often misdiagnosedas epilepsy. you tell somebodyyou have epilepsy, you're messing up withtheir lives big time. they can't drive. they can't do a lotof these things. and so that in andof itself can become

a self-fulfilling prophecyuntil you do the evaluation, and then that's the end of it. so we should probably be alittle briefer with our answers so we leave time forquestions in the remainder. so just three moreremaining questions. we've talked a lot aboutdiagnosis and giving the diagnosis, andtouched a little bit on the role ofpsychotherapy in treatment. but perhaps dr.barry you could say

some more about the generaltreatment approach for pnes. so we just actuallyfinished a study. it was a three-institutestudy at brown and at university incincinnati looking at different approaches. since the etiology of many ofthese events are depression, we looked at thetreatment of depression alone with medication. we also looked at a groupof patients with cbt, which

is cognitive behavioraltherapy, and a group that was treated with both, and thena treatment as usual group, as bob alluded to before. and actually, thecombined approach-- which is always the case-- withcbt and medication did best. but there is a groupof patients who were treated with medication. and once theirdepression gets better, many of these nonepilepticevents also get better.

so cognitive behavioraltherapy is very useful. i use a psychodynamicapproach, because, again, as i've talkedabout these, i think there's a communication issue. and just as andywas talking about, with people who don't havea specific targeted stress or whatever thatcaused these-- again, they're trying to communicatein a schematic fashion. and if this can beunderstood, these patients

actually do very well. the patients whodo very well are those that have had the disorderfor the least amount of time-- so in other words, patientswho have had them for less than a year or six months. there's a high percentageof those patients who actually will do well. and that's one of thereasons-- and bob alluded to this in the very beginning--is that you try and get

these patients in as soonas possible before this gets to be a part oftheir personality, the way that theyapproach the world. because then it becomes moreand more difficult actually to rectifying it. so the shorter duration oftime that this has actually been a problem-- those patientsactually do quite well. and letting the patientknow that, i think, is actually verycritical too-- that this

is a treatable disorder. and dr. fisher, as aneurologist who follows people with pnes in clinic, what isyour experience with prognosis? i think most of themend up doing well. when i was startingin this business, it was said that theprognosis was something between poor and dismal. but that's becausetheir doctors weren't doing anything for them.

they were just ignoringor abandoning them. so now, if you take a jointcomprehensive approach and you try to address theunderlying causes for the pnes and you treat it, you treatthe depression if it's there, you do cognitive behavioraltherapy if it applies, then the prognosiscan be pretty good. my experience is thatpeople vote with their feet. if they show up fortreatment, they get better. if they don't showup, for some reason,

they don't want to be treated,and they will typically go on having the events. can i just say a statement? i think one of things that whenyou look at the three of us up here, we're uphere for a reason. i'm a psychiatrist. and andy is certified in bothpsychiatry and neurology, and bob obviouslyis a neurologist. this is a very changing time.

and that is, psychiatristsand neurologists-- the way i look at it, i'm very athome working with bob over in the unit more,in many ways, than i am in the psychiatry unit. we work together. we work together all the time. and treating thesepatients is very difficult. i think we've triedto kind of get across the complexity ofthese patients.

many is the timethat i see a patient and i don't know what's goingon, and i'll give bob a call and say, look. i've got this guy. something's goingon here, and i just don't feel comfortable with it. would you put him back in theunit and evaluate him again? because i'm justnot sure about this. you have to able to do that.

and mind-body split,the mind, like in psychiatry, and neurology--that doesn't exist anymore. there is no split. this is an organic problem. descartes did us ahuge disfavor when he talked about mind and body. there's all one--it's an organism. and this is a physical problem. so when we worktogether like this,

the probability of patientsgetting better and getting good care is accentuated. i want to emphasize one thing. the presentationof the diagnosis is pivotal in the patientpursuing treatment. if you don't presentthe diagnosis properly, you're going to make thepatient run away from your unit. [inaudible] anyone who has thisproblem, knows someone

who has this problem,and wants to get help, should go to a comprehensiveepilepsy center. it does take amulti-disciplinary approach. it takes a place that cando video eeg monitoring. if you don't knowhow to find one, look on epilepsy.com or theepilepsy foundation website. those are now conjoinedin the same organization for find an epilepsy center. it's not something that wouldtypically be best handled

in your primary careoffice, unless that person has an unusual skilland experience set. well, i think we ought toclose the questions down now from our moderator,ariela karasov, and we ought to openit to the audience. would you moderate theaudience questions, as well? does anyone have any questions? i'd be interested ifany of the speakers might talk to any significantcross-cultural or sociological

issues related to this disorder. so i live in miami, which is acity next to the united states. that's notcross-cultural anymore. [laugh] but it has veryrich cultural diversity. we have people from thecaribbean, south america. a lot of europeans and asianshave also moved to miami. and i have to tell you that yousee these kind of situations very frequently. in south america, you see itwith an increased frequency

because there are certaincultures in south america where incest is actually anaccepted-- in quotes-- an accepted practice. and so you will see it. i was born and raised in mexico. in mexico, we used tosee that very often when i was doing my internship inthe general hospital of mexico in mexico city. and this was an expressionof a lot of forms of incest.

and it's not only somethingthat you see in mexico. you see it in many countriesin south america, where these kind of practice stop. dr. fisher? in arizona, where i practicedfor a number of years, we had the nativeamerican culture. and the navajos have describedthe hand-trembling attacks, which are highly correlatedwith epileptic seizures, and the moth andflame attacks, which

is like a moth fluttering arounda flame, which they correlate with a nonepileptic seizure. so they use different words,but different cultures see the same phenomenon. other questions? so what percentage of thepopulation has this disorder? 5% of the worldwill have a seizure in their life, maybemore, especially if you count the febrileseizures in children.

nobody knows reallywhat the subset is who have nonepileptic seizures. it is a small percentage ofpeople who have epilepsy. what number when youcome up with, gentlemen? with nonepileptic seizures? nonepileptic seizuresversus epileptic seizures in a population. a study's never been done. i think there was an estimateof 0.4%. [inaudible].

so that would be 4out of 1,000 people with epilepsy would havenonepileptic seizures. but if you go toepilepsy centers, where there's enrichment byreferral, as dr. kanner said, some places will have a thirdto a half of the people referred for epilepsy turning out tohave nonepileptic seizures because the seizureshaven't come under control with traditional medicines. one of the thingswe haven't said

that should be mentioned brieflyis that some of the medicines work both for epilepticand nonepileptic seizures. so a medicine like lamotrigine,which is a seizure medicine, is also a mood-stabilizingmedicine, and would help both. if you're having complicatedmigraines with confusion and you get put on topiramate,an anti-epileptic medication, it's also ananti-headache, a headache preventative medication. so sometimes we can beclever and cover both bets.

in terms of pnes, wouldyou be likely to see a wide variation ofpresentation of the episodes, say, serial episodes? sometimes yes and sometimes no. if we see a widevariation, for me, it makes the diagnosis easier. because seizures are relativelystereotyped, one to another. so if the presentation dependsvery much on the situation and is varied, i'minclined to think, hmm,

maybe this is not anepileptic seizure. but sometimes the pnes canbe very stereotyped as well, or they may have two differenttypes of pnes, each of which is stereotyped of its own way. how much time do we have? one more. one more question. yes. i have a question.

i get the impression thatgps can't recognize this from what you've allspoken about this evening. i live through this. i had uncontrolledseizures for 22 years. and i got lucky one day. i was donatingblood at welch road, and i had a very minor seizurewhile the iv was going in. the doctor on theprem came in-- ok. you're going to the hospitaland having a cat scan.

i ended up being referred to agreat neurologist, [? pam. ?] and then i was medicated, andit wasn't working after a while. and you, dr. fisher,took care of me when i was in thehospital having video eeg. and i had neurosurgeryseven years ago. never had another seizure. but for years, 22years, i'm having complex partial seizures. they're getting worse and worse.

but what's frighteningis i'm driving around woodside in atherton with otherpeople's children, plus my own, and it was really terrifying. i mean, my children still-- if ijust make a sound on the phone. i had my first seizurewhen my third-year-old was four months old. we were talking the other night. she heard me, [gasps]. mom!

it's just like atrauma coming back. because they remember me alwayspulling over the car because in those days, i had an aura. so i could pull the car overand wait for it to be over. but it's really common thatthese people don't know what and they just say, ok. you're having a panic attack. but it's deadly, and i wastold by a neuroscientist at cal that i probably havelots of brain damage

from 22 years ofhaving these seizures regularly, until theybecame life-threatening and i ended up your care. good to see you again. yeah. [laugh] i really want to thank dr.fisher, dr. kanner, and dr. barry for joining all of us,and to thank the audience for being here tonight.