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PNES- NON EPILEPTIC SEIZURES
Wed, 11/12/2008 - 17:45Topic: Epilepsy.com Help
Hello there. I just wanted to know if there is anyone that is living with pnes... My sister has been told she has this and it is very confusing. I have done some research on this condition..but would like to hear from anyone who has this. I just have some questions about his condition.. right now my sister is in the hospital and i amjust trying to gain a better understanding for her and us.. Thank you..edie
Comments
Re: PNES- NON EPILEPTIC SEIZURES
Submitted by 3Hours2Live on Sun, 2011-04-17 - 20:01
Hi Terry,
The first references I thought of today when I read your posting on PNES (Psychogenic Non-Epileptic Seizures) include:
"The differential diagnosis of epilepsy: A critical review" by S. Benbadis, Epilepsy & Behavior 15 (2009) 15–21.usually available at: http://www.epilepsyfoundation.org/epilepsyusa/yebeh/upload/Differential_diagnosis_of_epilepsy.pdf
"USING PROVOCATIVE TESTS TO DIAGNOSE PSYCHOGENIC NON-EPILEPTIC SEIZURES TWO POINTS OF VIEW: MEDICAL AND ETHICAL"
available at: http://professionals.epilepsy.com/page/hallway_provocative_tests.html
and the "PEARLS & PERILS" citation I came across this morning as "Simple partial seizures usually do not have an EEG correlate. Do not be misled when the EEG is normal during a simple partial seizure." "Adult Neurology" by Jody Corey-Bloom (2005), page 209;"Clinical Adult Neurology", (2009) page 230.
usually a preview available at: http://books.google.com/books?id=KDpsq6CWCV4C&pg=PA26&dq=Focal+independent+spikes+and+sharp+waves+over+bilateral+fronto-central+regions&hl=en&ei=9bOqTdKYEpT2swPi--D5DA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CC4Q6AEwAA#v=snippet&q=misled&f=false
A major problem is the common denial and/or exploitation by neurologists and neuropsychiatrists that epileptic seizures "train" people, both the observers and the patients. IMO, involving this "training", the observer being a neurologist or neuropsychiatrist doesn't help much, and I base my opinion on the book "Gates and Rowan's Nonepileptic Seizures" by Steven C. Schachter (Editor) & W. Curt LaFrance Jr (Editor) (2009), and the use of the concept of an "operant". The preview of this book counts 12 usages of the word "operant", but returns a count of zero for "Skinner", the "radical" behaviourist who coined the term "operant" in the 1930's. "Conditioning" gives 11 results, while "Benbadis" gives 38 results.
A moderately simple example from the book "Gates and Rowan's Nonepileptic Seizures" is on page 270 (preview often available at amazon-dot-com), where a reflex epilepsy "triggered" by flickering light results in fairly happenstance conditioning, such as resulting in the conditioned avoidance of refrigerators. While the undue "avoidance of refrigerators" from a reflex epilepsy, with possibly only simple partial seizures, is far from being any "Mental Disorder", the possible intense difficulty in suspecting and verifying the presence of the simple partial seizures greatly increases the chances of such behaviour being regarded as a Mental Disorder, instead of a consequence of epilepsy. For the sake of simplicity maybe, this example ignores the fact that subsequent "triggered" seizures do not have to result for the lasting effects of classical and operant conditioning to be maintained. Also, in cases of non-reflex epilepsies, mere coincidence of environmental stimuli sets can result in such conditioning from epileptic seizures. Once the patterned conditioned behaviour set is established from epileptic seizures, the conditioned behaviour will often be repeated with very minor "cues" from the environment, and not necessarily include epileptic seizures during every repetition. One of my favorite examples of a more complex set of behaviours, is during a suspect instance of a "PNES" seizure, is the "bicycling" of the legs without any simultaneous Video-EEG evidence of epileptic seizure activity. Since a cue from an undetectable simple partial seizure could "trigger" such a complex set of conditioned behaviours (without necessarily expanding into a larger seizure), contending that zero collaborative Video-EEG evidence substantiates a case of PNES, is careless and dangerous balderdash from an epileptologist.
Many professionals have labeled the diagnosis of PNES as "fashionable", while Dr. Benbadis cites Lyme disease as amongst the "fashionable" diagnoses (Ibid. Benbadis, page 16, first column, second item). While the experts are arguing fashion, are they practicing much science???
The long term problems with decades of untreated simple partial seizures for me, are the kindling to secondarily generalized tonic-clonic seizures having become all too real, and the Geschwind Syndrome, with spectres of "Forced Normalization" with so far elusive total control.
Tadzio
Re: PNES- NON EPILEPTIC SEIZURES
Submitted by terter on Mon, 2011-04-18 - 10:01
Thank you so much for all of your info, and the time that you took for me.
Right now I somehow made this entire website info appear so small on my computer, that I have to copy and paste to Microsoft word to even see what you wrote! I hit the Ctrl and some other key to indicate my multiple interests on...about me...or some other intro to this site. I can't fix it right now, so I can barely read what you wrote to answer directly...so frustrating.
What I do remember are the books and references that you gave me. The doctor that diagnosed me with Partial Complex seizures initially was not as competent nor very knowledgeable...he was a last resort internist that my neuro of 10 years brought into a hospital that I was in for that entire month...taking a few days here and there to try rehab for my terrible deconditioned state sue to so many seizures and being stuck in the hospital bed for so long. I fell out of wheelchairs having these seizures in rehab, or had so many seizures there that I was not a rehab candidate to learn to walk again, or to rebuild my strength. When I got home OUT of the hospital environment, I had rehab at home...when I had an aura, I could get to a safe place. My seizures decreased significantly.
What really made me realize that the PNES diagnosis I received oh so many years ago was probably true, was that my medication was not working..Vimpat, Topamax, Lamictal...with my Klonopin. One day I had 30 plus seizures. I exhibit all of the "typical" PNES symptoms in every respect...once I found that out, I tried so hard to NOT look like that diagnosis...tried to keep my eyes open during a seizure....tried to have or not to have one on my own...impossible. I had an EEG after not having one for so long...negative..had the usual flashing light seizure, and the hyperventilating one, as well as a stress seizure....NO changes emerged on the EEG, I was admitted to the Epilepsy Monitoring Unit and had so many seizures, I believe, because I had so much stress there...I was being watched...and stress because I knew in my heart I had PNES...all of which made the situation worse. It was terrible to be thrashing around in my typical fashion...no bicycling legs!...but head turning to the right always...hard to keep eyes open..some back arching which I tried so hard not to do...arms and legs flailing and myoclonic jerking alwasys of my left shoulder. PLUS, I was suddenly dropped from Vimpat with a close eye kept on me, and 2 extra days in the hospital under constant care.
I have no doubt that this is PNES. I am so frustrated and got upset this weekend as I had even the day before yesterday, about 5 little seizures...they are less frequent and shorter as is usually the case after diagnosis...I had only had about 4 little ones since being discharged prior to the succession mentioned. I was in tears with frustration that this is a deep seated condition, and no matter how much I try to not have any twitches or myoclonus or seizures...right now they are sort of in control of me. Last night I started to have two...and each time tugged on the right and left side of my head at my hair for a second...kind of using the Touch Field Therapy sort of philosophy...it stopped them from continuing. This makes me hopeful that I am so open to healing, and eager to learn all of the steps with TFT so at least I will have ONE tool. I also have a "feely" stone that I picked up in my driveway to help with stress....instead of finding myself shaking and rubbing my feet together, rocking, etc.-which I interpret as self soothing behaviors from my internalized anxiety...it seems to re-channel it if I concentrate on rubbing the stone or turning it over and over in my hand....as long as I don't start doing it in tandem with my feet!!
I know I am off to a good start with my attitude and research on PNES, in conjunction with my therapist, and again, my faith.
I appreciate all of your input...I would love to get ahold of some books..one in particular that you mentioned...I am also so surprised at all of the people that are NOT familiar with this condition! It has been known for so long. What did shock me was that on an old episode of HOUSE the other day..."he" mentioned the condition as a possible cause for a woman's "seizures"...not by name, but by testing descriptions and referring that the condition might be psych seizures in a woman on the episode. It got me upset to see it so downplayed...but the sarcastic HOUSE was in true character!
I would like to see this condition more out in the open in society..aka TV, newspapers...etc. as apparently so many people suffer from it, or have it and are misdiagnosed.
Oh this post is so long, but I just finally feel that I can say what I want here, brainstorm, read about others and have a home base of sorts to come to. Thanks for being here. I am dying to read more stories from others, and hope that I will meet more people here.
I can't even really explore the site, as I had said in the beginning, I made everything so small here, that I can barely read anything. I cannot drag the page at the corner and make the site larger...etc. Thanks again for your invaluable info, and for listening...Terry
Re: PNES- NON EPILEPTIC SEIZURES
Submitted by terter on Sun, 2011-04-17 - 14:36
I am looking for someone here who wants to post back and forth about PNES. I was diagnosed years ago, but refused to accept the diagnosis until LAST WEEK! I was at the U of Penn in Philly. I am so ready to begin healing. I feel empowered just by accepting this as my true diagnosis. I thought that the diagnosis of partial complex seizures that I was diagnosed with in a month long hospital stay prior to U of P, was actually validating that I did indeed have "real" seizures, and was actually happy at that time to have seizures that had a physiological base rather than a psych one! I have been having these seizures for over 18 years beginning exactly when I was diagnosed with Lyme Disease. Right now I am 53 years old. My 2 daughters and my mother and sister also had Lyme at the same time. I found this so upsetting as I was nearly disabled right away with neuro Lyme, and had so many cognitive problems...ie-couldn't do any math, had horrific short term memory loss, got lost in my own house....and had hallucinations...all of the physical problems I had-bone joint and muscle pain..and too many things to mention that is getting me a bit off track! My daughters were in terrible shape, my Mom actually took a leave of absence from her job to take care of us, as my husband was a disaster....and just couldn't cope with the severity of the situation as he worked as much as he could so that he didn't have to deal with what he could not help in the least. I was so filled with stress...going to doctors in three states, not able to help my 5 year old, let alone 12 year old with their homework as I couldn't even understand it. Both of them developed learning problems because of neuro Lyme, but thankfully gradually recovered over the years.They had so many problems from Lyme too, that I just thought I would totally lose my mind over worry, frustration with the medical community's lack of understanding and treatment of this disease; horrific anxiety as to what symptoms would attack us next, and so much guilt over just about anything as I was declining so much in health that I could not be the mother I wanted to be to my son and girls. I was in and out of a wheelchair for 5 years then as well_ I could run one moment, and then not even walk the next..my neuro system was going haywire. I felt like a failure in most respects, but tried to carry on the best I could. I was sexually harassed by one doctor...another doctor of ours killed himself from his Lyme induced psychosis...the stories are those of mental torture for anyone. We were in and out of hospitals, on and off IV antibiotics that we administered ourselves...coped with infections, new problems cropping up all over our bodies all of the time, with me not knowing if I was going to die from one of my serious problems and leave my sick children with my distraught husband and sick mother and sister.I used to work in Occupational Therapy, but had to quit right before my diagnosis as I could barely walk or think straight. No wonder I have PNES....this is the trauma I had when my seizures first started! It is either this trauma, or the seizures started then, with an older trauma of my husband being critically burned when I was 7 months pregnant with my son. I am weaned off of 3 anti-seizure drugs, and am still on Klonopin-I have been on this since I was first diagnosed with Lyme..over 18 years ago...thank goodness for that, now. I was told to seek therapy within two weeks. I was so excited to have something that I can recover from, and so anxious to get therapy, that I had TWO sessions last week alone. My therapist is teaching me Touch Field therapy or TFT that is used with post traumatic stress patients with good results. I am very encouraged to have something to put my all into, but so upset when I have seizures; knowing that I absolutely cannot control them right now, but knowing that they are from a severe anxiety condition.It is so amazing how much clearer my thinking is now that I am off the seizure meds! My FAITH has always held me together, and I am thankful to God for opening my eyes to the truth. I need a friend! Terry