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PNES- NON EPILEPTIC SEIZURES

  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

I'm sorry, but what is PNES?

Diana

Re: PNES- NON EPILEPTIC SEIZURES

I've just learned that my 23 yr. old son was misdiagnosed with epilepsy and actually is afflicted with PNES (Psychogenic NonEpileptic Seizures).

 We were in fact lucky that his regular Dr. was on vacation and he happened to see another Dr. that was willing to delve in deeper as to the cause of my son's seizures.

He's scheduled to see a psychiatrist tomorrow and we are anxious to see what comes of it.

My son has spent years on heavy med's to try to control his seizures but has had to be admitted several times to the emergency room because his seizures weren't responding to the med's.

Hopefully he will now get the proper kind of help that he needs and can move on in his life to bigger and better things.

I'll keep you posted on how it's going.  

Re: PNES- NON EPILEPTIC SEIZURES

For me, just about the opposite occurred. For the first thirty years of my life, all the signs and
symptoms of partial and partial complex epilepsy were blamed on psychological/character problems.
When tinctures of opium didn't alleviate some of my physical symptoms, I was even told that I "willed"
myself to be sick. Once epilepsy is instead labeled as a psychological problem, it is nearly impossible
to discard and break free from whatever DSM-IV code happens to be pasted upon the individual with epilepsy.
I broke free from this psychological trap by avoiding most all doctors until, unfortunately for me,
my epilepsy progressed into major life-threatening tonic-clonics (the doctor has to be really besieged
and careless to label these as psychogenic). AEDs now moderately control my secondary tonic-clonics.

I don't like being labeled as having epilepsy, so I blame many of my signs and symptoms of partials on
migraines now, and this also avoids many aspects of my concerns with "toxic psychiatry," since my partials
don't respond well to AEDs. My partials being intractable to medication can be viewed as a lone clue
to non-eplileptic seizures, but many diagnostic clues must be weighed and judged; diagnostic traps
must also be avoided, and frustrations/economics should have no influence, but frequently do in the
medical sciences.

Postictal Changes in Serum Prolactin elevation levels are virtually 100% for generalized tonic-clonic
seizures, above 80% for Complex partial seizures, somewhat between 10-20% for simple partial seizures,
none for absence, myoclonic, akinetic seizures, none for status epilepticus, and none for Psychogenic
Nonepileptic Seizures. These levels, which psychotropic drugs mess up, with tongue biting, falling and/or
incontinece, eye/eye-lid response are often used to differentiate between true epileptic seizures and
non-epileptic seizures. True and intractable epilepsy invalidates most all psychiatric/psychological
testing, and frustrated psychological professionals can even end up erroneously assigning Munchausen
Syndrome By Proxy as the reason for "purported" seizures.

Two of my favorite books on epilepsy is "The Epilepsies" by C P Panayiotopoulos, copyright 2005,
ISBN 1-904218-34-2; and, "Imitators of Epilepsy" by Kaplan and Fisher, copyright 2005, ISBN 1-888799-83-8.

Re: PNES- NON EPILEPTIC SEIZURES

UPDATE by terter!

I am making an amazing recovery!!! After years of PNES....just finding out that I had them not even too long ago...I nearly have them under control...I say nearly as I am a work in progress!

My therapist and I discovered by trial and error, talking and me keeping a journal, that these are my triggers:

-stress leading to anxiety
-anger
-fear

The above triggers have come from what happened to me during our family battle with Lyme, and now the same triggers for everyday life stressors as well.

Here is what I am doing for PNES...

-I am reaching back bit by bit in my mind to see which doctor did me wrong or treated me terribly or misunderstood me, and I am addressing each issue. For example, I won my second appeal to have my insurance pay for 2 days extra for me before I was diagnosed with PNES..while I was in a rehab/nursing home. I was being discharged suddenly without giving me a reason..I got hysterical as I was not walking or allowed in a wheelchair due to so many seizures....I signed a form saying I would pay for two extra days so I could get a plan together to get home. My insurance company saw that this was lunacy and paid for it! TADA...I am getting some power back as Dr. Phil would say!

-I reported the doctor in that facility for discharging me without giving me a reason, neglecting me as he would not answer any of my calls, and his office people told me I couldn't talk to him at the office as I was NOT a patient...that I should WALK over! Geeze, I was really hysterical then..I told them I was in the nursing home because I could not walk!!! Talk about being furious. Well, they are reported and being looked into by my insurance.

-I forgave a doctor for some of his treatment modalities for Lyme were questionable, as he had Lyme Psychosis and committed suicide.

-I am learning to say...."sorry you feel that way"...and other things as to not invite confrontation from some people. I am learning my emotional limits right now.

What I found out about myself was that if I go over each problem and DO something about it, I feel stronger...not at the mercy of suppressed anxiety! When I first spoke about each incident (I have many awful stories) I had seizures...my therapist saw this, as did I, and we didn't have to be a genius to see the impact doctor abuse had on my psyche!

Keeping a journal of sorts, lets me see where my stressors and anxieties and fear lie. Then we deal with each issue. I try to seperate myself from the pain, and just talk it out. Then I practice relaxation techniques if possible. If not, I try to do purposeful movement like pacing, swinging my leg, slapping my thighs...anything to not have a seizure.

If the above does not work and I have one in therapy...or more, or even have trouble walking....I just wait it out..take a Klonopin...wait and wait and then when I have let off that built up steam of a seizure...I try not to feel defeated, but assure myself as does my therapist, that I AM making tremendous progress.

I went from being totally wheelchair and bed bound, to driving and shopping and gardening...even had a baby shower for my daughter! My husband and I are going to be grandparents for the first time.

It is so liberating and thrilling to know that I have a future filled with promise! It all started with accepting my PNES! Then I knew I had to fight...then I found out that I have to be gentle with myself and learn what the true triggers were, and WHY.

I still have a twitch here and there, or a seizure that lasts a second...longer in therapy sometimes as I feel it is "safe" there...I am so much better and I see such an incredible future ahead as I continue to progress and understand myself.

I hope that I am offering hope to others!

Take care all...I am looking forward to hearing from other PNES people...I feel kind of alone in my neck of the woods!

terter

Re: PNES- NON EPILEPTIC SEIZURES

Hello my name is Jessica,

Let me just start by saying I know what your son must be going through. When I was 16 I was also diagnoised with having epilepsy due to a minnor car acident. For 14 years of my life I believed the doctors diagnosis was correct. But as I got older my seizures tended to get worse and happen more offen then not.   Because of this my doctor kept prescribing new medications or upping my dose. But still nothing was helping, not only was I still having seizures I was also very depressed.  It wasn't until April of 2009 that my wonderful parents and I decided to get more tests done and I was taken to Stanford Medical Hospital.  There I stayed over night for 3 nights and was hooked up to an EEG monitor as well as videographed.  According to the doctors tests I didn't have epilepsy, like your son I was told I have Psycogenic Non-Epileptic Siezures (PNES). This they confirmed by the EEG monitor because every time I thought I was having what I believed to be an epileptic seizure it still never spiked on the machine. Also unlike epileptics I can remember everything that happens when I have a seizure, ask your son if he can, would like to know.  One of the first things the doctors at Stanford told me was that we needed to get all the poison (epileptic meds) out of my body.  At the time I was on 4 different medications including one for depression.  Almost two years have passed since Stanford and I feel so much better for it. Not only I'm I off all that medicine, but I'm also not depressed, and having less seizures.  I still find that stress and anxeity are the biggest things that set it off for me. I hope like me your son will find that just finding out it's not epilepsy is 75% of the cure. Although for people like us we have to work on the other 25% which for me is meditation and breathing exercises, writing my thoughts in a journal, talking and communicating with family about it and trying to meet with a psychiatrist twice a month.  Well I know I probably went way over in talking about this but let your son know there more people then he thinks out there who are going through the exact same thing.  So good luck to you and yours, and may your son's future be siezure free.:) 

Re: PNES- NON EPILEPTIC SEIZURES

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

Re: PNES- NON EPILEPTIC SEIZURES

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_...

"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+independe...

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

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

Hi Terry,

Not very many people have been validly and reliably labeled with PNES. The widest based estimate ranged between 1 person in 50,000 people, to 1 person in 3,000 people. The wide difference in the estimates is probably from the mistake of counting shadow cases multiple times. The higher rate is definitely incorrect, or the numbers would mean that PNES tend to protect people from having epilepsy. The wide estimate is from:

http://www.ncbi.nlm.nih.gov/pubmed/10880289

It must also be remembered that a case of epilepsy has a physical/material existence, while PNES is an abstraction concocted from DSM-IV entries. Lyme disease also has a physical/material existence, while a few diehard professionals still contend it's only an pseudo-science abstraction.

Many reports include citations that incorporated a mis-print of numbers that mistakenly increased the frequency of reported cases of PNES by a factor of 10 also. Problems with the count, and a major actualization of what Shattuck groups as an "Irish Bull", with a denial of the knowledge while making a claim of having the knowledge, was included in an audio interview with one expert at: http://www.blogtalkradio.com/epilepsy/2009/07/13/epilepsycomprofessional...

Reflex seizures are much more common with a diagnostic label of epilepsy (4%-7% among patients diagnosed with epilepsies), than the Benbadis' estimate of 0.4%-3% of that labeled epilepsy but actually only including PNES (non-simultaneous epilepsy and PNES further reduces the percentages of Benbadis' estimate). Reflex seizures are epileptic seizures that can be provoked by certain recognisable stimuli. Behaviour modification can be used to avoid, or minimize exposure, to the recognisable stimuli with reflex seizures, but behaviour modification does not reduce epileptic seizures that arise in a 'spontaneous' unpredictable fashion without detectable precipitating factors. Specific modes of precipitation factors should not be confused with nonspecific factors (e.g., sleeplessness, alchohol or drug withdrawal, or hyperventilation). Behaviour modification may benefit/minimize many nonspecific prodromes and postdromes of epileptic seizures, but not stop the seizure event during itself.

Seizures can also be a neurologic abnormality of late Lyme disease usually developing a year or more after illness onset: http://professionals.epilepsy.com/page/lyme_latedis.html
Seizures from Lyme disease are not PNES. Medicines used to treat the effects of Lyme disease can also cause seizures: http://www.jocmr.org/index.php/JOCMR/article/viewArticle/225/156

Intense and/or frequent seizures of a vast panoply of diseases can cause neurologcal damage, with the resultant damage later resulting in seizures meeting the classification of an epilepsy. Both Lyme disease and nonconvulsive status epilepticus can be "great imitators" of many other diseases: http://books.google.com/books?id=YkRH6cL1ziAC&pg=PA189&dq=epilepsy+Lyme+...

Tadzio

Re: PNES- NON EPILEPTIC SEIZURES

I thank you so much again, for all of your info.

I so hoped that Lyme caused my seizures at the exact time of onset...I was well read in all of the manifestations of this as you said, "very misunderstood disease." I was so hoping that at that time, the symptom was called myoclonus-caused by Lyme...I just can't stress enough the horrors we went through...it definitely was an emotional roller coaster-I remember feeling so frantically worried at the onset. I KNEW I had Lyme and was tested THREE times while the disease continued into neuro Lyme...watching my family go downhill with the same thing. I was so furious at being under treated by my initials docs..telling them so, and then when dismissed on all accounts, having to find yet another doctor.Nearly every doctor I saw was not experienced enough or had Lyme themselves, and didn't always have their own acts together!

The thing is...as I have said, experienced and researched so much now...I know I have PNES...my history was gone over at the U of Penn with a fine toothed comb...my outward appearance with the seizures is so typical of PNES, not to mention the video monitoring and EEGs. I have tried not to have this diagnosis for so long. Now that I have accepted it, I am better already. I feel so free of trying to hide this condition, that I just want to tell everyone who has suffered from this WITH me, that there is hope through therapy and tools to use from therapy, that I will get well. I am not going by posted statistics, but by my own will and willingness to heal. I need to learn how to deal with stress and anxiety in a healthy way, and not to just stuff it. I am finding myself to be more assertive and decisive with everyone, which is freeing!

I am on a good path. The past few days I have woken up not feeling like my body is buzzing inside. The Klonopin does help. Tomorrow I have therapy again, and will most likely learn the rest of the TFT. I have had two mini panic attacks out of nowhere, but was able to deep breathe,do the three first steps in Touch Field therapy that I know..and tell myself that this will be over in a minute. I kept trying so hard to gain control. That is the worst part of this entire thing...feeling so out of control, and wanting to control "it"...I am so much more in touch with my mind/body connection that somehow at times it hurts worse...knowing that I have a long way to go, as I watch my own thrashing.

I am really surprised at the differences between the incidence of PNES. At the U of Penn hospital, my neuro and another neuro said that the incidence is high, and not diagnosed soon enough in most people. They said about 25 % of their patients at the Epilepsy center have this disorder. This is at one of the top 10 hospitals in the country. I said to my family when I was going to go there..."This is my last stop shopping for a diagnosis. I will accept the diagnosis and then find my road to recovery". My family is happy that I HAVE accepted what they all said that they knew I had. Everyone seems to feel that the stressor was Lyme, as they lived it too. If it was something else, like my husband being burned, to me the treatment would be the same....me learning to deal with stress and anxiety and fears constructively, eventually learning to control these seizures.

Keep up the posting to me...I really appreciate your every word. I also wish that some other people would see our posting back and forth, and tell their stories and add their comments. It would mean the world to me. We all need to give each other hope and share our stories and the techniques we are learning and using to deal with this brutal condition.

EIGHTEEN years of this is eighteen years too many.
With deep appreciation-Terry

Re: PNES- NON EPILEPTIC SEIZURES

Hi Terry,

In trying to tolerate my intractable partial seizures (Keppra stops my secondarily generalized tonic-clonic seizures very well for 2 years now), I researched alternative treatments like Acceptance and Commitment Therapy (ACT), and I was skeptical because the reported "success" in living with epilepsy was well above 90%. Most valid and objective verification techniques of strong results are about one-and-a-half standard deviations from chance results at best, and results better than that is evidence of something too good to be true without very strong, controlled, and independently verified tests and results.

Did the neuros, or their representatives, at the U of Penn hospital recommend TFT? My studies with the MMPI with patients at Mental Health Clinics, made me wonder about the validity and objectivity of the DSM bible. I'm therefore very skeptical of the claimed frequency of PNES (and many psychiatrists are too), and there seems to be somewhat of a conflict of which branch of health services takes responsibility for the health care for regarded PNES patients, and this non-Hippocratic stance seems to be curtained with regarding what's cynically labeled "fashionable" in this and that schools' expert versus expert conflicts.

I searched for references on TFT, and found TFT as "Thought Field Therapy" and as the "Touch Field Therapy". And as some independent references to ACT weren't very supportive of ACT meeting CBT standards in controlled trials, both the first TFT and second TFT were "rejected" as being at best "controversial":

http://www.skepdic.com/thoughtfield.html

http://books.google.com/books?id=nMh_N8QRLPoC&pg=PT22&dq=%22Touch+Field+...

In another neurological subject, I also wonder about the latest failed Alzheimer's research tests, yet the expanded criteria are being pushed forward despite the contrary evidence.

Tadzio

Re: PNES- NON EPILEPTIC SEIZURES

Hi again Tadzio!

I, too, have done a bit of research on the validity of TFT therapy in the field of Psychology. Many professionals find this to be just a farce. Now what I do know is that since my seizures began immediately when I was the most anxious and beyond upset...to the point of just feeling hysterical inside. Since then I have also had a few panic attacks, difficulty walking with a total resolution of it, and then being able to actually run after a short 5 minute recovery. I see clearly now that my seizures/anxiety condition are directly related.

To me, anything that is calming, soothing, and helps me to get into that zone of relaxation is worth putting my all into. My mind has told me that I have sensory triggers that lead me to an aura, leading to the inevitable seizure. I keep telling myself that I no longer have triggers, that this is something that evolved over time that is not true.

The other day I went to therapy and told my therapist that I want to continue to learn TFT. I knew the controversy and just decided that since there is always a brain/body connection, that I will use anything I can to re-train my brain into not perceiving sensory stimulation as a trigger. We began the TFT. I had a seizure with all of the tapping. OK. I told my therapist that tapping on my body...ie sensory physical stim. was a trigger, and I know that I can desensitize myself, as I have done with that terrible skunk smell we all know, that caused me to have seizures for years. There are so many skunks near us, that after having so many seizures from their pungent odor, that I eventually stopped having seizures from strong obnoxious odors!

I kept telling myself during this therapy that tapping does not cause seizures, that tapping will help me to learn to heal myself...no matter what. After trying over and over and having 2 more seizures, or myoclonus....I got down to a twitch. PROGRESS! I did the TFT today about 6 times and had NO SEIZURE from that sensory stim. After doing TFT...we went into some meditation...very deep breathing...the old..your feet feel heavy...your knees...all body parts..etc. When she went to my heart feels relaxed, I started to tear up. I have to work on that precious heart of mine. I am so used to it pounding with anxiety that it was hard to relax that part. We started again until I had no seizures, no twitching and no anxiety at all. I was so relaxed that I could barely walk!

This was the day before yesterday. Yesterday I had NO seizures. So far today I have not had any...we even went to a viewing yesterday where I saw old friends. I told them my diagnosis...showed them the stone that I keep with me to hold and rub...and use to transfer my rocking and other self soothing behaviors to. We laughed and then I had them hold my stone...I said...whatever works! Come to find out, I talked with 3 women. ALL of them have anxiety problems...an obstetrics nurse, and two other professional women. We spoke in detail and depth about our struggles for really the first time. It was freeing for all of us. I mentioned the TFT therapy and they are going to look it up.

I am going to be open to anything that is a tool to help me to help myself. This is a non-medicating technique and does no harm. It helps me to relax. If it is just the power of suggestion, or a distraction technique, or works like acupressure...does it really matter? What matters to me is results and belief in getting well. It is very empowering to have tools! I have decided to focus only on what works for me, and to just forget about anyone's statistics or what the medical field as a whole thinks about this technique. I worked in the medical field, and found that talking, listening and touch is an incredible healer. I am also praying-known to be beneficial for sure....medically and spiritually.

My therapist asked me what is GOOD about the seizures for me? At first I said...NOTHING...I just want to get rid of these seizures I have had for over 18 years! Then I really thought.....it is a HUGE relief after I have them. Why? My aura is a huge build up of feeling...negative feeling..like impending doom. When feeling so incredibly tired after a seizure, it ends up being so relaxing...I just want to rest and be quiet...well, isn't that what I NEED? I am seeing very quickly the connection inside me, and my body crying out for relief.

I am very tuned in to my body and mind connection now. I always thought I was, but with this disorder, I found that I was fooling myself. Talking and having tools is opening those tough doors of truth.

What do you think about all of this? terter

Re: PNES- NON EPILEPTIC SEIZURES

PS! I forget to answer your question as to what therapy U of Penn suggested for me after my diagnosis of PNES. At first my neuro wanted me to come right to Penn to see someone. Driving from Cape May County NJ to Philly used to be a breeze...it wouldn't be right now...so she wanted me to see a therapist near my home that my insurance covers. We talked about a few types of therapy, and I told her that I thought I would respond the best to a structured type of therapy like Cognitve...ummm I forget right now...but there was no one in my area.I also think that my neuro mentioned a group which I thought was out of the Epilepsy Center there that I went to. I will have to check into it. Wouldn't that be incredible! Later I can go! Hopefully I was hearing her correctly!

I found my therapist by calling ones on my provider list, and telling each one what I have, explaining my symptoms and needs...saying it was a deep seated psych trauma that presented itself as seizures that are not epileptic, but psychogenic. I was referred to my therapist now, who treats among other things, PTSD patients, which is what I feel in a way that I have.

Today I burst into sobs seemingly out of nowhere while watching TV. A cat died in the program...geeze...I do feel fragile as I am allowing myself to let out all emotions. I recovered and went outside since last season, and pulled some weeds...it felt so wonderful, as I couldn't even walk in December! I feel like I am gaining freedom one step at a time. terter

Re: PNES- NON EPILEPTIC SEIZURES

PS! I forget to answer your question as to what therapy U of Penn suggested for me after my diagnosis of PNES. At first my neuro wanted me to come right to Penn to see someone. Driving from Cape May County NJ to Philly used to be a breeze...it wouldn't be right now...so she wanted me to see a therapist near my home that my insurance covers. We talked about a few types of therapy, and I told her that I thought I would respond the best to a structured type of therapy like Cognitve...ummm I forget right now...but there was no one in my area.I also think that my neuro mentioned a group!! I will have to check into it. Wouldn't that be incredible! Later I can go!Hopefully I was hearing her correctly!

I found my therapist by calling ones on my provider list, and telling each one what I have, explaining my symptoms and needs...saying it was a deep seated psych trauma that presented itself as seizures that are not epileptic, but psychogenic. I was referred to my therapist now, who treats among other things, PTSD patients, which is what I feel in a way that I have.

Today I burst into sobs seemingly out of nowhere while watching TV. A cat died in the program...geeze...I do feel fragile as I am allowing myself to let out all emotions. I recovered and went outside and pulled some weeds...it felt so wonderful, as I couldn't even walk in December! I feel like I am gaining freedom one step at a time. I am looking forward to having Easter dinner at my son's house tomorrow...no stress for me having to have it here..I am cooking food to take...so nice.. terter

Re: PNES- NON EPILEPTIC SEIZURES

Hi Terry,

In the last 30 to 40 years, I've tried all kinds of techniques to eliminate, stop, control, "trigger", my about monthly clusters of seizures. Neither relaxation nor stimulation techniques worked for me, but there is plenty of neurological literature that contends that many such techniques often work, especially with the seizures from the reflex epilepsies. My epilepsy seems to be totally distinct from any categorization of having reflex seizures. The clusters give me the most warning as I go to sleep, and I can somwhat delay them for a few hours by staying awake and alert. My daily random simple partial seizures don't respond in frequency to anything, including all the AEDs I've tried, but most of these seizures have been ecstatic seizures the last few years, with post-ictal negative emotions that often do respond to limbic "opposing-side" conditioning, maybe like the left-side versus right-side Limbic System crossover briefly described at: http://shaktitechnology.com/shiva/God%20Helmet/koren_principles.htm

I think I've learned some different verbal behaviours that "bypass" a few of my older verbal behaviours that were disrupted by epileptic seizures, but this is much different than controlling the seizures (it is as if learning to write with my left hand after I lose the use of my right hand). The problem with seizures is still there (and with possible kindling, still enlarging), but I do things in a different manner to work around the seizures (there are examples where some bilingual people can still speak in the other language, even when an epileptic seizure stops speech in one language). If many kindling theories are true, the success of learning to minimize the behavioural effects of epileptic seizures by bypassing the focal point of the seizure through conditioning, is a benefit with a possible high neurological cost in the long term.

I've always received negative feedback from other people and professionals for "doing things in a different manner", even when this difference resulted in the best test scores at university and employment exams. Some mentions of actively stopping reflex seizures are at:

http://www.ncbi.nlm.nih.gov/pubmed/2494042

http://www.ncbi.nlm.nih.gov/pubmed/7923453

I tend to agree more with Peter Breggin's philosophy in his book "Toxic Psychiatry" about Mental Health issues generally. Still, I question many therapies (from Cognitive Behavioral Therapy to things like "tough love", Synanon, and more "religious" leaning therapies), but I'm probably biased by my own church experiences from "speaking in tongues" from seizures in youth, to by brushes with religious leaders, and my luck of the draw avoidance of The People's Temple tragedy. In Santa Cruz County California, various churches were close to directly promoting many alternative medicine therapies (from herbal tea diets to programs like Reflexology, and many, many, more). My being on Medicaid quickly shied away the promoters during the earliest encounters, and many of the remaining "programs" had characteristics of pyramid schemes that soon demanded money with promised returns. Epilepsy versus PNES with health insurance issues seem to involve secondary money issues more than health issues too (here in California, neither camp wants beyond token Medicaid patients). A near zero Carbohydrate diet (much like a very strict Dr. Atkin's diet) came the closest to minimizing the strength of my seizures to nearly unnoticeable or devoid levels, but the expense, and nearly impossibility of avoiding instances of hypoglycemia (with symptoms much like a different type of seizures), made the diet impracticable over long periods.

With my ecstatic seizures being so much like those assigned by Dostoevsky to Prince Myshkin, I prefer the Skinnerian part as science, and I weight the spiritual parts more significant than the failed measurements (the rocks crumble to dust, when applied to TLE) through the pseudo-sciences of psychology and other social sciences more inspired by Auguste Comte's Godly intellectual atheists seeking predetermined freedom as a science with measures of randomness. (I've studied too much social science with things like SPSS, and the MMPI versus Dr. Donald Dork:
http://books.google.com/books?id=rwpHAAAAMAAJ&dq=editions%3AeAdbEn-yZbcC...
Amazon-dot-com has the newer edition of "Research Methods For Social Work" by Allen Rubin and Earl R. Babbie (2010), and the pages following the entries for the "MMPI" search results, return the preview around pages 198-205 giving an "other inverse view" of commonsense validities (the 3 questions re paranoia on page 200 most always get a snort or a laugh)).

My doctors tend to call my migraines epileptic seizures, while ER tends to call my seizures migraines, and I want to call them whatever best works for my health (there's seems to be much less bias with the label "migraines" than the label "epilepsy", and in non-medical environments this is a benefit, but in a medical situation where reducing expense is top priority and/or dumping patients, it is a drawback). So, if I can judge the longer term consequences of available choices of various labels, I try to go with the label that benefits my health the most. The labels themselves are much like library reference systems. Literature, nor science, changes with a simple change in reference numbers (true-believers in hard-core number labels might yell that the sky is falling!!!).

Tadzio

Re: PNES- NON EPILEPTIC SEIZURES

i do. i have suffered from pnes for the past 4 years. dr's are still looking into the fact i have epi on top though as i have not been responding to therapy and ant-depressive meds and since ive been on anti-epi drugs im almost 2 months of not having a seizure....

 

i get mine from sever stress. i know its more common in adolescent women. pnes is dangerous physically because if someone falls during a seizures, it's same danger as those with epi. but pnes just means the electrical activity in brain stays normal and means he might have this as there is some stress or anxiety that needs to be dealt with. it's good in some ways as it may mean he may get to a point where he will not longer have seizures all together.... other ways some people i know are dihearted by this diagnosis and it may be scarey as some people have asked me that does pnes mean im faking them!

 

i hope lots of love to your son that everything may start getting better x

 

 

Re: PNES- NON EPILEPTIC SEIZURES

it may be they can not find any abnormal activity.  it may be other factors, i am sure there is more information, some that you are not aware of, or things the docs have not found yet.  sometimes the direct source of seizures is difficult to find.  they may keep trying different meds.  there is really  no draw in the line definite diagnosis of pnes.  i hope they find out the why, and a successful treatment,  more i hope that they find a successful treatment.  hope it helps.  rikk

Re: PNES- NON EPILEPTIC SEIZURES

I mentioned this in another area -- but there is a WONDERFUL article in NEUROLOGY NOW (Nov/Dec 2008) "The Seizures No One Wants to Talk About"  -- My daughter diagnosed with this (along with Epilepsy because of brain damage with spinal meningitis at age 5 months -- she is now 45) It is DEFINITELY a real issue -- and I too was wondering if others out there with this.  The only way it can be diagnosed is through seizure monitoring (continuous video-EEG monitoring).  My daughter had about 35 seizures the week she was monitored and 30 of them showed NO change in brain waves and we could see her having the seizures.  I was amazed!   

Re: PNES- NON EPILEPTIC SEIZURES

I have been reading about PNES, I have been dealing with seizuers for over 4 months now, I have been through MRI's EEG's and Video with EEG, and they said it was a non eptilepitc event, gave me some anit depressents and said bye bye and sent me back to my regular doctor.  He said he had no idea what to do my test came back ok the blood pressure was holding ok, no blocked arterys no epilepsy, no tumors nothing, so he didnt know, but want you to keep taking the  topiramate to control the seizures and go ahead and seek out another doctor who might know something. I have read  about PNES and it seems to speak alot towards  my events  I called and asked for a referal to a doctor at the university hospital but no calls back as of yet, now part of this is I am not allowed to work because of the seizures but the doctor doesnt seem to find anything wrong, the other doctor left his practice, the other doctor hasnt returned calls, some of my family members seem to think I am just playing games and others are worried and I cant seem to find out what is wrong with me, I know something is wrong, and I cant get anyone to notice or something. I have one month left of sick leave and I loose my job if I cant return to work, I cant get my medical retirement because the doctor doesnt know  what is wrong and doesnt know what to say to them, the siezures happen when ever they feel like it, I cant drive because I dont know when they will happen.

Re: PNES- NON EPILEPTIC SEIZURES

http://professionals.epilepsy.com/page/ar_1116430870.html

Go to this link, my husband has PTSD from 3 tours in combat and his treatment is valium and psychiatry etc.

Re: PNES- NON EPILEPTIC SEIZURES

Hello

My name is Kris and I have had PNES since the age of 15.  Yes it is really difficult not to be able to work or especially drive.  I as well have family who feel I am Faking these events.  I have them often and they appear epileptic but my brain wave has not changed during them.  I like my current doctor at Lehay Clinc in Burlington.  Ritu Baggla is her name.  Does anyone know how to find a mental health clinician who has experience in PNES? 

 

Thank You

Kris

Re: PNES- NON EPILEPTIC SEIZURES

I live with PNES. Though i just figured that out looking at your web page right here. So i don't have alot to offer you. Just know that your not alone.

Re: PNES- NON EPILEPTIC SEIZURES

I am writing for my wife who was recently diagnosed with PNES. She began having seizures/episodes/events in december of 2007 after a very bad reaction to the drug seroquel. She was post back surgery when this occured.

My wife has contractions in her abdomen, curling toes, pain in one or both knees and intermittent pain in her neck. She has four (4) of these every day. The only thing that seems to help is percocet, but that is an unacceptable treatment and we want to be free of that as well. But when the medical community offers no relief you use what works.

She was given a video monitored EEG on the 10th of August. In a twelve hour period she had 12 seizures. She is in a state of continuous discomfort and is usually worn down by these events. As some or all of you are aware this 'thing' takes over your life. Couple that with a medical community that has limited knowledge or experience with this condition leaves one at times feeling desperate.

In addition she has the sleep disorder NARCOLEPSY which I have recently learned is common in those who have a seizure disorder.

We are in the process of moving closer to family and a new set of doctors. Perhaps these new 'eyes' will offer more hope. Up to this point most medical people do not understand this malady and therefore do not want anything to do with it.

We are looking for those individuals and families who are living with the same condition. The purpose being mutual support and sharing of experiences.

My wife and I are in our late sixties.

Re: PNES- NON EPILEPTIC SEIZURES

Hello,

I am going through this with my mother right now...It is vert frushtrating to me...I really think a lot of her problems were just simply drama, needing attention?? Wasn't sure and still not sure. The drs. can not seem to figure out what is wrong with her. Every time she is set to go to have an MRI or EEG she has an "Episode" and she is diverted to the ER via my dad. So, in saying that...I did some research and found PNES, the symptoms fit her to a tee. I brought this info to her attention and you would have thought I was calling her a liar...oh my goodness..how does one try to help someone when they don't want to help themselves?? She has a list of medical problems that now I am not sure are even factual?? Fibromyalgia, Perrifrial Neuropothy, Depression, COPRD, Asthma...ect. But, when she is alone or center of attention, her problems are under control...when she is not and then she studders, muscle twitches, bad head aches, looks confused...is this real or is she just an attention seeker?

 

Thanks,

Heather

Re: PNES- NON EPILEPTIC SEIZURES

Hi Heather,

True and intractable epilepsy invalidates most all psychiatric/psychological testing, and frustrated neurological and psychological professionals can even end up erroneously assigning Munchausen Syndrome By Proxy as the reason for "purported" seizures.
(Hint: PNES and the DSM are about like hanging fly paper on a gusty, windy, day).

Tadzio