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PNES- NON EPILEPTIC SEIZURES

Wed, 11/12/2008 - 17:45
  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 Wed, 2011-04-20 - 03:33
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/epilepsycomprofessionals-hallway-conversations-interview-with-dr-selim-benbadis 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+seizures&hl=en&ei=AQitTaWjCof6swOModDeCQ&sa=X&oi=book_result&ct=result&resnum=3&ved=0CDoQ6AEwAjgU#v=snippet&q=lupus%20Lyme&f=false Tadzio

Re: PNES- NON EPILEPTIC SEIZURES

Submitted by terter on Wed, 2011-04-20 - 09:54
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

Submitted by 3Hours2Live on Fri, 2011-04-22 - 04:57
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+Therapy%22&hl=en&ei=HQywTYWRHIu-sQP6-6zaCw&sa=X&oi=book_result&ct=result&resnum=1&sqi=2&ved=0CD4Q6AEwAA#v=onepage&q=%22Touch%20Field%20Therapy%22&f=false 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

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