What unites patients with PNES into a single category? The fact that they have abnormal behaviors and changes in consciousness that resemble an epileptic seizure, but that are in fact non-epileptic as per EEG? However, right about there is where the similarity ends.
To bunch all of PNES patients into one bag and hope to treat them without considering intra-group and individual differences makes about as much sense as bunching together a group with the flu and another with extreme sunburn together because both groups are running a fever.
The question we wanted answered this year was: Are patients diagnosed with psychogenic non-epileptic seizures and PTSD the same as other patients with PNES? We found some important differences that we reported in an article (http://www.sciencedirect.com/science/article/pii/S1525505013001819). In our sample of 61 patients with PNES, 45 had suffered psychological trauma in the past and 14 had PTSD. When we compared the group with PNES/PTSD to others who suffered trauma but did not develop PTSD, we found the first group was sicker (prescribed more antipsychotic medication, had a higher incidence of depression/bipolar diagnoses, more suicide attempts, were more depressed and demoralized, etc. than the ones who were not diagnosed with PTSD).
In a follow-up study we compared patients on memory, language, and executive thinking: one group diagnosed with PNES/PTSD to those diagnosed with PNES and who denied any traumatic history.
Our hypothesis was that those with a diagnosis of PNES and PTSD would be different. This mini-study will be presented in a poster session in December at the American Epilepsy Society meeting.
We found the ones with PTSD differed significantly from the non-traumatized ones on a test of story-memory. This coincides with many studies of PTSD patients that report significant problems with verbal memory in this group. It helps us see that PNES/PTSD are different on a number of levels.
These results are encouraging because they are helping us discover subgroups within the “PNES bag” and with this information we can decide to provide empirically-validated treatment (e.g. prolonged exposure treatment) for this group of patients rather than offering just a non-specific treatment for all.
I found your website doing a general nonepileptic google search for 2013 as I usually do occasionally to keep up with the latest research efforts being made about seizures. I was diagnosed with Epilepsy in 1995 and treated with seizure medications. I was still having seizures no matter the dose, drugs or prescribed treatment about once every 6 months. My neuro sent me to an Epilepsy Monitoring Unit and after 3 days there I still had no EEG activity of a true brain seizure and I could not take the long stay away from home and the expense it was on our insurance. Once I told them I was a sexual child abuse survivor t o my neuro & this facility; it changed everything toward their treatment and understanding of my symptoms and those who have witnessed my seizures were even discredited because they heard the words, “trauma survivor”. It literally medically changed everything including their verbal tones toward me. In 2012, because of this Epilepsy Monitoring Unit – I was advised I had PNES. I was diagnosed in 2005 with PTSD from surviving the traumatic childhood that consisted of sexual abuse of Incest and Ritual Abuse. In 2012, I also became diagnosed with Bipolar. I find your article interesting to say the least. I do believe that PNES should be ruled out as the last diagnosis given until all medical measures have been exhausted first of chemical imbalances and blood testing in the body, brain and all major systems are checked for functioning before PNES is given. I personally feel that a PNES diagnosis is the easy way to say – “Oh, you were traumatized and this is what done it, sorry we can not help you”. That’s how they made me feel & many other survivors I know who have seizures that were “misdiagnosed” as having epilepsy and as soon as they revealed child abuse – it was a PNES diagnosis and they can’t help you. The Veteran’s Administration hospital has helped me more than anything to learn about PTSD & seizures in Veterans and the efforts the VA is doing to help Veterans with seizures including advanced researching and testing. The brain is speculated to become inflamed deep within that a MEG brain testing catches when a patient is enduring intense therapy treatment for PTSD. My psychologist wanted me to pursue this type of medical testing and treatment because I have PTSD and do have generalized tonic clonic seizures and partial seizures. But my family can not afford the expensive testings required to pursue additional testings to find origin answers. I am not medicated anymore and still experience partial seizures weekly & generalized tonic clonic seizures about every 4-6 months. Where ever PNES comes from or the origin of a seizure, it is not an easy medical condition to live with, survive safely and is financially expensive to seek care and find answers too and most patients can not afford it too. It is not fair to toss PNES – Epilepsy & Seizures into so many categories and discrepancies to patients. Seizures are confusing and complex in our life as it is without a conscience choice to have them. But based upon a medical diagnosis a patient receives of their seizures, it can be more difficult to accept than the initial seizures are too. Stigmas are hard enought to break about educating others about seizures but when when my daughter came home from her nursing class this week and says her teacher did not even know what PNES is esd….all I know is I might as well have patience and prayers of faith on my side ’cause this medical mystery is not going to end no time soon~ Thank you for sharing your findings and I do hope one day that there will be a cure and answers for every one who suffers from a seizure.