PNES

Letter from the Director

Welcome! If you are looking to learn more about psychogenic non epileptic seizures (PNES), also known as non-epileptic attack disorder (NEAD) or by the very outdated term of "pseudoseizures," (which should have been abandoned by all health professionals by now) you've come to the right place.

For fifteen years, I have had the opportunity to work with patients who have been diagnosed with psychogenic seizures. I am still astonished by what patients tell me about how their life has changed since the onset of their very first seizure.  Often, there has been a great deal of confusion and fear surrounding these very unusual behavioral events (that can occur anywhere and at any time and which are incredibly disruptive to anyone who experiences them) and a frantic search for an answer and a solution.  Often times, patients have at least managed to arrive to the answer: this is not epilepsy even though it looks very much like it, and instead, it is something called "psychogenic non-epileptic seizures."  The appropriate treatment for this health condition is psychological and/or psychiatric.  

But here starts an odyssey trying to find a health professional willing and able to treat this disorder.  Many times, the epilepsy center that provides the diagnosis of PNES, cannot provide the patient with a referral to a professional who can treat this condition because they simply don't know anyone who does.   When the patient or a family member launches an independent search, the psychotherapists listed on their insurance panel or found on-line based on geographical proximity, for example, inform the caller that they are not familiar with or refuse to accept a patient with PNES. This is due to the fact that there is very little education on PNES (i.e. conversion disorders or functional neurological symptoms disorder) in medical school, psychology graduate programs, and subsequent hospital training programs.  This is one of the very important issues that needs to change!

Disbelief and uncaring attitudes may also sometimes be expressed by friends and family. They too are uninformed about this condition and may jump to the conclusion that since this is a "mental" problem, the patient should have control over it and sheer willpower should be enough to fix it.  Nothing could be farther from the truth, unfortunately.  

Adding to the patient's and the family's difficulties, in the past, finding information on psychogenic non-epileptic seizures was nearly an impossible task. Fortunately, this last problem has really turned a corner for the better in the last few years with a growing number of reputable on-line sites with information on PNES, books on PNES written for the public by professionals and advocates alike, conferences on PNES, and a very active social media movement.  

Based on my 15 years of working with PNES, I think I can honestly say that it feels like there is a new dawn approaching for this health condition.  In recent years, there has been a growing amount of research distinguishing important differences within PNES (not all patients who carry this diagnosis are the same and there appear to be several distinct subgroups) and more importantly, scientific research on effective treatments is being conducted in the USA and Great Britain with promising, if yet very preliminary, results.  

The overarching purpose of www.nonepilepticseizures.com is to disseminate and broadcast the most updated information available on psychogenic non-epileptic seizures.  Our plan is to have two sections: one for the PNES community (patients and loved ones) and another section for health professionals seeking to learn more about PNES and to stay updated on scientific reports.   However, both sections are open and can be visited by anyone.  The website aims to provide visitors with educational information about PNES, announcements of upcoming events, share scientific publications and give community voices a platform, offer a list of potential professional treatment referral sites, and anything else that might be helpful to have in a single on-line location.  Finally, our goal is to support, promote future health and empowerment and, educate all who are interested in learning about psychogenic non epileptic seizures.

I will leave you with one final comment, through our Epilepsy Free not-for-profit, we provide continuing education scholarships to patients diagnosed with PNES (I believe this is the only foundation that specifically works to assist those living with PNES).  If you want to do something tangible to support PNES, consider making a donation to http://www.epilepsyfree.com/give-back/epilepsy-free-products/.

Now, I invite you to visit the different sections of our site. Welcome! 

Lorna Myers, PhD
Director
PNES Diagnostic and Treatment Program
Northeast Regional Epilepsy Group
Executive Director, Epilepsy Free

Our recent publications
Psychogenic non-epileptic seizures:
A Guide
(new book)

Click here to look inside.

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