Psychogenic Non Epileptic Seizures

Welcome!

Psychogenic non-epileptic seizures (PNES) present with a sudden change in behavior, perception, thinking, or sensation that closely resemble an epileptic seizure. However, they are not accompanied by electroencephalographic (EEG) changes that occur with an epileptic seizure and are instead due to psychological distress and/or physiological dysregulation. It can take an average of seven years to properly diagnose a patient with PNES which can delay treatment and recovery significantly. It is not uncommon that a misdiagnosis of epilepsy is carried by patients prior to receiving the accurate diagnosis. In Great Britain, PNES is called non-epileptic seizure disorder (NEAD). More recently, some health professionals have proposed that PNES should be called functional dissociative seizure (FDS). In the past, PNES was called "pseudoseizures;" this term is now considered outdated and has been abandoned by many because it lends itself to stigmatization.

This website is administered by a group of specialists in PNES from around the globe who work together to build public awareness and a reservoir of information for health professionals. The purpose of nonepilepticseizures.com is to create the most comprehensive consumer information, public and professional education website on PNES in the US and other English-speaking countries. In order to achieve this, we have divided it roughly into two sections: one for the PNES community (patients and loved ones) and another section for health professionals seeking reliable information and updated scientific reports about nonepileptic seizures. Both sections are open and can be visited by anyone. Some examples of our content for the general public include a link with treatment referral sites for patients seeking care and a frequently asked questions section. An example of the professional content is a repository of peer-reviewed articles on PNES organized by topic for professionals.

In recent years, there has been a growing amount of research highlighting 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 conducted in the USA, Great Britain and Canada have produced promising, if yet very preliminary, results. This website aims to highlight these advances and ensure that they reach the audience who can most be helped by knowing about them.

With this site we are initiating an exciting new chapter in the world of PNES that we hope will have an enduring benefit for individuals suffering psychogenic seizures and anyone whose life has somehow been touched by these seizures.  

Lorna Myers, PhD