Despite estimates that 1 out of 5 patients sent to epilepsy centers for difficult seizures have PNES, it often takes years (about 7 years!) to receive an accurate diagnosis. The challenge is that PNES attacks look like epileptic seizures to an outside observer, yet they are not actually caused by abnormal electrical discharges in the brain. In contrast, they are emotion- and stress-related attacks.
A thorough evaluation is critical to identifying an accurate diagnosis. Working with a team of professionals that has an understanding of PNES is invaluable. For further information on the evaluation process and differentiating PNES attacks from epileptic attacks, http://www.nonepilepticseizures.com/epilepsy-psychogenic-NES-events-clinical-diagnosis.php.
The psychological processes underlying PNES attacks vary across patients, although the most commonly diagnosed psychological conditions include conversion disorder, anxiety disorders, in particular posttraumatic stress disorder (PTSD), mood disorders, dissociative disorder, and somatization disorder.
Fortunately, there is a growing initiative to enhance the understanding and treatment of PNES. Within the Northeast Regional Epilepsy Group, director Lorna Myers, Ph.D. and the PNES Diagnostic and Treatment Program are at the forefront of this initiative. There is a wealth of information on PNES offererd by Dr. Myers and her colleagues at http://www.nonepilepticseizures.com. This includes a helpful list of PNES referral sites by state, http://nonepilepticseizures.com/epilepsy-psychogenic-NES-information-referral-sites.php.
See the following additional resources to learn more:
Psychogenic Non-Epileptic Seizures: A Guide by Lorna Myers, Ph.D.
View from the Floor: Psychogenic Non-Epileptic Seizures: A Patient’s Perspective by Kate Berger
Psychogenic Non-Epileptic Seizure Community, http://nonepileptic.org
More than PNES: My life with Psychogenic Non-Epileptic Seizures, a blog by Nadine Boesten, https://morethanpnes.wordpress.com