PSYCHOGENIC NONEPILEPTIC SEIZURES
INTRODUCTION
WELCOME!
• First PNES/NEAD conference in the US
• Historic Event that will hopefully become a tradition
• And sow seeds growing a strong community and
necessary projects
• Create an alliance between dedicated health
professionals and patient advocates
NORTHEAST REGIONAL EPILEPSY
GROUP
• One of the few epilepsy centers in the US with a
comprehensive PNES diagnosis and treatment
program
• 16 years old
• 20 epileptologists, 4 neuropsychologists, 2 clinical
psychologists, 1 social worker
• Offices: 9 in NY (Staten Island, Manhattan, White
Plains, Middletown, etc.), 9 in NJ (Hackensack,
Summit, Jersey City, etc.) and 1 in CT.
• Hospital-based epilepsy units: 7 in NJ and 8 in NJ
EPILEPSY FREE FOUNDATION
• First foundation to conspicuously identify PNES as a
seizure disorder and to utilize its resources to support
PNES
• Psychogenic non-epileptic seizure disorders: A
Guide: all royalties go to the EF Foundation to
support these programs:
• Continuing Education Scholarships for persons diagnosed
with PNES
• Support for educational programs for the general public
and professionals
• Support treatment research
TODAY’S PROGRAM
• 9:15-10
Understanding PNES through neuropsychological testing? Robert Trobliger, Ph.D
• 10-10:45
How is PNES diagnosed through Video-EEG? Christos Lambrakis, MD
• 10:45-11:00
Break
• 11-11:45
Treating PNES through relaxation techniques, logs, and mindfulness-Urmi Vaidya, LCSW
• 11:45-1pm
LUNCH
• 1-1:45
Treating patients with PNES who also carry a diagnosis of PTSD: Prolonged Exposure
Therapy-Lorna Myers, Ph.D
• 1:45-2:30
Quality of Life and Wellness in PNES-Lorna Myers, Ph.D.
• 2:30-2:45
Break
• 2:45-3:30
Caretakers-how can you be helped and how can you help?-Urmi Vaidya, LCSW
• 3:30-4:00
Closing comments and questions
TODAY’S PROGRAM
• Once the formal meeting is over informal meeting
from 4-5PM
• PNES Community will meet and we can discuss future
projects and where we are going from here.
WHAT IS PNES?
• Involuntary behavioral changes (movements of
body parts, alteration of consciousness, loss of
certain functions such as speech, etc.) that
resemble epileptic seizures but do not demonstrate
epileptiform activity during brain wave recording
with an EEG.
• They are typically triggered by emotion in one form
or another and often psychological trauma is part
of the patient’s history.
IS THIS A RARE CONDITION?
• Estimates of 2-33 out of every 100,000 people have
PNES.
• Up to 30% of patients seen on inpatient epilepsy
monitoring units will be diagnosed with PNES.
• PNES is about as prevalent as Multiple Sclerosis but
receives much less exposure and is relatively
unknown to the public.
• PNES has been around for hundreds of years. 1800’s
Freud and Charcot.
• Around 10% have PNES and ES
HOW IS IT DIAGNOSED?
• PNESs can have countless presentations: paralysis,
intense thrashing, stuttering, blinking, change in
consciousness, etc.
• Video-EEG monitoring is the Gold Standard for
diagnosis.
• Epilepsy Centers staffed by epilepsy specialists (aka
epileptologists) offer this diagnosis.
ARE THERE OTHER TESTS?
• Neuropsychological testing (cognitive and
psychological).
• Psychiatric/psychological interview.
• Possibly other diagnoses need to be ruled out -nonepileptic seizures (physiological)
WHY MIGHT SOMEONE DEVELOP PNES?
• History of trauma and possibly PTSD
• Tendency toward dissociation under stress
• Problems coping with stress (emotion and
avoidance over task)
• Alexithymia
• Difficulties with anger management (assertiveness).
Tendencies to hold emotions in and to detach from
emotion.
IS TREATMENT AVAILABLE?
• Cognitive behavioral treatment: How you think and
interpret an event affects how you feel about it and
how you behave.
• Prolonged exposure for PTSD: Avoidance of
traumatic memories and associated reminders fuel
the post-traumatic disorder. Treatment involves
exposure/confrontation of the trauma and real
behavioral changes.
• Psychiatric medications
• Chapter 2
LIVING WITH PNES
• Quality of life
• Safety issues
• Practical issues (driving, working, studying,
relationships)
• What resources are there?
• How about the caretakers? How can life be
improved?
RESOURCES AND CONTACT
• Psychogenic Non-epileptic Seizures: A Guide
available on Amazon
• Website: www.nonepilepticseizures.com
• Webinar on Psychogenic non-epileptic seizures on
YouTube
• Facebook: Psychological non epileptic seizures
• Lmyers@epilepsygroup.com
• www.epilepsyfree.com for continuing education
scholarships and funds for educational programs