PSYCHOGENIC NONEPILEPTIC SEIZURES INTRODUCTION WHAT ARE PSYCHOGENIC NON

PSYCHOGENIC NONEPILEPTIC SEIZURES INTRODUCTION

WHAT ARE PSYCHOGENIC NON EPILEPTIC SEIZURES (PNES)? • Involuntary behavioral changes § movements of body parts • alteration of consciousness • loss of certain functions e. g. speech • Look like epileptic seizures but there are no changes on EEG. • Typically: • triggered by emotion (often unaware) § psychological trauma is part of the adult patient’s history

WHAT ARE PSYCHOGENIC NON EPILEPTIC SEIZURES (PNES)? • In children, trauma is less often evident as a predisposing factor. • • Undiagnosed learning problems Bullying and interpersonal problems Family dynamics Recent stressors or changes in the child’s life

HOW CAN THESE HAPPEN IF PATIENT IS NOT FEELING ANXIOUS? • Conscious awareness is not initially involved in the reactions our body has to many stimuli. NEUROPERCEPTION (electrical discharges are processed at a neuronal level) versus PERCEPTION (conscious awareness and recognition of the stimuli). Neurons finish processing an event half a second before the information it processed reaches the conscious brain; this is called: Pre-attentive emotion processing. Emotional responses in certain brain structures involved in emotional and memory processing can occur rapidly without conscious awareness, triggering responses that have not reached or been processed by the conscious mind. Therefore, a psychogenic non-epileptic seizure might easily be triggered without the person who suffers the seizure being aware of what triggered it.

WHAT DO WE CALL THESE SEIZURES/EVENTS? • Over the centuries, PNES events have been called a lot of things. • Pseudo seizures • Hysterical seizures • Possession Now: • NEAD-Non epileptic attack disorder (UK) • Dissociative seizures • Psychogenic seizures • Psychological/psychogenic non epileptic seizures or events

HOW IMPORTANT IS IT TO MAKE THE DIAGNOSIS QUICKLY? The sooner, the better! A misdiagnosis of epilepsy can lead to: • Dangerous interventions in the emergency room, (e. g. being "loaded up" with powerful drugs and being intubated) • Spending years taking unnecessary medications • Making life choices that are based on a wrong diagnosis

HOW IS THE DIAGNOSIS OF PNES MADE? • Can someone tell if it is PNES or epileptic seizures (ES) just by looking at the event itself? NO! • Video EEG is the gold standard. It allows doctors to look at both the brain wave data, as well as the images on video during the actual episode. • In PNES, there are no electrical changes in the brain at the time of the seizure (different from the epileptic seizures)

HOW IS THE DIAGNOSIS OF PNES MADE?

ARE THERE OTHER TESTS? • Neuropsychological testing (cognitive and psychological). • Psychiatric/psychological interview. • Possibly other diagnoses need to be ruled out -nonepileptic seizures (physiological)

DIAGNOSTIC DELAY • Even with cutting-edge technology available to medical doctors these days, the average delay between the time symptoms begin and the person is diagnosed with PNES is between 7 -10 years.

A CORRECT DIAGNOSIS OF PNES WILL ALLOW THE PATIENT TO: • Start psychological treatment ASAP. • Allow the psychologist/psychiatrist and epilepsy doctor decide when and if anti-epileptic-drugs can be tapered off. • Start making changes in life based on this new diagnosis (i. e. gradually become more independent and make important life decisions)

CAN PSYCHOGENIC NON-EPILEPTIC SEIZURES CAUSE BRAIN DAMAGE OR BE FATAL? Short answer, is no. • However, if during the seizure, the patient suffers a blow or physical injury, the situation changes. • Usually an ambulance or hospital visit is not necessary when a typical PNES occurs UNLESS there has been a secondary injury suffered during the seizure.

CAN YOU STILL BE DIAGNOSED WITH PNES IF YOU ALSO HAVE A NEUROLOGICAL CONDITION? • A past history of mild traumatic brain injury (TBI) is not uncommon in those with PNES and the association is stronger in PNES than in epilepsy. • Fibromyalgia and chronic pain • 10 -30% of patients with PNES also have past or present epilepsy as well

WHAT ARE INTELLIGENCE AND MENTAL FUNCTIONS LIKE IN PERSONS WITH PNES? • Intellectual functioning of patients with PNES is not different than the norm. • Patients with PNES report difficulties with: • Memory • attention and concentration • word finding • other language functions

CAN PNES OCCUR AT ANY AGE? • Although PNES can occur at almost any age, it is most common in people in the teen years and in adults between the ages of 25 -35. • PNES is rare in children younger than 5 and less common in adults older than 55 but it certainly has been reported as occurring at these ages as well.

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 centuries. 1800’s Freud and Charcot.

WHY MIGHT SOMEONE DEVELOP PNES? • Problems coping with stress (tendency to deal with stress with emotion and avoidance over task oriented response) • History of trauma and possibly PTSD • Tendency toward dissociation under stress • Alexithymia (misread and detach from emotion) • Difficulties with anger management (lack of assertiveness). • The non-stop chipping of life stressors and the “perfect storm” scenario

IS TREATMENT AVAILABLE? • Cognitive behavioral treatments • Psychodynamic therapy • Mindfulness-based treatments • Hypnotherapy • Group therapies and psychoeducation • Medication

IS TREATMENT AVAILABLE? • For those with combined PNES and PTSD: • There are several PTSD specific treatments that may prove useful. • Prolonged exposure for PTSD • Cognitive Processing therapy • Eye Movement Desensitization Reprocessing therapy (EMDR) • Dialectical Behavioral therapy (DBT)

OTHER CHALLENGES OF PNES • • Quality of life Safety issues Practical issues (driving, working, studying, relationships) What resources are there if any?

IS THERE AN OFFICIAL AWARENESS COLOR FOR PNES? • 2014, a grassroots movement on Facebook, chose two colors to represent PNES. Since PNES typically combines seizures and psychological trauma, PNES advocate, Eric L. Nelson, proposed Purple to represent seizures and Teal to represent PTSD. These received strong support. • PNES colors: Purple/Teal. • Lee N. Mike has to date created a multitude of graphics featuring these colors to spread awareness.

OFFICIAL PNES AWARENESS RIBBON

A LEELEE N. MIKE GRAPHIC

PNES ACTIVISTS • Authors: • Mary Martiros (In Our Own Words: Stories of those living with, learning from and overcoming the challenges of psychogenic non-epileptic seizures) • Kate Berger (View From The Floor: Psychogenic Non. Epileptic Seizures: A Patient's Perspective) • Kate Taylor and Jeffrey Underwood RN (The Color of seizures: Living with PNES) • Gretha Cronje and Pretorius (article in scientific journal: The coping styles and health-related quality of life of South African patients with psychogenic nonepileptic seizures; Epilepsy & Behavior 2013)

PERSONAL ACCOUNTS OF LIVING WITH NONEPILEPTIC SEIZURES (THE BRAINSTORMS SERIES) • You are invited to participate in this international project that will become a book: write about what it is like to live with PNES. • For more information and consent forms: • • • Gregg Rawlings Academic Neurology Unit, University of Sheffield Royal Hallamshire Hospital Glossop Road, Sheffield S 10 2 JF Email: ghrawlings 1@sheffield. ac. uk Telephone: 0114 2711597

RESOURCES AND CONTACT • Psychogenic Non-epileptic Seizures: A Guide by Lorna Myers • Taking control of your seizures by Reiter et al. • Website: www. nonepilepticseizures. com • Webinar on Introduction to Psychogenic non-epileptic seizures on You. Tube • Facebook: Psychological non epileptic seizures • Lmyers@epilepsygroup. com • www. epilepsyfree. com for continuing education scholarships and funds for educational programs