Psychogenic Non-epileptic Seizures Introduction

What are Psychogenic non epileptic seizures (PNES)? Episodes that look like epileptic seizures but are not caused by sudden abnormal electrical discharges in the brain. Episodes of sudden onset involving involuntary movements, alterations in consciousness, or both, without changes on the electroencephalograph (EEG, a test to record electrical activity of the brain).

What are Psychogenic non epileptic seizures (PNES)? Typically: Triggered by emotion (often unaware). Some can be triggered by intense pain, illness (e.g. high fever), or physical exhaustion In Adults: psychological trauma is almost always part of the adult patient’s history. 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

What are psychogenic non-epileptic seizures NOT They are NOT volitional/done purposefully and they are not: * to gain attention * to gain access to drugs * to get out of work or school * to be a nuisance to emergency health professionals and other healthcare providers PNES is a very serious and uncontrollable health condition that tends to take over the patients’ lives and that will not resolve without proper interventions.

What do we call these seizures/events? Antiquated terms that have been abandoned (or should be): Pseudo seizures Hysterical seizures Possession Now: NEAD-Non epileptic attack disorder (UK) Dissociative seizures Psychological/psychogenic non epileptic seizures or events (PNES)

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

How important is it to make the right diagnosis? Potential for physical injuries is high: Nearly 60% experienced PNES-related injuries. 51% had experienced Psychogenic non-epileptic seizure status (i.e., lasting more than 30 minutes), 27.8% had been admitted to intensive care units=extremely dangerous Kanner A (2003) Psychogenic Nonepileptic Seizures Are Bad for Your Health. Epil. Curr., pp. 181-182.

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?

How is PNES diagnosed? Video-EEG Camera and EEG machine

Ambulatory Video-EEG In-home test

Are there other tests? Neuropsychological testing (cognitive and psychological) helps delineate cognitive functions and psychological profile. Psychiatric/psychological interview. Other diagnoses need to be ruled out -non-epileptic 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 which can lead to seizure control. • 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 are common comorbidities Around 10% 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

Can PNES occur at any age? Although PNES can occur at almost any age, it most commonly starts in 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.

A few gender facts Among civilian populations: More common in women. Among veterans: preceding history of PTSD is significant psychiatric predictive factor for psychogenic seizures (Salinsky M, et al. Psychiatric comorbidity in veterans with psychogenic seizures. Epilepsy Behav. 2012;25(3):345-349). Other gender differences (Myers L, et al. (in press). Are there gender differences in those diagnosed with psychogenic non-epileptic seizures? Epilepsy Behav) Males: * tend to use avoidance stress coping strategies and tend to exhibit depressive symptoms. Women: * significantly higher rates of sexual trauma * significantly higher rates of trauma symptomatology (dissociation and sexual disturbances)

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 and to health professionals. PNES has been around for centuries. 1800’s Freud and Charcot.

Why might someone develop PNES? History of trauma PTSD Tendency toward dissociation under stress Problems coping with stress (tendency to deal with stress with emotion and avoidance over task oriented response) 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 including prolonged exposure therapy Psychodynamic therapy Mindfulness-based treatments Hypnotherapy Group therapies and psychoeducation

Is treatment available? For those with combined PNES and PTSD: There are several PTSD specific treatments that may prove useful. Prolonged exposure for PTSD (empirical testing underway) 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. LeeLee 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 & L Myers (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). * Myers L, Jones J, Boesten N, Lancman L (2016). (article in scientific journal: Psychogenic non-epileptic seizures (PNES) on the Internet: online representation of the disorder and frequency of search terms. Seizure. Aug; 40:114-22.

Resources and contact Psychogenic Non-epileptic Seizures: A Guide by Lorna Myers Pediatric Psychogenic Non-Epileptic Seizures: A Treatment Guide 1st ed. 2017 by Caplan, Doss, Plioplys & Jones Taking control of your seizures by Reiter et al. Website: www.nonepilepticseizures.com Webinar on Introduction to 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

On-line resources Recent review discovered four professional websites dedicated to PNES There are at least 2 Facebook pages run by professionals for PNES and a few others run by PNES/FND foundations twitter®: professionals tend to use: “psychogenic seizures” and patients tend towards: “dissociative seizures,” “non­epileptic attack disorder,” and “stress seizure”. When “pseudoseizure” was used, tweets tended to be offensive. YouTube®: there were 22 professionally posted videos (good quality) and many more posted by patients/loved ones. Usual caveat: careful with self-diagnosing based on videos. Myers L, Jones J, Boesten N, Lancman L (2016). Psychogenic non-epileptic seizures (PNES) on the Internet: online representation of the disorder and frequency of search terms. Seizure. Aug; 40:114-22.