1. Psychogenic Non-epileptic Seizures
Introduction

2. 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
psychological trauma is part of the patient’s history

3. What do we call these seizures/events?
Over the centuries, PNES events have been called a lot of things.
Pseudo seizures
Psychogenic seizures
Hysterical seizures
NEAD-Non epileptic attack disorder (UK)
Dissociative seizures
Psychological/psychogenic non epileptic seizures or events

4. 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

5. 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 the images on video during the actual episode.
In persons with PNES there are no electrical changes in the brain at the time of the seizure (different from the epileptic seizures where many identifiable changes are seen)

6. How is the diagnosis of PNES made?

7. Are there other tests?
Neuropsychological testing (cognitive and psychological).
Psychiatric/psychological interview.
Possibly other diagnoses need to be ruled out -non-epileptic seizures (physiological)

8. 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.

9. 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)

10. 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.

11. 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

12. HOW COMMON IS A FAMILY HISTORY OF EPILEPSY?
Some research suggests that 3 to 4 out of 10 people with PNES report that someone in their family has epilepsy.

13. 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

14. 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
PNES is rare in children younger than 5 and in adults older than 55 but it certainly has been reported as occurring at these ages as well.

15. 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.

16. 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

17. Is treatment available?
Cognitive behavioral treatment
Psychodynamic therapy
Mindfulness-based treatments
Hypnotherapy
Group therapies and psychoeducation
Medication

18. 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)

19. Other Challenges of PNES
Quality of life
Safety issues
Practical issues (driving, working, studying, relationships)
What resources are there if any?
How about the caretakers? How can life be improved?

20. 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.

21. Official PNES awareness ribbon

22. A Leelee N. Mike graphic

23. Northeast regional epilepsy group (NEREG)
Launched in 1998
A multi-site practice in New Jersey, New York and Connecticut that offers unique services and comprehensive care to children and adults including one of the few PNES subspecialty programs in the US.

24. Northeast regional epilepsy group (NEREG)
One of the few epilepsy programs that has psychiatrists, clinical psychologists and social workers who are specialized in the treatment of PNES and trauma (PTSD).
Our treatments have been adapted to target the problems and triggers that are usually found in psychogenic non epileptic seizures.
Our patients remain under the combined care of their epilepsy doctor and their psychologist and/or psychiatrist.

25. Our main office

26. Resources and contact
Psychogenic Non-epileptic Seizures: A Guide available on Amazon
Website:
Webinar on Introduction to Psychogenic non-epileptic seizures on YouTube
Facebook: Psychological non epileptic seizures
for continuing education scholarships and funds for educational programs