Psychogenic non-epileptic seizures: a health condition that is still unknown by many professionals and the general public alike - Feature Article
Psychogenic non-epileptic seizures (PNES): a very serious health disorder that has somehow fallen in a black hole between neurology and psychology
Our feature article in this quarterly issue focuses on a serious health condition that is seen with quite a bit of frequency at epilepsy centers across the country and the globe: psychogenic non-epileptic seizures (PNES).
We sat down with clinical psychologist and director of the Northeast Regional Epilepsy Group PNES Program, Dr. Lorna Myers, to learn more about this potentially disabling condition that has remained in the shadows until recently. Lorna Myers, Ph.D. is the Director of the PNES Treatment Program at the Northeast Regional Epilepsy Group and is the Executive Director of Epilepsy Free. She is also the Co-chair of the Psychosocial Comorbidities Committee at the American Epilepsy Society (with a special interest in PNES) and will be coordinating the PNES Special Interest Presentation in 2017 at the American Epilepsy Society annual meeting. She earned her Ph.D. in Clinical Psychology from The City University of New York, completed her pre-doctoral training in Bellevue Hospital and her post-doctoral fellowship training in neuropsychology at the NYU Comprehensive Epilepsy Center. Dr. Myers has been working with patients who carry the diagnosis of PNES for 15 years and has authored three books on the topic ("Psychogenic non-epileptic seizures: A Guide," "Crisis no epilepticas psicogenas: Una Guia," and "In our Own Words: Stories of those living with, learning from, and overcoming the challenges of psychogenic non-epileptic seizures" {with co-author Mary Martiros}. She has also published many articles about PNES in scientific journals.
What are psychogenic non-epileptic seizures and how do they differ from epileptic seizures?
A non-epileptic attack or seizure is a behavioral event that may involve sudden, involuntary, and usually brief (although in some cases, episodes can last up to an hour or more or can also cluster into several events over a period of time) changes in movements, sensations, and/or alteration of consciousness. They look very similar to an epileptic seizure and can be really hard to differentiate from epilepsy because of this. The principal difference between an epileptic and psychogenic non-epileptic attack is that non-epileptic episodes occur without the electrical changes that are present in the brain during epileptic attacks and which are visible though electroencephalographic (EEG) testing.
We've heard that there is some controversy about how this condition should be called in the first place. It seems that "pseudoseizures" has become an outdated term and there is encouragement coming from both PNES experts and the PNES community for it to not be used anymore.
You've heard right. "Pseudo" can mean "fake," or "false" which is a terribly inaccurate term to describe these seizures or events. Rather, these events are very real, can be disabling, can cause injuries, and unfortunately, often stem from very severe psychological trauma. Unfortunately, when these patients are labeled as having "pseudoseizures" (aka "fake seizures"), the health professionals' attitudes can and often do change for the worst and patients are mistreated. Friends and family may also sense that they have somehow been fooled by the patient if doctors are calling these "fake seizures" and can misinterpret how serious this health condition really is and the amount of work it will take to recover. These are just a few reasons why "pseudoseizures" is an outdated term and should not be used anymore, especially by health professionals.
Why would someone develop PNES in the first place?
Although there is still much that we need to learn about psychogenic seizures, our research consistently shows that in adults, the most common risk factor is psychological trauma (e.g. sexual or physical abuse in childhood, man-made disasters such as 911, torture, trauma from war or in certain professions [e.g. emergency medical staff, firefighters, etc.] in which workers are exposed to horrific scenes, etc. When trauma is severe, no one is immune. When the brain encounters trauma, it tries to defend the survivor in the best way it knows how, which can lead to post traumatic stress disorder (PTSD) characterized by avoidance behaviors such as struggling most of the day to avoid places, situations, people, and memories that might be reminders of the trauma, intrusive symptoms such as nightmares and flashbacks, hyperarousal symptoms such as startle responses, difficulty sleeping and depressed mood. Unfortunately, sometimes PTSD can develop with the added complication of dissociative events (i.e. non-epileptic seizures). Dissociation is an extreme response or defense the brain uses to distance itself from an unbearable situation and in essence it involves splitting awareness and "leaving the here and now." The brain learns to do this during the traumatic event but then continues doing this automatically every time the patient encounters something distressing (e.g. an argument, a frightening experience). Dissociation can become such a common response that it may end up occurring daily which is terribly frightening and disruptive to the person's life. The most important take-home message in this article is that these patients are quite ill and they need psychological treatment as well as compassion and care.
How is PNES diagnosed?
The diagnosis is made through the use of technology and thorough interviewing and history-taking. Like we said before, PNES differ from epilepsy in that while the patient is exhibiting behaviors, movements, and experiencing altered consciousness, the EEG does not reveal unusual electrical activity in the brain. So, the movements, behaviors and mental changes are there, but they are not caused by epileptic activity in the brain. This, along with a thorough history that often reveals the typical risk factors (psychological trauma, history, associated psychiatric conditions, etc.) found in PNES as well as the discovery of current stressors further supports the diagnosis of PNES.
What are some of the difficulties that someone with PNES encounters in their day-to-day life, with health professionals, and on their road to recovery?
There are a multitude of difficulties encountered by those living with PNES or caring for someone diagnosed with PNES. Many of these are similar to those encountered by people living with epilepsy, including, the unexpected nature of the seizures that can occur at any time, place, and can cause injuries, embarrassment, problems at work or in school. Additionally, often, those with PNES also have their driving privileges revoked leaving them with the added complication of losing independence and mobility. Added to this, persons with PNES also carry one or more psychological conditions (e.g. depression, PTSD, anxiety, personality disorders, etc.) and this further burdens them. The most important thing for someone with PNES to remember is that once you receive the diagnosis you are better prepared to know where and what to do regarding recovery and also what you may not need anymore (e.g. anti-epileptic medications). Then, when you find a psychotherapist, work steadily and consistently on making it in to sessions, learning the relaxation and "grounding" exercises and homework, keeping a seizure log and tracking triggers, and working towards gaining control over your psychological symptoms including the seizures. You must work as a team with your therapist.
The caregivers face similar problems as do those of people with epilepsy including needing to adjust their schedules and activities, concern over leaving the person alone and about possible injuries, the anguish of facing an unpredictable and potentially disabling disorder, confusion about the diagnosis and treatment, etc.
Is there some form of treatment for this disorder?
Yes! In the last few years there has been a tremendous surge in treatment research for PNES and several treatment modalities are looking promising. These include, cognitive behavioral therapy and prolonged exposure therapy with certain modifications in session for the seizures, psychodynamic therapy, group and psychoeducational approaches, and acceptance and commitment therapy (ACT) or mindfulness.
What is the success rate?
We measure success rate by whether seizure frequency goes down or better yet, seizures completely go away. But, since PNES is a psychological condition, we are also targeting and measuring improvements in mood, anxiety levels, PTSD symptoms, quality of life, and other variables. The success rate for most treatments is about 1/3 to ½ by the end of treatment. Our group has a report on the effectiveness of prolonged exposure that was just published (http://www.sciencedirect.com/science/article/pii/S1525505016304334) in which 80% of patients ceased having seizures by the last session and at follow-up of 1-34 months depending on the patient, over 50% were well enough to be employed or enrolled in school. Dr. Curt LaFrance also has reported in several articles very promising results with 50%-60% success rate with CBT-ip and very promising follow-up data as well.
Thank you, Dr. Myers, for sitting with us and explaining this difficult health condition to our readers. Here are some resources provided by Dr. Myers for those wanting to read more about this disorder:
http://nonepilepticseizures.com/
http://blog.nonepilepticseizures.com/
https://www.facebook.com/Psychological-Non-Epileptic-Seizures-144184112260986/
https://www.youtube.com/channel/UCFtwt4H9d1yF4KBlJ5EffoA
Note: purple and teal are the official awareness colors of PNES. Purple represents seizures and teal represents PTSD. The ribbon at the top of this article is the official PNES awareness ribbon.
