According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disease, and it can begin at any age. There are an approximate 3.4 million people currently living in the U.S. with an active case of epilepsy and there are 150K new cases every year. That means that 1 in 26 people in the U.S. will develop epilepsy at some point in their lives.
The number of people who have psychogenic non-epileptic seizures (PNES), however, is not known. PNES may account for 5 to 20 percent of the people diagnosed with epilepsy. In fact, as many as 1 in 4 people referred to epilepsy centers with difficult to treat seizures are told that their seizures are “psychological”. A complicating factor is when the conditions co-occur for a small group of people.
Even as common as both epilepsy and PNES are, they are both misunderstood by many in the medical and mental health professions. This often leads to misdiagnosis and mistreatment of the conditions. When a person receives a diagnosis of PNES, they are usually told that the events that they are experiencing are unconscious and involuntary. But that the recommended treatment is cognitive-behavioral therapy, which only focuses on changing specific thoughts and behaviors that are within the person’s conscious awareness. Do you see the contradiction?
Sigmund Freud was an Austrian neurologist, and he is considered by many to be the father of psychoanalysis. He was the first person to theorize the concept of what we now know as PNES. He was a man of his time and he used language consistent with what was most familiar to him and his own unconscious conflicts. However, due to Freud’s medical background and his work with the unconscious, he was able to accurately diagnose and interpret the psychological conflicts that resulted in the physical symptoms that he observed while conducting psychoanalysis. Clients experienced relief from their suffering as a result.
The reality is that as many as half of people who are diagnosed with PNES become symptom-free once their diagnosis has been confirmed without receiving any further treatment. For the remainder, research suggests that another fifty percent show “improvement” in as little as three months of active participation in psychotherapy. My experience working with PNES supports this research, but it may take longer than three months to become symptom-free.
Psychotherapy is an effective treatment for both epilepsy and PNES, but the treatment approach is different based on the confirmed diagnosis, personal history, and unique goals. Stress and overexertion are common triggers for people with epilepsy, so stress management techniques and lifestyle changes are often a part of the treatment plan. People, who experience PNES, often have unconscious anger that needs to be resolved through forgiveness. A history of trauma or abuse, mood and anxiety disorders commonly co-occur with epilepsy and PNES, and treatment of these may help to improve the overall quality of life, if not also result in a reduction of events.
Epilepsy Foundation (2022). Who can get epilepsy? Last retrieved on January 23, 2023 from https://www.epilepsy.com/what-is-epilepsy/understanding-seizures/who-gets-epilepsy
Epilepsy Alliance America (2023). FAQs about Psychogenic Nonepileptic Seizures (PNES) [Updated 12/19/2022] – Content Provided by Epilepsy Alliance Louisiana. Last retrieved on January 23, 2023 from https://www.epilepsyallianceamerica.org/pnes/
Sigmund Freud called these events “hysteria” when working with women who had a history of trauma. However, it’s believed by those who work primarily with PNES that this word dates back thousands of years before and is associated with unusual symptoms in women that were thought to be due to their “wandering uterus”. [It should be noted that Freud is not the only one to use language consistent with the culture of his time. Even the American Psychiatric Association (APA) acknowledges that issue in the DSM-5-TR and is constantly changing the language used based on the ‘culture’. Even those who work with PNES have their own uncertainty and no common language for what to call this phenomenon, yet nearly everyone wants to have a diagnostic name for it, in order to treat “it”, rather than focus on helping you heal by identifying the original cause and working through the process of psychotherapy. PNES – Psychogenic Nonepileptic Seizures (2011-2020). FAQs about psychogenic nonepileptic seizures (PNES). Last retrieved on January 23, 2023, from https://nonepilepticseizures.com/epilepsy-psychogenic-NES-faqs-correct-name.php
Epilepsy Foundation (2023). Psychogenic Nonepileptic Seizures (PNES). Last retrieved on January 23, 2023, from https://www.epilepsy.com/diagnosis/imitators-epilepsy/psychogenic-nonepileptic-seizures