About PNES

Welcome to this educational site. Our target audience are clinicians who are already working with patients diagnosed with psychogenic non-epileptic seizures (PNES) and are seeking to learn how to work more effectively with them or those who hope to begin seeing patients with PNES in the near future!

Coming soon, patients and loved ones will also find educational recordings to help them understand and manage their condition better.

You may be wondering what we are referring to when we speak of PNES but before addressing that, we should start by mentioning that PNES is actually called by a lot of different names including non-epileptic seizures, functional seizures, dissociative seizures, etc. On our end, we choose to continue to call this condition by the abbreviation “PNES” partly because a recent poll on nonepilepticseizures.com revealed that the majority of respondents prefer this term. Also, the term is accurately descriptive.

What is PNES? It’s a disorder that is characterized by behavioral episodes that can closely resemble an epileptic seizure. PNES might present with uncontrollable body movements or loss of tone and paralysis, alteration of consciousness, inability to speak, generalized unresponsiveness, etc. but these behaviors are not due to abnormal electrical (“epileptiform”) discharges in the brain. PNES contains the term “psychogenic” because most of these patients have other, pre-existing psychological conditions (though they may not have previously worked with a mental health provider and received the diagnosis) including mood and anxiety disorders, PTSD, personality disorders, and have experienced significant trauma and life adversities.

PNES contains the term “non-epileptic” because somewhat unfortunately, it is identified by what it is not. When a patient is having what looks like an epileptic seizure, they typically undergo EEG testing, which assesses the electrical discharges in the brain. The diagnosis is made based on what is NOT seen during EEG testing; testing generally looks normal, and the EEG results might be described as “presenting no epileptiform activity”.

Furthermore, people who develop PNES tend to have two main features that essentially are the result of a disconnect between brain/mind and body:

The first disconnect that we see very clearly is a tendency to be unaware of physiological signals; for example, fatigue, hunger, thirst, etc. may not be detected by the individual. Someone with PNES might work straight through for hours on end, carry a very heavy courseload, participate in multiple extracurricular activities, may not take breaks, may forget to eat or to drink enough fluids, and then several hours later a seizure might erupt. This may be why these seizures happen more in the evening hours for many individuals with PNES.

The second very important disconnect between mind and body involves emotions. What are emotions other than bodily signals that alert us to something going on in our environment? Sadness might signal a loss, irritation might signal something that seems unfair, anger might signal that someone is behaving in a threatening manner. Many individuals with PNES tend to present with a certain “blindness” to their feelings, or in other words, “alexithymia.” In PNES, alexithymia results in the signal that the body emits (anger, sadness) not making it to consciousness. And emotions are a bit like energy charges. If they don’t get discharged in a natural manner (e.g., crying, yelling, laughing), they tend to remain active and may eventually be expressed physically. In PNES, they are expressed through physical symptoms of movement, loss of tone, vocalizations, etc. Keep in mind that PNES is not the only somatoform disorder, some individuals might express suppressed emotion through skin rashes, balding spots (alopecia areata), irritable bowel syndrome, etc.

In sum, because of these two factors (disconnect between brain/mind and emotion and physiological needs) and prior experiences of chronic stress and psychological trauma or adversities, the foundations are laid for PNES to emerge at some point in life.

Psychologists, psychotherapists, psychiatrists and other mental health professionals are the clinicians best prepared to assist patients in recovering from this seizure condition.

We invite you to continue to visit our site and to learn more from the new lectures that will be uploaded regularly. We are also working on creating a course for mental health professionals who strive to become PNES-certified therapists able to work effectively with adult and/or pediatric patients who carry this diagnosis. Our goal is to ensure that patients who are told upon diagnosis to “seek a mental health provider” will increasingly encounter mental health clinicians who are knowledgeable about PNES, who are skilled, well-prepared and confident and who are more than open to working with this population.

Lorna Myers, Ph.D.
Julia Doss, Psy.D.