Psychogenic non-epileptic seizures (PNES) can be one of the most difficult topics to discuss both for the patient as well as the health care provider. It is estimated that PNES are diagnosed in 20 to 30% of patients seen at epilepsy centers for intractable seizures. The diagnosis of PNES is much more common than most people would think, in actuality, PNES is pretty common. Surprisingly, almost 25% of individuals diagnosed with epilepsy that are not responding to anti-epileptic drugs were found to be misdiagnosed. Unfortunately, once a diagnosis of epilepsy is made, it is often difficult to get the diagnosis adjusted and or changed. For most people, the diagnosis of seizures depends largely on the observations of others who may not be trained to notice the subtle differences between an epileptic and non-epileptic seizure. Persons experiencing a “seizure” are often unable to remember events leading up to the seizure, may have marked difficulty explaining to a physician what they actually experienced, or have sufficient insight to understand the difference between an epileptic seizure and a non-epileptic seizure.
Psychogenic non-epileptic seizures look very similar to epileptic seizures; however, they are not caused by abnormal brain electrical discharges. For many sufferers of PNES, psychogenic seizures are the result of extreme psychological distress. In fact, some persons diagnosed with a seizure disorder often believe they are having an epileptic seizure when in fact they are having a non-epileptic seizure brought on my significant distress. To be clear, the symptoms of both a non-epileptic seizure and an epileptic seizure can look the same, e.g., falling, shaking, biting of tongue, convulsions, etc. Less frequently, PNES may mimic absence seizures or complex partial seizures with temporary loss of attention or staring. A physician may suspect PNES when the seizures have unusual features such as type of movements, duration, triggers and frequency. A major barrier to care for PNES has been the stigma associated with the label “psychogenic.”
Causes of Psychogenic Seizures Can Include:
- Electrolyte imbalance
- Extremely low blood sugar
- Withdrawal from drugs or alcohol
- Extremely high fever
- Brain damage from stroke, brain surgery, or head injury
- Death of a loved one
- Physical injury
- Significant loss or sudden change
- Sexual abuse
Unfortunately, PNES are typically physical manifestations of psychological distress or disturbance. PNES is a type of Somatoform Disorder called a conversion disorder. A conversion disorder is a somatoform disorder that is defined as physical symptoms caused by psychological conflict, unconsciously converted to resemble those of a neurologic disorder. In comparison, somatoform disorders are those conditions that are suggestive of a physical disorder, but upon examination cannot be accounted for by an underlying physical condition. Notably, somatoform disorders are very difficult to treat because as soon as you extinguish one symptom another one emerges.
Diagnosis of PNES to rule out Epileptic Seizures Include:
- Video electroencephalographic (EEG) monitoring
- Identification of triggers
- Failure to respond to anti-epileptic medications
- Duration of seizure
- Types of movements that are atypical of persons suffering from an epileptic seizure
- Preserved consciousness
Once a diagnosis of PNES has been made a clinician should begin the process of “breaking down the seizure” by explaining to the patient his/her seizure is stress related. Understandably, many patients’ first reactions upon hearing they have PNES, and not epilepsy, is one of disbelief, denial, fear, sadness, and confusion. Fear and rejection of PNES typically stem from the stigma attached to mental illness that include negative labels such as “deranged”, “crazy”, “nuts”, “insane”, etc. Clinicians are encouraged to help their patients understand what may be triggering their “seizure” response. Therefore, in order to successfully treat persons with psychogenic seizures the clinician must work with the patient surrounding issues related to psychological trauma. For some patients with psychogenic non-epileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder (PTSD).
I received a referral to treat a 42 year old male name John Doe. Mr. Doe had been referred to me because his previous therapist had relocated to another state she could no longer treat John. As a part of my new patient process I read the notes of the formed physician/therapist to gain a better understanding of what brought the client into treatment, the recommendations for treatment, and the progress or lack thereof that has been made during the treatment process. One of the things that stood out for me when working with John was his assertion that he had been diagnosed with a seizure disorder 5 years earlier, had not had a seizure in over a year and a half and was not taking his medication as prescribed. He reports following his initial diagnosis he seemed to have seizures “all the time” for a period of 3 years. However, John insisted he never lost consciousness during his “seizure”, he was aware of what was going on, how long the seizure lasted, and everyone around him.
According to John, he had been in treatment for almost two years with his prior therapist following a discharge from a psychiatric facility. John had been hospitalized following several months of what his family describes as “bizarre” behaviors and a physical attack of his father during a holiday dinner. Upon his release from the hospital John began to see his previous therapist 1x per week for a period of 2 years at which time “his seizures appeared to stop on their own”. He attributes his ability to remain seizure free to the changes he has made in his diet and exercise. John informed me therapy has worked well for him in the past as his prior therapist was able to help him work through his negative feelings associated with being molested as a child. John reports he continues to struggle with anger and resentment towards his family for failing to acknowledge or intervene when his father was molesting him. John then asked me if I had any plans to move away or transfer him to another therapist, at which point he had another seizure.