Dr. Selim Benbadis, Director of Comprehensive Epilepsy Program and Professor of the Departments of Neurology and Neurosurgery at the University of South Florida and Tampa General Hospital stated, "In addition to being common, psychogenic symptoms pose an uncomfortable and often frustrating challenge, both in diagnosis and management." Dr. Benbadis is a pioneer in the study of PNES and has encouraged the neurological and psychiatric communities to broaden their clinical knowledge base in relation to the diagnosis and treatment of people who experience PNES. In an article published in Epilepsy & Behavior, Dr. Benbadis stated, "The American Psychiatric Association has abundant written patient education material available on diverse topics, but none on somatoform disorders. Psychogenic symptoms are also not the subject of much clinical research. Thus, there seems to be a severe disconnect between the frequency of the problem and the amount of attention devoted to it."
Misdiagnosis of Epilepsy and PNES
Dr. Benbadis also suggests that the misdiagnosis of epilepsy in people with PNES is a common occurrence. In fact, around 25% of people who have a previous diagnosis of epilepsy and are not responding to medication therapy are found to be misdiagnosed. After a person receives a diagnosis of epilepsy it is easily perpetuated without being questioned, something that explains the usual diagnostic delay and the costs associated with PNES.
It is important to understand that a diagnosis of PNES might be hard to achieve initially for a number of reasons. Doctors are taught almost exclusively to consider and exclude physical disorders as the cause of physical symptoms. In addition, doctors are more likely to treat for the more serious condition if they are in doubt of the diagnosis, something that explains why a number of people misdiagnosed with epilepsy are prescribed anti-seizure medications. Also, the diagnosis of seizures depends largely on the observations of others who might not be trained to notice the subtle differences epileptic and non-epileptic seizures. Many doctors do not have access to EEG-video monitoring, something that has to be performed by an, 'epileptologist,' or a neurologist who specializes in epilepsy.
PNES are attacks that might look like epileptic seizures, yet are not caused by abnormal brain electrical discharges. They are a manifestation of psychological distress. Often, people with PNES may appear as if they are experiencing generalized convulsions similar to tonic-clonic seizures with shaking and falling. Less frequently, PNES may mimic absence seizures, or complex partial seizures with temporary loss of attention or staring. A doctor might suspect PNES when the seizures have unusual features such as duration, type of movements, triggers and frequency.
Causes of PNES
A particular traumatic event such as sexual or physical abuse, incest, the death of a loved one, a divorce, or another type of great loss or sudden change may be identified in many people who experience PNES. By definition, PNES are a physical manifestation of psychological disturbance and are a type of Somatoform Disorder called a, 'Conversion disorder.' Somatoform disorders are conditions that are suggestive of a physical disorder, yet upon examination cannot be accounted for by an underlying physical condition. 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. Conversion disorder tends to develop in a person's adolescence or early adulthood, although it may happen at any age. It appears to be somewhat more common among women.
According to Dr. Benbadis, while EEG's are helpful in achieving a diagnosis of epilepsy, they are often times average in people with proven epilepsy and should not be used alone as a diagnostic tool for epilepsy. The most reliable test to make the diagnosis of PNES is EEG-video monitoring. During a video-EEG, the person is monitored over a period of time ranging from several hours to several days with both a video camera and an EEG until they experience a seizure. Through analysis of the video and EEG recordings, a diagnosis of PNES may be made with near certainty. After receiving a diagnosis, the person will usually be referred to a psychiatrist for additional care.
Dr. Susan Kelley, Professor of Behavioral Health at the University of South Florida, Tampa states, "Somatoform disorders are very difficult to treat because as soon as you extinguish one symptom another one pops up. These disorders consume a lot of time, money and tend to invoke a tremendous amount of frustration on the part of the healthcare professionals working with this population." Dr. Kelley has been able to circumvent this frustration by adopting a trauma-focused clinical approach that not only serves her well as a clinician, it also helps people with PNES to overcome their seizures.
For some people with psychogenic non-epileptic seizures (PNES), the seizures are a manifestation of trauma which is also known as Post-Traumatic Stress Disorder. To treat people with PTSD, a clinician has to take the seizures apart to see what the seizure represents in terms of emotions and memory, as well as where this trauma is store in the person's body. Dr. Kelley postulates that when a person experiences trauma such as sexual or physical abuse, or is a witness to violence for example, their body may absorb the trauma. A seizure is the body's way of expressing what the person's mind and mouth is unable to. Dr. Kelley has found the most effective treatment of PNES is a therapeutic technique called, 'Eye Movement Desensitization and Reprocessing (EMDR).' EMDR integrates elements of many psychotherapies including:
During EMDR, a person attends to past and present experiences in brief sequential doses while simultaneously focusing on an external stimulus. The person is then instructed to allow new material to become the focus of the next set of dual attention. The sequence of dual attention and personal association is repeated a number of times in the session.
Dealing with Stigma and Psychiatric Disorders
Perhaps understandably, a number of people's initial reactions after hearing they have PNES and not epilepsy is one of denial, disbelief and confusion. The reason why is because mental health issues come with highly stigmatizing labels such as, 'insane,' or, 'crazy.' These stigmas are embedded in our language and even more deeply in our unconscious belief system. People with PNES; however, are neither, 'crazy,' nor, 'insane.'
Some people with PNES are victims of trauma and their recovery from the trauma, as well as the seizures, depends mainly on their ability to overcome the stigma and follow-up with a mental health professional. Dr. Bendabis and Dr. Kelley agree - PNES is a real condition that arises in response to real stressors. The seizures are not consciously produced and are not the person's fault. Dr. Kelley stated, "We need to take the shame and stigma away associated with psychiatric illnesses and instead focus on the fact that many people with PNES have a trauma history. It is so vital for people suffering with PNES to know that there is hope and that PNES is treatable through such techniques as EMDR." While EMDR works for people with PNES who have experienced trauma, it does not work with people who have not. Kelley emphasizes the need for increased cooperation and collaboration among the psychiatry, neurology and psychology disciplines so we can find more treatments that will bring relief to people.
Recent PNES Research
In his latest study, Dr. Benbadis and colleagues examined the relationship between chronic pain or fibromyalgia and psychogenic seizures. They designated two groups:
Dr. Benbadis and colleagues derived their data from the records of all people evaluated over five years in a single epilepsy clinic for refractory seizures, as well as through EEG-video monitoring. In the first group they identified 28 people with a diagnosis of fibromyalgia and 8 with a diagnosis of chronic pain.
After EEG-video monitoring, 27 were diagnosed with PNES. In the second group they identified 13 people who had a, 'seizure,' during their clinic visit. After EEG-video monitoring, 10 were diagnosed with PNES. Dr. Benbadis stated, "These findings suggest that a history of fibromyalgia or chronic pain and the occurrence of a seizure during the visit both have a high predictive value (75% each) and a very high specificity (99%) for an eventual diagnosis of PNES." Dr. Benbadis speculates the association between chronic pain and PNES may be because chronic discomfort may cause psychological distress which may result in PNES. Dr. Benbadis also points out that another possibility is that fibromyalgia and chronic pain are loosely made diagnosis that are largely psychogenic in themselves.
Whether or not fibromyalgia and chronic pain are largely psychogenic in nature is still a very controversial subject. Some researchers believe fibromyalgia is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. Others in the medical community strongly believe fibromyalgia and chronic pain are psychogenic in their etiology since there is no clear underlying medical cause. At this time, the rift between the two schools of thought endures.
Treating Psychogenic Non-Epileptic Seizures
Psychogenic Non-epileptic Seizures
Psychogenic Seizures - Support and Resources