By Dr. Patricia Penovich
A non-epileptic seizure is an event that looks to all those who observe it like the person is having an s epileptic seizure. Yet it is not an epileptic seizure. An epileptic seizure is the result of disordered brain cells firing excessively and not being shut down by normal brain mechanisms. An epileptic seizure is characterized during the seizure event by abnormal patterns either from one brain area as in a focal seizure or involving the whole brain as in a generalized seizure. An EEG recorded during a nonepileptic seizure does not show abnormal patterns during the event; it looks the same during the event as when the person is not having the seizure event. The NEE may look like a focal seizure with or without maintained awareness or may look like a whole-body generalized seizure.
This name of “non-epileptic seizure” can be confusing for people because the name seems to imply that it is a “seizure”. This is why many clinicians will call it a non-epileptic event, or NEE. NEE’s are one of several neurologic disorders which do not have a physiologic origin, i.e. they do not originate from the body’s true function. As such they are classified as a Functional Neurological Symptom Disorder (Conversion Disorder) in the Manual of Mental Disorders or DSM 5. In the past, people have used less acceptable terms such as pseudoseizure.
NEE’s can occur in children or in adults, occurring more frequently in females than males. Because they mimic true seizures, they are often not recognized for many years as being NEE. The person often has been seen by multiple emergency rooms, and multiple physicians including consultants in attempts to arrive at the appropriate diagnosis and treatment. For example, if a person suddenly loses awareness and falls to the ground, they may be thought to have fainted (had a syncopal spell due to low blood pressure or to an abnormal heart rhythm or a drop seizure). They may have had frequent hospitalizations, many EKGs, tilt table tests, multiple cardiac monitoring sessions, multiple CT or MRI scans, and even more invasive tests. They may have been treated with a variety of medications. These medications, however, have not “worked” because the person was not having cardiac problems, blood pressure problems or seizures. Other common diagnoses that the adult with NEEs may have been treated for include sleep disorders, especially cataplexy, or myoclonus or tics. Children with NEEs may actually have breath-holding spells while crying, myoclonus of infancy, night terrors, or gastrointestinal reflux (Sandifer’s syndrome in infancy) which may have been thought to be seizures but which did not respond to seizure medications. As a result, the patient and the health care system have spent much time and many dollars to no avail. The person and family and the health care professionals experience much frustration due to continued events, lack of response to treatments, and inability to improve the person’s condition. Additionally, the person’s work, school, and/or social achievement may have been affected leading to a diminished quality of life. Even though the NEEs are not true seizures, they do interrupt the person’s functioning in the environment, thus placing limits on activities such as driving.
The gold standard for making the diagnosis of NEE is to have recorded the behavior that the person experiences that is thought to be a seizure while the person is undergoing a video EEG so that any behavioral change can be correlated or not with an EEG change. Some persons may have more than one type of event and will need to have each type recorded to be sure. It is not uncommon for some people to actually have a mixed disorder with some events being true epileptic seizures and others being NEEs; some 20% of patients who are referred to a higher-level epilepsy monitoring unit have both epileptic seizures and NEEs.
There is no one cause for NEEs, however. People who have NEEs frequently have underlying depression, anxiety, or psychosocial stressors. They suddenly begin to occur due to some unrecognized trigger or at times of increased stress. NEEs are not a symptom of neurologic injury‚ damage‚ or disease. They should be appropriately treated with antidepressants anxiolytics and/or other therapies. This often involves a referral to a trained therapist who explores the person’s individual environmental and psychosocial circumstances and establishes other co-diagnoses such as PTSD, anxiety, depression, or panic disorder. There are multiple different types of therapy modalities available for working with the disorder‚ some of which are cognitive behavioral therapy, trauma-focused therapy, relaxation skills training, and biofeedback.
It is important to have a psychological assessment and often a social work assessment to evaluate the risk factors the person has and the specific triggers for each individual. Triggers for children are often school difficulties, bullying, family problems, or loneliness. Adults are often victims of distant physical or sexual abuse, experience chronic pain, have had a prolonged illness in the past, have a pattern of poor coping skills, or are experiencing overwhelming stress currently. This type of evaluation requires a multidisciplinary team effort which is best accomplished in an epilepsy monitoring unit with continuous video EEG.
Once the diagnosis is clearly established the person should have a non-accusatory and compassionate conversation with the health care professional who can emphasize that the diagnosis is not epilepsy and that the events are not under conscious control. It should be emphasized that these events are common and can be difficult to distinguish from epileptic seizures. Epilepsy medications will not work for NEEs. They do not have to go to the emergency room.
Although their natural history is not always known for a specific individual‚ most tend to stop with appropriate management for that individual. Consistent follow-up as well as a supportive social and family environment greatly improves the likelihood that these events will get better and even resolve over time. A response plan for the family/school etc. can be developed by the HCP noting that transport to the ER is not necessary and it should outline what the observers can or should do. Coming to evaluation and proper diagnosis and treatment earlier as opposed to later also improves the likelihood of remission with resultant improvement in function and quality of life. Even if the person does not become 100% free of events, most improve and benefit from the appropriate therapy. With the diagnosis known to the health care system, unnecessary testing, hospitalization, and ER transports can be avoided and the person’s quality of life may well improve.