Patty Shafer, RN, MN
Epilepsy.com Resource Specialist
Recent articles have talked about psychogenic seizures, or seizures that are not epilepsy. This can be a confusing topic and it may be difficult to understand what these events are, and what they are not, and how to get the right help. This week's column addresses some frequently asked questions. Please remember that just like epilepsy, there is no one treatment that is best for everyone. People should talk to their treating doctors or health care practitioners about what this means for them and how to get the care they need.
Nonepileptic seizures – are seizures or events that are not associated with changes in electrical discharges in the brain that cause epilepsy seizures. Nonepileptic events may be caused by a variety of conditions, both physical and emotional. In order to diagnose these events, EEG telemetry needs to be done to see whether EEG abnormalities are seen during the events. If not, then further testing may be needed to see if there are other medical problems that could be causing the events.
Psychogenic seizures are nonepileptic events that are thought to be caused by psychological problems. Testing is first done to make sure that the events are not caused by electrical activity in the brain. Then other medical problems are ruled out and possible psychological causes considered. There is much controversy about what term to use to describe these seizures. In the past, some people used the term pseudoseizures because the events looked like epilepsy seizures. However, this term can be easily misinterpreted. Currently, the terms nonepilepsy seizures with psychological causes, nonepileptic events or seizures, or psychogenic seizures are all used interchangeably. What do you think is the best term?
The answer to this question is absolutely yes! The events are really happening and affecting a person's health and daily life! Just because the reason for the events is not known yet, doesn't mean they are not real. With nonepileptic psychogenic seizures, the person often is not aware of underlying pyschological factors that may be affecting them, until they have undergone further testing and treatment.
However, situations can occur when a person is consciously aware that the events they are having are not seizures and the term 'malingering' may be used. This means that the person 'intentionally' has an event or 'exaggerates a physical or psychological symptom' for personal gain reasons. This is not the same as psyhogenic or nonepileptic seizures!
EEG telemetry (a test to record a person's electrical activity of the brain at the time of the events) is critical to determine if the events are seizures or not. Sometimes, however, this testing may not give clear results and may need to be repeated at different times. Diagnosing nonepilepsy psychogenic seizures doesn't stop with EEG telemetry. If psychological causes are suspected, an evaluation with a psychiatrist is needed to sort out possible causes and suggest ways to treat this.
The EEG testing usually needs to be done in a hospital that has the capability to record seizures on video as well as the EEG and lower or change medicines if needed. This testing is found at specialized epilepsy centers. Psychiatric evaluations may be done or started in the hospital, but often are completed in outpatient or office settings after the psychiatrist has had a chance to meet with the person and their family and review findings from other testing.
Some people with psychogenic seizures may need to continue seizure medicines if they also have epilepsy seizures, or because the seizure medicine also may be treating other medical or mood problems. It's very important for people NOT to stop any medicines without advice from their doctors treating the seizures.
It's important to realize that a diagnosis of nonepilepsy seizures with a psychological cause can be a good diagnosis! Treatments are available, many of which can work quite well. In fact, if a treatment can be found to correct or treat the cause of these events, people have a much better outcome than just continuing seizure medicine, since the seizure medicine isn't geared to treating the cause of these events!
There are a variety of ways that psychogenic seizures may be treated.
Medications to help manage mood or other psychological problems may be needed. These are usually best monitored by a psychiatrist or mental health practitioner licensed to prescribe and manage these medicines.
Individual therapy or counseling - meetings with a counselor (for example social worker, psychologist, psychiatrist, or other licensed therapist) is important to help sort out possible causes of the seizures, learn new ways of coping and treating the events, and address how these are affecting the person's quality of life. Counseling may include education, talking therapy about emotional factors, family counseling, or behavioral counseling.
Cognitive behavioral therapy (CBT) - CBT is the short hand name of therapy that aims to change a person's thoughts and perceptions about a problem, (in this case the nonepilepsy seizures) and learn behavioral strategies on how to manage them. Research using CBT has shown this to be quite helpful in controlling these events.
Once a person is diagnosed with nonepilepsy seizures, it's very important to learn more about them. Ideally, the epilepsy team who does the EEG monitoring will explain the diagnosis and connect people with appropriate resources. However, sometimes this doesn't happen in the best way, or the results of the testing aren't ready before the person is discharged. So the first step in getting more information is making an appointment with the epilepsy team who has done the testing and learn all you can about what testing was done, what was found and what that means.
Hearing the diagnosis doesn't change the outcome however! People must take the next step of meeting with the right professionals to get the right help. Ask the epilepsy team for referrals to professionals with experience in nonepilepsy seizures and psychological issues. There are also listings of mental health professionals on the web and through professional societies.
For more information about these events and treatment approaches, watch the videos in the epilepsy.com Media Library!
I hope this information helps people understand what these events are and what they are not. It's just a starting point and each person may have a different journey as they find the right help. If you have more questions and concerns, please share them in our Community Forums!
Patty O. Shafer
by Patricia Osborne Shafer RN, MN
Resource Specialist, epilepsy.com
Last Reviewed: 1/16/2013
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