NeuroCare Brain & Spine Center
By George Morris, MD, Director of the Regional Epilepsy Center, and Jennifer Burgos, Coordinator of Regional Epilepsy Center Surgery Program
Not all seizures are epileptic in origin. When making an initial diagnosis, a doctor will conduct various tests to rule out other causes. Some tests will support the diagnosis of epilepsy, but most of the testing with epilepsy can be normal. People can experience non-epileptic events confused with seizures. This section looks at the non-epileptic events and how they appear similarly to those in a person with epilepsy.
Non-epileptic events are also sometimes referred to as pseudo-epileptic
seizures, pseudoseizures, psychogenic seizures or hysterical seizures. These
episodes are identical to epileptic seizures, but the difference is that
they are not epilepsy. The non-epileptic seizures do not have the brain wave
changes that are seen in epilepsy.
What are non-epileptic events?
Non-epileptic events is not a term that people like to hear. Most people assume that these events are purposeful acts designed to get attention. In medical literature, this is called malingering. In reality, people who have non-epileptic events are not aware of the cause or able to consciously control the events. They are not malingering. They are often experiencing severe emotional stress, and their brain is finding a way to release it, to communicate feelings which they do not feel safe enough or possess the skills to put into words.
It is common for a person who is diagnosed with non-epileptic events to feel that he or she has been written off. The attending neurologist recommends counseling. This suggestion can be very confusing and even upsetting since the person may have already been in counseling and may be unaware of the sources contributing to the events. The first step in healing this condition is for the person experiencing the seizures to come to a positive understanding of the problems lying behind the seizures. Calling them what they are is not enough.
Identifying that seizures are not responding to medication is the most common situation where non-epileptic events are found. The patient presents with continuing seizures despite and often worsened by medications. The patient may be seeking epilepsy surgery or a surgical evaluation. Or, he or she may have presented with frequent seizures and been hospitalized for medications or because medications have caused undue side effects.
One-fourth of patients seeking evaluation for continued seizures turn out not to have seizures but non-epileptic events. The medications did not work because the problem was not seizures. The diagnosis is made using video-electroencephalography (EEG). The continuous recording of a patient's video appearance and brain waves allow a given episode to be defined as having certain EEG characteristics. If no EEG changes occur, then the diagnosis of a non-epileptic event can be made. The absence of these EEG changes, which are seen in epileptic seizures, means that the excessive brain activity seen with seizures is not occurring.
How do non-epileptic events occur?
Non-epileptic events are a behavior. This behavior can be attributed to the emotional make-up of the individual. Stress and profound events in someone's life can present the individual with intense emotions that are overwhelming. The mind can choose with these types of emotions to protect the individual by interrupting their ability to remember the episode. Behaviors which are similar to seizures are good at causing the person and everyone else to focus on the event and not on the person's distress.
The neurologist-turned-psychiatrist Sigmund Freud described an internal person in us called the subconscious and attributed our automatic responses in situations to the subconscious mind. He pictured a compassionate protector that kept us from dwelling on emotionally painful things. The problem is when these behaviors otherwise limit someone and that is when diagnosing them is necessary.
The most important aspect of treating non-epileptic events is treating the factors which cause them to occur. Learning to be aware of and control emotions, tolerate anxiety and communicate effectively regarding one's needs and desires is crucial to mental health. Non-epileptic events are little more than coping mechanisms that are employed because effective strategies for coping and responding to upsetting situations are not in place.
There are many other such coping mechanisms. Focusing on the development of effective coping strategies is much more productive than focusing on diminishing ineffective ones while failing to replace them with something that works.
Identifying the trigger event can be helpful. These may be obvious events earlier in life or may not be easily identified due to their painful memory. People can begin having non-epileptic events as new circumstances around them are reminders of when their trauma occurred. Children reaching the same age, other trauma or distress in their life, can cause these behaviors to begin. The protector Freud described can stop bringing on events if the problem is identified and the distress dwelt with. The subconscious will stop producing the events if there is nothing to protect.
Sharing the diagnosis with the patient
The next step is important. Failure to communicate the importance and meaning of this diagnosis is often the reason people don't get well. The important aspects of communication are that:
It is good news. These events in our experience will stop far more readily than seizures do if patients engage in therapy to treat them. Event freedom was seen in 90% of those who completed 10 sessions of therapy with a specialist in the area of non-epileptic events.
The patient must hear the doctor agree that these are significant events that are limiting and clearly out of the patient's control. Patients otherwise assume that they are being told that these are "all in their head" and they know this is wrong. The next question is always "then what are they?" The events must be described as behaviors that have triggers we haven't found yet but will. These triggers are emotional and psychological.
"You think I'm crazy?" is the look that often comes with the last bit of information. "Crazy" is reserved for those who can not understand right from wrong and can not connect thoughts appropriately; this is not the situation. Compare the setting of this to someone with phobias. The irrational fear of heights can cause someone to sweat, have high blood pressure, a rapid pulse and fast breathing.
These physical changes are not because of "craziness" but some emotional concern about a risk from heights. Maybe the person had a scare of heights as a child, but the treatment for the phobia can be gradually introducing heights. Similar programs work in non-epileptic events.
"Well, that's all for me. See ya." That's what many patients understand the doctor to say when they say "You need to visit a therapist." The sense of abandonment is understandable and so the epilepsy doctor must continue to be available to confirm that the diagnosis is correct and reaffirm its correctness when other doctors with less understanding mislead the patient with statements like "You can just make these go away." If new events occur, then the epilepsy doctor can address them before a problem occurs.
Other frequently asked questions
How can you be sure these are non-epileptic events?
The use of video-EEG to diagnosis non-epileptic events is crucial in most cases. The recording of the typical event with the absence of EEG changes is what confirms the diagnosis. Seizures change the brain waves and this does not occur in non-epileptic events. Patients should be withdrawn from their medications to allow the brainwaves to change. This can only be accomplished in the hospital for reasons of safety. Other recordings in an outpatient setting can work. But if questions remain, then in-patient stays are appropriate. If new events occur, more recordings may be needed to verify that a seizure is not now occurring.
You are calling them events?
Yes. The term seizure is often confusing and the sooner everyone stops using it the sooner the patient will not be treated mistakenly for epilepsy.
Why are these happening now?
The reason why non-epileptic events occur is very individualized, but often surrounds some recent change that re-introduces the setting or feelings someone had when an original problem occurred. This re-introduction can be similar events in the person's life or a child reaching a similar age. The stress to the individual can be very subtle and hard to recognize.
How do I get rid of these non-epileptic events?
First, seizure medications are of little or harmful value to non-epileptic events. The medications often have side effects that limit the patient and so medications need to be withdrawn. Few patients, contrary to older beliefs, have both epileptic seizures and non-epileptic events. Second, the person needs an active way to resist these events. Biofeedback and other treatments can be of help. Lastly, understanding why the prior events in someone's life affect him or her in this way can be very helpful. Remember that the subconscious is trying to protect the patient from memories that are painful. If the person can deal with the memories then there is nothing to protect and the events go away.
Come on, you really think this is crazy, don't you?
No. Many people have internal fears that affect them. Take phobias, for instance. People fear heights even when enclosed where they can come to no harm. Their heartbeat increases, they hyperventilate and they sweat without control. No one considers this crazy, and when it gets in the way it is dealt with in a similar way.
What should I do about these when they do happen?
Supportive measures are the best approach. Reassure the person that they are safe and then move on to other things. The therapy process will take time so not reinforcing these events is necessary early on.
When should a family worry about the events?
Safety is first. Make sure that no one is going to be injured by falling or striking things. If the events seem to have changed, then contacting the epilepsy doctor is the appropriate step. The epilepsy doctor may choose to reassure the patient or re-monitor the events.
Other doctors told me I was faking these. Is that true?
No. Absolutely not. If you are faking these, then the diagnosis is different and you will be treated differently. Remember that many doctors had only a small amount of training in epilepsy and these are very specialized areas they may have no experience with. Look to the experts in an area for the best information.
How can therapy help if I'm not crazy?
Therapy allows a trained individual to determine the stresses that a person has and show them to the patient. The therapist helps the patient discover the significance of these feelings and prior events. Therapy doesn't help crazy people as much because when their thoughts are disordered it is hard to sort out the information they receive. Medications help for some psychiatric conditions, but are not usually necessary in non-epileptic events.