In most epilepsy centers in the U.S., about 25 percent of patients referred for video-EEG evaluation turn out to have something other than epilepsy. The most common diagnosis is "non-epileptic events." Below are some the facts about non-epileptic events.
The following information is not medical advice. We encourage you to talk to your doctor about any questions you have and about your individual case and concerns.
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It is important to understand the difference between epileptic and non-epileptic seizures. Epileptic seizures are caused by spontaneous, highly synchronized abnormal electrical discharges from the brain. Non-epileptic seizures, on the other hand, are not caused by abnormal brain activity. Although they may look like seizures, they seem to be the result of another type of mind-body connection which is not the same as epilepsy. That is why we refer to these events as non-epileptic seizures. Other terms for the same condition are pseudo seizures (because they resemble seizures) or psychogenic seizures (because of the mind-body connection). Most epileptologists prefer the term non-epileptic “events” or “episodes” rather than “seizures.”
There is no simple answer to this question. Every case is highly individual. The best theories suggest that the seizure-like behavior is a form of stress response. Maybe “distress response” is a more accurate concept. Consider the many forms in which the body can respond to physical stress or mental distress: some people get an upset stomach, some get migraine headaches, some get fatigued and want to sleep all the time, some get diarrhea, some get heart palpitations. Everything from asthma to acne, heart attacks to hair loss, probably has some component attributable to stress. In some people, the mind/body may “convert” distress into a response that resembles a seizure.
Some patients have a history of medical illness or accidental head injury which leads them to dread that they may develop complications. For other patients, remote trauma, troubling childhood experiences or an unsatisfactory home situation may produce discomfort which is not addressed or treated. Some patients may have encountered people with epilepsy in their life, at some time in their life and may have an unspoken fear of developing seizures themselves. Distress, fear, anger or resentment may be channeled into an involuntary somatic (bodily) response. Sometimes even suppressed emotions or resentments unknown to the person may elicit such responses. Probably no two patients have exactly the same cause.
Again, everyone is different. Non-epileptic events may result in “blacking out” briefly. There may be hyperventilation, trembling, shuddering or confusion. Visual disturbances, loss of speech, numbness or weakness may also occur. One or more limbs may undergo rhythmic shaking. Significant shaking of all four limbs may resemble a “grand mal” seizure. Some episodes may include eye rolling, stiffening and urinary incontinence. It is uncommon for a person to injure themselves, but it is possible happen. During non-epileptic seizures a person's body may remain limp and unresponsive for several minutes or up to an hour or more.
The diagnosis cannot always be made from a description of the events. If your doctor has never observed one of your episodes, it may be very difficult to classify your seizure type. Even direct observation of a non-epileptic event can be misleading, and an incorrect diagnosis of epilepsy can be made very easily. If there is even a chance that a person may have epilepsy, many doctors will prefer to treat with medication. Sometimes it takes years to make a correct diagnosis. Since non-epileptic events often not do respond to medication, patients may be referred to a comprehensive epilepsy center for diagnostic evaluation.
The best type of evaluation is direct observation or a videotape of the events and simultaneous EEG recordings of brain wave activity during the event. Video-EEG monitoring is carried out and interpreted by epileptologists, who are physicians that specialize in disorders of the nervous system and have sub-specialty training in seizure disorders and EEG interpretation. This type of evaluation is considered the "gold standard" in classifying, both epileptic and non-epileptic seizure types.
Most patients are surprised to learn that the condition is quite common. In a comprehensive epilepsy center, about 15 to 25 percent of the patients who undergo video-EEG monitoring for evaluation of seizures turn out to have non-epileptic events. For example, at the UC San Diego Epilepsy Center, we identify several new patients with non-epileptic events each month.
That’s not the way we like to look at it. Remember that epilepsy is a disorder of the brain (which is clearly in the head!). Non-epileptic events result from a mind-body miscommunication that results in seizure-like behavior so you might prefer to consider that the non-epileptic event is “just in the body” and not the result of brain disease. Non-epileptic events are sometimes a way that the body converts a psychological symptom into a physical symptom, so it may be a "conversion disorder." In general, patients with non-epileptics events are not psychotic or “crazy.”
If you feel an event coming on, try to get to a safe area, such as a sofa, padded chair or carpeted floor. Stay calm and breathe slowly. Observe your own feelings and responses. Don’t panic or try to fight it but take the attitude of a calm observer. Remember that the episode will pass and you will be safe. Calling the paramedics or visiting the emergency room is usually unnecessary. Ask your doctor to help work out a plan for getting through events.
Since your doctor has determined that you do not have epilepsy, you will not benefit from drugs intended to treat epileptic events. If you are already taking anti-epileptic drugs, your doctor will advise you to taper off and discontinue using them. In some case, medication may be continued for a while, depending on the type and dose.
Most neurologists, even epilepsy specialists, are not trained to treat non-epileptic events. The underlying cause may not be obvious and may not need to be determined in order to start the healing process.
A mental health professional who is knowledgeable about non-epileptic events is probably the best person to work with until your events go into remission. He or she may advise you about relaxation techniques, behavioral modifications, biofeedback or individualized methods to help reduce the seizures. He or she may advise long-term therapy to explore more complex psychosocial issues. The good news is that many patients go into remission very quickly once the burden of the fear of epilepsy is removed.
The DMV will have the final word on your driving privileges. Events that involve loss of awareness or loss of motor control for any reason will obviously make driving unsafe. You may have already had your license revoked or restricted. Once your events are in remission, you may wish to reapply for your license. Call or visit your local DMV to obtain the necessary forms. They will need medical information from your doctor to verify your diagnosis and length of remission.
You may want to show this information to the people close to you, especially if they are caring for you when you have events. If you or they still have questions, your doctor can help to better explain your particular condition.
Yes. Non-epileptic events are not considered voluntary. People who have them are not “faking it” or “putting on an act.” While it is possible for a person to willfully imitate a seizure for some sort of personal gain, money or attention, this is far less common and such patients are usually given a diagnosis of malingering.