In most U.S. epilepsy centers, about 25-40% percent of patients referred for video-EEG evaluation turn out to have something other than epilepsy. The most common diagnosis is called "non-epileptic spells."
What are non-epileptic spells? What causes non-epileptic spells? What do non-epileptic spells look like? How are non-epileptic spells diagnosed? Are non-epilepstic spells common? Is it just in my head? What should be done when I have one of my spells? What about medication? Who treats this disorder? Can I drive now? What should I tell my family and friends? Is there anything else I should know?
What are non-epileptic spells? 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 cause 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 spells 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 “spells” or “episodes” rather than “seizures.”
What causes the non-epileptic spells? There is no easy answer for 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 better 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, from 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 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 have been exposed, at some time in their life, to persons with epilepsy. They may have an unspoken fear of developing seizures themselves. Distress, fear, anger or resentment may be channeled into an involuntary somatic (referring to the body) response. Sometimes even suppressed emotions or resentments unknown to the person may elicit such responses. Probably no two patients have exactly the same cause.
What do non-epileptic spells look like? Again, everyone is different. Non-epileptic spells may resemble “blacking out” briefly. There may be hyperventilation, trembling, shuddering or confusion. Visual disturbance, loss of speech, numbness, or weakness may occur. One or more limbs may undergo rhythmic shaking. Shaking of all four limbs on a grand scale may resemble a “grand mal” seizure. Some episodes may include eye rolling, stiffening, and urinary incontinence. It is uncommon for person to injure themselves, but it can happen. One of the most common forms of non-epileptic seizures is simply limp unresponsiveness for several minutes to an hour or more.
How are non-epileptic spells diagnosed? The diagnosis cannot always be made from a description of the spells. If your doctor has never observed a spell, it may be very difficult to classify your seizure type. Even direct observation of a non-epileptic spell 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. Sometime it takes years to make the correct diagnosis. Since non-epileptic spells tend not to 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 spell and simultaneous EEG recordings of brain wave activity during the spell. Video-EEG monitoring is carried out and interpreted by epileptologists, who are physicians specializing in disorders of the nervous system, with sub-specialty training in seizure disorders and EEG interpretation. This type of evaluation is considered the ‘gold standard’ in classifying seizure types, both epileptic and non-epileptic.
Are non-epileptic spells common? Most patients are surprised to learn that the condition is quite common. In a comprehensive epilepsy center, about 15 to 25% of the patients who undergo video-EEG monitoring for evaluation of seizures turn out to have non-epileptic spells. For example, at the UCSD Epilepsy Center, we identify several new patients with non-epileptic spells each month.
Is it “just in my head?” 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 spells result from a mind-body miscommunication that results in seizure-like behavior. You might prefer to consider that the non-epileptic spell is “just in the body” and not the result of brain disease. Non-epileptic spells are sometimes a way the body converts a psychological symptom into a physical symptom. This may be a "conversion disorder." In general, patients with non-epileptics spells are not psychotic or “crazy.”
What should be done when I have one of my spells? If you feel a spell coming on, try to get to a safe area: 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” but rather take the attitude of a calm observer. Remember that the spell will pass and you will be safe. Calling the paramedic or visiting the emergency room is usually unnecessary – ask your doctor to work out a plan with you for your “getting through a spell.”
What about medication? Since your doctor has determined that you do not have epilepsy, you will not benefit from drugs intended to treat epileptic spells. If you are already taking antiepileptic drugs, your doctor will advise you about tapering and discontinuing them. In some case, medication may be continued for awhile, depending on the type and dose.
Who treats this disorder? Most neurologists, even epilepsy specialists, are not trained to treat non-epileptic spells. The underlying cause may not be obvious, or even necessary to start the healing process.
A mental health professional who is knowledgeable about non-epileptic spells is probably the best person to work with you until the spells go into remission. He or she may advise you about relaxation techniques, behavioral modification, biofeedback, or individualized methods to about 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 fear of epilepsy is removed.
Can I drive now? The DMV has the final word on your driving privileges. Spells 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 spells are in remission, you may wish to apply to regain 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.
What should I tell my friends and family? You may want to show the people close to you these FAQs, especially if they are caring for you when you have your spells. If you or they still have questions, your doctor can help to explain your particular situation.
Is there anything else I should know? Yes. Non-epileptic spells are not considered voluntary. They are not the same as “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.
Non-epilepticseizures.com"We want this web site to be a starting point for those with Nonepileptic Seizures and their family members to get the help they need. We want you to know that you are not alone and that there is hope. Sometimes patients diagnosed with nonepileptic seizures feel abandoned by health care providers and others. We very much want that to end. As a sufferer of nonepileptic seizures and a spouse we know how difficult it is. We hope that you will find this to be a place of learning and healing." -from non-epilepticseizures.com
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