We periodically get asked questions about “fake seizures.” They have also been called “pseudo-seizures” but are now more accurately called non-epileptic seizures or psychogenic non-epileptic seizures (PNES). Some also call them paroxysmal non-epileptic seizures (also PNES). An overview video is available on the Epilepsy Foundation website .png "opens in new window")
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When one witnesses the event, it has the appearance of a seizure. However, further evaluation (described below) reveals that the event does not have the corresponding abnormalities on the electroencephalogram (EEG).
Families and staff generally describe the person having what appears to be a seizure. Symptoms may include involuntary movements, lack of awareness of his/her surroundings, shaking movements, stiffness, and others. Other descriptions reported by families and staff of individuals with Down syndrome include:
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“He has fainting spells/seizures that occur infrequently and only when going to a new event or with a new attendant.”
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“A couple of times, she has been transferred by ambulance to the ER where CAT scans and labs all check out normal.”
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“It appears that he is seeking attention.”
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“She is not a behavior problem at all but to me she seems to have substituted these ‘episodes’ for the other behavior she exhibited as a child.”
A traumatic event (including some that result in post-traumatic stress disorder), depression, and anxiety can be associated with the onset of PNES.
In an article called The Truth About Psychogenic Nonepileptic Seizures from the Epilepsy Foundation, Selim Benbadis, MD is quoted: “PNES is a real condition that arises in response to real stressors. These seizures are not consciously produced and are not the patient’s fault.”
Diagnosing PNES can be difficult, particularly because the events look so much like epileptic seizures. According to the Epilepsy Foundation , as many as 20-30% of individuals (without Down syndrome) seen in some epilepsy centers who have drug-resistant seizures (seizures not responsive to anti-seizure medications), may actually have PNES rather than epileptic seizures.
The diagnosis can be clarified by doing video EEG monitoring. In this test, the person undergoes an EEG, which involves attaching wires to the person’s head with sticky pads. During the EEG, the person is video recorded. The results of the EEG and the video footage are used to assist in the diagnosis. It can indicate if an event is consistent with a non-epileptic seizure if the person experiences an event that looks like a seizure but there are no abnormalities on the EEG that are consistent with a seizure. Our Resource Library has a visual for individuals with Down syndrome called Getting an EEG that explains the test.
Treatment for PNES includes:
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Reassuring the individual that these events are not epileptic seizures.
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Addressing psychological concerns and treating mental health problems (e.g., anxiety, depression).
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Eye movement desensitization and reprocessing (EMDR).
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According to the Epilepsy Foundation, “EMDR integrates elements of many psychotherapies including psychodynamic, cognitive behavioral, interpersonal, experiential, and body-centered therapies. During EMDR the client attends to past and present experiences in brief sequential doses while simultaneously focusing on an external stimulus. Then the client is instructed to let new material become the focus of the next set of dual attention. This sequence of dual attention and personal association is repeated many times in the session.”
Less is known about psychogenic non-epileptic seizures in people with Down syndrome. Since epileptic seizures are more common in individuals with Down syndrome , PNES may be overlooked at times. Many individuals with Down syndrome cannot report subjective feelings of psychological illness or stress. Therefore, an individual with Down syndrome may be misdiagnosed with epileptic seizures if other symptoms of PNES are not recognized. However, it is not clear that this is a significantly common problem in people with Down syndrome or whether it is as common in people with Down syndrome as compared to people without Down syndrome. Further study needs to be done to better understand this condition in people with Down syndrome.