Functional (non-epileptic) seizures

Functional seizures go by several names: non-epileptic seizures, dissociative seizures, or PNES (psychogenic non-epileptic seizures). They can involve shaking, blacking out, staring, or falling and being unresponsive — episodes that look very much like epilepsy. The difference is what causes them. Epileptic seizures come from sudden abnormal electrical discharges in the brain. Functional seizures come from a temporary problem in how the nervous system is working, a process sometimes described as dissociation, a bit like a trance state.

The most important thing to know: these seizures are real and involuntary. The person is not faking, imagining, or choosing them. A diagnosis of functional seizures is an explanation, not a dismissal. They are also far more common than most people realize — neurosymptoms.org, a site created by neurologist Prof. Jon Stone, notes that nearly half of people brought to the hospital with suspected epilepsy turn out to have functional seizures. Many people carry an epilepsy diagnosis for years, and may take epilepsy medication, before the correct diagnosis is made. The specialists behind nonepilepticseizures.com note it can take an average of seven years to reach an accurate diagnosis, which delays the right treatment.

Getting the diagnosis right takes expertise. According to nonepilepticseizures.com, the gold standard is video-EEG monitoring — recording brain activity and video at the same time during an event — which is available through specialized epilepsy programs. neurosymptoms.org also notes that even a video of an episode recorded on a phone can help a specialist a great deal. Because functional seizures and epilepsy can look alike, and because some people are found to have another condition as well, this is a conversation to have with your care team.

There is real reason for hope: functional seizures are treatable for many people. Treatment usually is not a pill. Instead, it focuses on understanding the diagnosis, learning to recognize the warning symptoms many people feel before an episode, and building skills — like grounding and distraction techniques, often taught by a psychologist — to regain control. Many people find that as they learn about their episodes, warnings get longer, some episodes can be headed off, and attacks become less frequent.

The materials below explain functional seizures and their treatment in plain language, help you or your family understand what to do during an episode (stay calm, give the person space, never put anything in their mouth, and wait for it to settle), and connect you with communities of people living with the same condition — including virtual peer support groups specifically for functional seizures.