Epilepsy: The Hidden Storm

Epilepsy: The Hidden Storm

Jennifer Gess, Ph.D.

Brain, Dreamstime photo

Epilepsy is one of the oldest documented neurologic conditions, with written records that describe seizures dating back to 4000BC. Many historical figures are suspected to have had seizures (Leonardo Da Vinci, Alexander the Great, Michelangelo, Socrates) and more recently some of our brightest and most creative minds have also lived with Epilepsy (Charles Dickins, Theodore Roosevelt, Alfred Nobel, Agatha Christie, Danny Glover, Neil Young). Currently epilepsy is the fourth most common neurologic disorder in adulthood and the most common childhood neurologic condition. The World Health Organization estimates that 65 million people worldwide have epilepsy with 3 million in the United States. Unfortunately, epilepsy has historically been associated with fear and misunderstanding and at present continues to result in isolation and stigmatization for individuals with poorly controlled seizures.

Epilepsy is diagnosed when an individual has two unprovoked seizures at least 24 hours apart. A seizure is the result of irregularities in the electrical and chemical activity of the brain that result in temporary changes in behavior. Seizures have been described as “electrical storms” in the brain. Seizures vary from individual to individual depending on where in the brain the seizure starts and how widely it spreads. In one person the seizure may simply involve 30 seconds of involuntary isolated muscle spasms during which the individual retains full awareness, while in another the seizure may result in complete loss of awareness and complex behaviors or convulsions. Seizures may also mimic symptoms of psychosis by causing auditory, visual, or olfactory hallucinations. Given the variety of presentations it is not surprising that individuals with seizures may go undiagnosed or misdiagnosed for many years. Seizures can be triggered by traumatic brain injury, congenital malformations, stroke, infection, tumor, genetic syndromes, or alcohol/drug withdrawal; however, for 60% of individuals with epilepsy, there is no identifiable cause, “idiopathic epilepsy.” Treatments may include medications, dietary changes, vagus nerve stimulation, cortical stimulation, or resective surgery.

For most individuals with epilepsy, the seizures are easily controlled through medications and these individuals have limited if any impact from their seizures. However, 30% of individuals with epilepsy have “intractable” or uncontrolled seizures, a condition which carries with it enormous functional, social, and emotional consequences. Individuals with uncontrolled seizures are prohibited from driving and may be limited from independently participating in any activity which could result in harm to themselves or others should they have a seizure (e.g., swimming, climbing, cooking, working with power tools, caring for an infant or young child). As result many individuals are unable to work outside the home and end up being socially isolated due to their transportation limitations and/or fear of having a seizure in public. Depending on the nature and frequency of their seizures, there may be additional cognitive impact including declines in memory, attention, or reasoning that further limit the individual’s functional independence. As result, individuals with intractable epilepsy have a greater incidence of emotional dysregulation stemming from the seizures themselves and from associated functional impact. According to the International League Against Epilepsy, incidence of Depression is estimated to be 17.4% among individuals with intractable seizures and Anxiety is estimated at 22.8% with 25% of these individuals admitting to suicidal ideation.

The role of mental health providers in the comprehensive care of individuals with intractable epilepsy is an important one. While there is no known mental health intervention that can control seizure activity, cognitive behavioral therapy has been shown to be effective in the treatment of the depression and anxiety that can accompany epilepsy. For children or adults with epilepsy who are in school, intellectual/academic evaluations may be important in establishing appropriate classroom accommodations, and school psychologists can serve a critical role in educating teachers and other students about epilepsy. Finally, Neuropsychologists are standard members of epilepsy surgical teams, and conduct specialized evaluations both pre- and post-surgically to assist in the localization and cognitive impact of the seizures, to determine the presence of any potentially complicating emotional or behavioral factors, and to inform follow-up care and post-surgical management. Outside of surgical evaluations Neuropsychologists can also help monitor and intervene around the cognitive and emotional sequelae of seizure activity.

While epilepsy can have a huge impact on some people who live with it, with appropriate diagnosis, treatment, and support most individuals with epilepsy can maintain satisfying, meaningful lives.


Epilepsy Foundation: www.epilepsy.com

World Health Organization: www.who.int

International League Against Epilepsy: www.ilae.org


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