Frequently Asked Questions about Epilepsy & Seizures

Epilepsy (often called a “seizure disorder”) is a neurological condition that causes a person to have recurring seizures. A doctor may diagnose you with epilepsy if you have two or more seizures, it is likely you will have more seizures, and the seizure is not directly caused by another medical condition (such as diabetes or an infection). Epilepsy is a spectrum disorder. The impact of epilepsy varies from person to person. Epilepsy is not a disease, mental illness, or a sign of low intelligence. It is not contagious. Epilepsy is generally a chronic and/or lifelong condition.

Epilepsy is the fourth most common neurological disorder after migraine, stroke, and Alzheimer’s (cite IOM report?) and it is the most treatable disorder of the brain. Epilepsy is more common than Cerebral Palsy, Parkinson’s Disease, Muscular Dystrophy, and Multiple Sclerosis, combined.

1 in 26 people will be diagnosed with epilepsy at some point in their life.

A seizure is a sudden surge of electrical activity in the brain. Seizures can alter awareness, physical movements, emotions, or actions and generally last a few seconds to a few minutes. Seizures can take on many different forms and affect people very differently. There are many different types of seizures but they can be classified into two main categories: generalized and focal. Generalized seizures mean that the entire brain is engaged in the seizure. The person may become unconscious or unresponsive. Generalized seizures may be convulsive or non-convulsive. Types include tonic-clonic, absence, myoclonic, and atonic seizures. Focal seizures involve only certain parts of the brain. The person may remain aware, be confused, have automatic muscle movements, and/or experience changes in taste, sight, smell, or feelings. These seizures are classified by whether or not there is a change in awareness.

Seizures are very common. 1 in 10 people will have a seizure in their lifetime.

For 30% of people diagnosed with epilepsy, there is a known cause such as a brain injury or tumor, infection of the brain, or abnormal brain development.

The remaining 70% of people with epilepsy, the cause is unknown or presumed to be genetic.

Most people with epilepsy have their seizures effectively controlled with today’s treatments, which include a variety of anti-seizure medications, implantable devices, brain surgery, and special diets. Anti-seizure medications are the first line of defense for people with epilepsy and work well for many people. Approximately 30% of people have intractable epilepsy, which is when their seizures are not well-controlled with treatment.

Many kinds of health providers treat epilepsy including family physicians, pediatricians, and nurse practitioners. If the type of epilepsy is difficult to diagnose, or if problems occur such as breakthrough seizures or intolerable medication side effects, a primary care provider may refer a patient to a neurologist or an epileptologist.

A neurologist is a doctor who specializes in treating brain and nervous system disorders. An epileptologist is a neurologist who has advanced training in epilepsy.

People who have seizures that are difficult to control or have additional needs may be referred to an epilepsy center for specialized care. There are two epilepsy centers in the communities served by EAWCNY. The UR Medicine Epilepsy Center [link: https://www.urmc.rochester.edu/epilepsy.aspx] in Rochester, NY and the Epilepsy Clinic [link: https://www.upstate.edu/neurology/healthcare/clinics/epilepsy.php] at Upstate University Hospital in Syracuse, NY.

Psychogenic non-epileptic attacks (PNEA) are sudden episodes of altered sensation, consciousness, or movement that arise from internal emotional factors, or unconscious responses to emotional stress. Sometimes they are also called PNES or psychogenic non-epileptic seizures. PNEA is considered to be a conversion disorder in that it converts psychological distress into physical symptoms. PNEAs are not considered to be epileptic seizures because they do not begin in the brain; and therefore, they are not effectively treated with anti-seizure medications and other epilepsy treatments.

These attacks, however, are very real and they are also treatable, often through psychotherapy. Complimentary and alternative therapies such as yoga and mindfulness can also be helpful when integrated into a therapy treatment plan. It is important to work with a therapist who is familiar with PNEA. EAWCNY can help you find a therapist who is knowledgeable about PNEA or we can educate a therapist you are already working with.

SUDEP is a rare, but fatal side effect of seizures and epilepsy. The exact cause is not yet known, but two common theories are that a seizure can cause an abnormal heart rhythm and/or breathing trouble.

The overall risk of SUDEP for a person with epilepsy is low – less than 1% (.10%). Factors that would increase your risk may include intractable epilepsy, not taking anti-seizure medication as prescribed, or drug use.

If you have never heard of SUDEP, EAWCNY strongly encourages you to have a conversation with your doctor about SUDEP and any risk factors you may have.

Contact Us

EAWCNY has epilepsy educators focused on providing information and support to children, adults, and families dealing with the challenges of epilepsy. Contact the epilepsy educator in your area if you have questions about epilepsy, seizures or wish to learn more about our services.

Western NY/Finger Lakes/Rochester

Michael Radell
Education Coordinator/Camp Director
Phone: (585) 442-4430 ext. 2741
Email: mradell@epiny.org

Central/Syracuse and Southern Tier/Binghamton Regions

Kristen Oderkirk, MSW
Community Educator
Phone: (315) 477-9777 ext. 2906
Email: koderkirk@epiny.org