Epilepsy

Epilepsy is a disorder of the central nervous system resulting in seizures that may have no apparent cause and that happen more than once. More than half the time, the cause of epilepsy is unknown. When the cause can be determined, it is most often due to head injury, infections or a tumor in the brain, a stroke, degenerative diseases such as Alzheimer's disease, substance abuse or hereditary factors. About 50 percent of children outgrow their epilepsy by the time they become adults.

The Centers for Disease Control and Prevention (CDC) estimates that 215,000 people in New York are living with active epilepsy, a disorder of the central nervous system that results in seizures. Other studies suggest that close to 9,000 individuals are newly diagnosed every year in the State.

What are the risk factors for epilepsy?

More than half the time, the cause of epilepsy is unknown. When the cause can be determined, it is most often due to head injury, infections or a tumor in the brain, a stroke, degenerative diseases such as Alzheimer's disease, substance abuse or hereditary factors. About 50 percent of children outgrow their epilepsy by the time they become adults.

How is epilepsy diagnosed?

A physician will consider a patient's history, an examination of the brain and nervous system, blood work and other tests in making a diagnosis of epilepsy. Eyewitness accounts of a patient's seizures may also help a physician determine the type of seizures involved. The electroencephalograph, or EEG, is the most commonly used test in diagnosing epilepsy. An EEG provides a recording of electrical activity in the brain. Some patterns of activity are unique to particular forms of seizures. In some situations, physicians may also use other kinds of tests to find what is causing the seizures.

What types of treatments are available to control epilepsy?

Epilepsy often can be treated by medications and, sometimes, surgery. Drug therapy is by far the most common, and is usually the first to be tried. Most people achieve good seizure control on one or more of the medications currently approved for the treatment of epilepsy. Surgery has been an accepted form of treatment for over 50 years when medicines fail to prevent seizures. Neurologists, pediatric neurologists, pediatricians, neurosurgeons, internists and family physicians all provide treatment for epilepsy. Specialized care for people whose seizures are difficult to control is available in large medical centers, neurological clinics at university and other hospitals, and from neurological specialists in private practice.

Sudden Unexpected Death in Epilepsy (SUDEP)

SUDEP stands for Sudden Unexpected Death in Epilepsy. It's the term used when a person with epilepsy dies without warning signs and no cause of death can be found. People with epilepsy and their families should know what SUDEP is and ways to reduce the risk of SUDEP.

New York State law, effective November 15, 2022, requires physicians, nurse practitioners and physician assistants to educate patients about SUDEP if:

  • the patient has been diagnosed with epilepsy and is at high risk of SUDEP, and
  • the provider has primary responsibility for the treatment and care of that patient for epilepsy

But this is more than a legal requirement for providers. Information from a trusted medical source helps to combat fear and can empower patients. Growing evidence shows that patients would rather learn about SUDEP from their healthcare provider at the time of epilepsy diagnosis or very soon thereafter, rather than search for information on their own. Providers can serve as the most trusted, reliable source of initial information for their patients.

These fact sheets can help patients and providers learn more about SUDEP:

SUDEP Questions and Answers:

Which providers does this new law apply to?

The SUDEP law requires physicians, nurse practitioners and physician assistants to educate patients about SUDEP if: (1) the patient has been diagnosed with epilepsy and is at high risk of SUDEP, and (2) the provider has primary responsibility for the treatment and care of that patient for epilepsy.

I am a provider covered by the SUDEP law. How do I know if a patient is at high risk of SUDEP and should be given the patient fact sheet?

Providers must exercise their professional medical judgment when determining whether a patient is at high risk of SUDEP, taking into consideration the list of SUDEP risk factors included in the provider fact sheet (PDF). A patient may not be identified as high risk for SUDEP at the time of epilepsy diagnosis but could be considered high risk at a later time during treatment. For example, if a patient has only recently started to be non-compliant with medications.

I am an emergency room provider. If someone comes in for an epilepsy-related emergency condition, do I have to give them the SUDEP fact sheet?

Treatment in an emergency situation is not covered by the SUDEP law.

I am a provider in an inpatient hospital setting and occasionally see patients who experienced a first-time seizure and were admitted for further workup (such as prolonged EEG monitoring). Am I covered under this law?

The law applies to health care practitioners who have primary responsibility for the treatment and care of the patient for epilepsy. The law does not distinguish between inpatient and outpatient settings, but rather focuses on who is the patient's primary care provider for epilepsy conditions. You (with the assistance of your hospital's legal counsel) will need to make a case-by-case determination as to whether it is appropriate to educate a patient referred for inpatient follow-up regarding SUDEP, or whether an outside provider will assume this responsibility. This fact-specific determination will depend in part upon whether you anticipate follow-up appointments with this patient or whether you are connecting the patient with an outpatient provider for ongoing, continued care. Please note that nothing in the SUDEP law prohibits a non-covered provider from educating a patient regarding SUDEP.

The provider and patient fact sheets created by DOH include contact information for specialty epilepsy centers. How should providers identify which patients to refer to specialty treatment centers?

Most patients diagnosed with epilepsy may be seizure free after establishing a medication regimen and may not need to visit a specialized treatment center. Providers must exercise their professional medical judgment to assess which patients would benefit from connection with a specialty treatment center. Along with the patient's individual medical history and other resources, providers should refer to guidelines from the National Association of Epilepsy Centers (NAEC), which state: "Patients who are not responding to standard medical therapy who have either persistent seizures or side effects should be referred to an epilepsy specialist, known as an epileptologist or to a specialized center. Epilepsy centers provide a comprehensive team approach to the diagnosis and treatment of epilepsy. The goal is to control or at least reduce the frequency of seizures and side effects for patients."

I would like to suggest other resources or organizations to include on this webpage. Where can I send that information?

Please send this information to SUDEP@health.ny.gov

Who developed these fact sheets; were providers included?

The patient and provider fact sheets were developed in consultation with stakeholders representing the medical community as well as epilepsy advocacy groups. These stakeholders included:

  • Medical Society of the State of New York (MSSNY)
  • American Epilepsy Society (AES)
  • Northwell Health's Epilepsy Department
  • Albany Medical Center's Child and Adult Neurology Divisions
  • SUNY Stony Brook Medical Center's Epilepsy Division
  • North Suffolk Neurology
  • The Epilepsy Foundation of Northeastern New York
  • The Epilepsy Coalition of NYS
  • EPIC Epilepsy Foundation of Long Island
  • Empowering People's Independence

How can I help my patients learn more about SUDEP?

You should first review the Provider Fact Sheet (PDF) developed by DOH to familiarize yourself with SUDEP, including who is at greatest risk. If you are a provider covered under the SUDEP law, then you are legally required to provide patients who have been diagnosed with epilepsy and are at high risk of SUDEP with the Patient Fact Sheet (PDF). In addition to these two resources, you can also direct appropriate patients to the other resources on this page and detailed in the patient fact sheet. These include both national and regional organizations with expertise in epilepsy and SUDEP and can provide in-depth, reliable information to patients seeking further information about SUDEP.

If a resident of a nursing home or other congregate residential setting is accompanied to a medical appointment by a health care proxy or facility staff member who is unfamiliar with their case, is the provider required to educate the health care proxy or facility staff member?

While there is no legal requirement to educate the health care proxy or facility staff member, it would be in the best interest of the patient and a best practice to share and discuss the educational materials with them.

I have other questions or comments about the SUDEP informational materials posted here.

Any other questions or suggestions regarding either the Patient Fact Sheet (PDF) or the Provider Fact Sheet (PDF) can be directed to SUDEP@health.ny.gov

Epilepsy and SUDEP Resources

The organizations below can provide support and resources related to SUDEP.

If your organization would like to be considered as an addition to the list of SUDEP resources, please email SUDEP@health.ny.gov

Epilepsy Specialty Centers

The National Association of Epilepsy Centers (NAEC) can help you find an epilepsy specialty center near you. Search by state or zip code at: Find an Epilepsy Center

Regional Epilepsy Organizations in NYS

National Epilepsy Organizations and Resources