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Sudden unexpected death in epilepsy (SUDEP): What you need to know

SUDEP — sudden unexpected death in epilepsy – describes an epilepsy death for which no other cause is identified. But how common is it?

Dawn Eliashiv, M.D., professor of neurology and co-director of the UCLA Seizure Disorders Center, answers questions about SUDEP for the 3.4 million Americans living with epilepsy.

Q. What causes SUDEP?

  1. One in 1,000 people with epilepsy will experience SUDEP. While we don’t know exactly how SUDEP causes death, we suspect there is a combination of heart, lung and brain factors. These factors — separately or in combination — could play a role:
    1. Brain: Vital parts of the brain control breathing, plus heart and other life-sustaining functions. Seizures could interfere with or suppress the brain’s control of these processes.
    1. Heart: Too-fast or too-slow heart rates, or even cardiac arrest, could occur with seizures.
    1. Lung: Seizures can cause apnea – momentary lapses in breathing. A lack of oxygen or a blocked airway during a seizure is often life-threatening.

Q. Who is at risk for SUDEP?

A. There’s a lot we don’t know. But we do know the two most significant risk factors for SUDEP are:

  • Specific seizure type: Patients with generalized convulsive (tonic-clonic, also known as grand mal) seizures are more likely to experience SUDEP.
  • Uncontrolled epilepsy: SUDEP occurs more frequently in people who have seen no improvement after using two or more medications or whose epilepsy is not well-controlled. One in 200 people with uncontrolled epilepsy will experience SUDEP.

We also suspect these risk factors play a part in SUDEP:

  • Brain wave activity: Studies have shown that people with suppressed brain wave activity on EEG (a test that detects electrical activity in the brain) following a generalized seizure are more at risk for SUDEP.
  • Alcohol use: Drinking alcohol could impair the brain functions responsible for heart and lung processes.
  • Missed medications: Forgetting to take doses of epilepsy medications is linked to SUDEP.
  • Prone position: People may die from SUDEP if they are prone (on their belly) when a seizure starts.
  • Seizure years: People who start having seizures at a young age or have lived for many years with epilepsy are at higher risk.

Q. Is it possible to prevent SUDEP?

A. The best way to prevent SUDEP is to avoid seizures — and seizure control requires taking, as prescribed, medications that control epilepsy. If you can’t achieve seizure control with your current medications, consider having a consultation at a comprehensive epilepsy center. 

Q. Why should someone seek epilepsy treatment at a comprehensive center?

A. Fewer than 1% of patients with drug-resistant epilepsy are referred to epilepsy centers — many have had seizures for more than 20 years. Comprehensive epilepsy centers offer a variety of treatments such as newer antiseizure medications and ketogenic diets, plus options such as:

Wearable devices

Wearable devices help monitor movements, changes in heart rate and other signs of seizure activity. The devices can send alerts to patients and their caregivers, essentially warning them a seizure may occur.

Neurostimulation

There are different types of neurostimulators, including:

  • Vagus nerve stimulation (VNS): VNS uses a small device implanted in the chest with a wire that wraps around the vagus nerve in the neck. VNS controls seizures by sending mild electrical energy to the brain through the vagus nerve.
  • Responsive neurostimulation (RNS): RNS works like a pacemaker for the brain. A tiny neurostimulator with seizure detection capabilities is placed under the scalp. It’s connected to two electrodes placed over regions of the brain where seizures are coming from. The device constantly monitors to detect unusual brainwave activity that could lead to a seizure. It uses bursts of electrical stimulation to help the brainwaves return to normal.

Laser ablation  

Laser interstitial thermal therapy (LITT) uses a beam of targeted heat to destroy the portion of a person’s brain that causes seizures.

Epilepsy surgery

Epilepsy surgery is available for some patients with epilepsy that do not respond to medications. A surgeon removes the section of the brain where seizures originate. Surgery treatment may provide some people with the best chance for a seizure-free life.

Another type of epilepsy surgery is deep brain stimulation (DBS). With DBS, a neurosurgeon places two electrodes in a deep region of the brain called the thalamus. The electrodes deliver electrical impulses to the brain to reduce seizure activity.

If you need support and care for epilepsy, contact UCLA’s Epilepsy Program. UCLA has the highest level of certification (Level 4) from the National Association of Epilepsy Centers. The UCLA Seizure Disorder Center uses a multidisciplinary approach to treating epilepsy and offers multicenter clinical trials for SUDEP.


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