Ways to Lower SUDEP Risks If You Are Living With Epilepsy

Why discussing SUDEP with your doctor matters

With one child at home and another on the way, Jason knew it was time to take the next step in his epilepsy treatment. His medications were becoming less effective at seizure control, and he was struggling with drug side effects and fatigue.

During Jason’s comprehensive epilepsy diagnosis and tests for additional options to treat drug-resistant epilepsy, his neurologist also raised the risk of SUDEP, or sudden unexpected death in epilepsy. Each year, more than 1 in 1,000 people with epilepsy die from SUDEP¹. The rate is higher – as high as 1 in 150 – for those with uncontrolled epilepsy^2,3.

Having a conversation about SUDEP with his doctor played a role in his decision to pursue the RNS System says Jason, who was teaching English in Pennsylvania at the time and later moved to Florida. “If it helped prevent seizure activity, it could perhaps give me more time with my kids.”

As the leading cause of death for people with uncontrolled seizures, SUDEP is a devastating loss for friends and family, as well as for health teams. But not all doctors treating epilepsy mention SUDEP during appointments, at least not early on — even at specialized centers.

It’s not from lack of empathy or concern, according to a 2012 survey published in the journal Epilepsy Behavior. Doctors worried about instilling more anxiety and fear among patients about SUDEP when there were still too many unanswered questions, and not enough treatment options.

Much about SUDEP still remains unknown, despite ongoing research. More is known about its risk factors. There are also a greater number of approved epilepsy treatments, including neurostimulation devices.

Discussing SUDEP with your doctor may feel daunting. But it could help lower your risk and protect your health. Prepare for the conversation by learning more about SUDEP.

What is SUDEP, exactly?

Sudden unexpected death in epilepsy is:

• Not connected to underlying health issues
• Unrelated to an injury, an accident such as drowning, or suicide (learn more about epilepsy and mental health)
• Not tied to a status epilepticus emergency — a seizure or series of seizures lasting more than 30 minutes with no relief

SUDEP often occurs overnight during sleep. It’s typical for a seizure or unusual brain activity to take place before SUDEP, though that’s not always the case.

Researchers know that seizures can occasionally trigger unusual (and sometimes dangerous) heart rhythms called arrhythmias. But they’re still trying to determine why SUDEP happens, and if there’s a connection with the heart.

Other theories include seizures stopping breathing long enough in sleep to cause death. Or seizures interfering with brain regions tied to heart and lung control. There could be more than one reason, or overlapping reasons.

Risk factors for SUDEP

SUDEP can occur across epilepsy types, researchers say. It can happen with focal seizures or generalized seizures involving the whole brain.

Having drug-resistant epilepsy (DRE) increases the risk of SUDEP. One study estimated DRE can increase risk of SUDEP by 150%, and the increased risk among those considered to be surgical candidates could increase by 275%⁴. SUDEP risk factors may include:

• Uncontrolled seizures: SUDEP can happen even when treatments effectively manage epilepsy. But the rates are much higher when seizures remain uncontrolled, especially if they’re frequent⁴.
• Not taken medications as prescribed: A study of the North American SUDEP Registry (NASR) found only 37 percent of people affected by SUDEP had taken their last dose of medication as prescribed. Some people forgot, while others lowered doses on their own to reduce side effects⁵.
• Generalized tonic-clonic (GTC) seizures: People are more likely to experience SUDEP if their seizures affect the whole body (convulsive or grand mal seizures). The risk appears higher for recent or frequent GTC seizures, particularly if they take place at night⁴.
• Having epilepsy for a longer time: While rare, SUDEP can happen even when epilepsy has only recently begun. The risk becomes higher, though, the longer you live with epilepsy — and the younger you were when it began⁴.

Other potential risk factors include sleep deprivation (often from seizures) and using alcohol or recreational drugs. Researchers are still exploring the role inherited genetics may play.

Lowering your risk of SUDEP

The best way to lower your SUDEP risk is by finding effective treatment to reduce the frequency and severity of seizures. It helps to work with a neurologist experienced with epilepsy — especially an epileptologist, or a neurologist with additional training.

Your doctor may prescribe new anti-seizure medications, or suggest lifestyle and other changes. Or, if your epilepsy is considered drug resistant (i.e., when two or more medications don’t work), you can work with a specialist to find other options. Doctors may be able to remove the source of seizures during surgery or recommend a neurostimulator such as the RNS System.

In addition to exploring treatment options, you can ask your doctor about other ways to lower your SUDEP risk, including:

• Encouraging caregivers to get CPR training
• Establishing sleep monitoring — either by caregivers or with devices
• Getting enough sleep
• Having your heart checked
• Identifying and avoiding seizure triggers
• Limiting alcohol and avoiding recreational drugs
• Taking medication as prescribed, with changes only at the direction of your doctor

RNS System data on SUDEP

Among neurostimulators, only the RNS System continuously watches brain activity for seizures, directly targeting the source with therapy as needed*. It also records seizure activity for analysis. (Learn more about the differences between RNS, VNS and DBS for neurostimulation.)

A 2018 study in the journal Epilepsia reviewed data from RNS clinical trials and in the years following its approval. Researchers found a reduction in SUDEP for people using the RNS System compared with people who tried more medication².

Another study, published in 2020, evaluated the long-term treatment of patients who received the RNS System. This study found the SUDEP rate for patients treated with the RNS system was 2.8 per 1,000 patient-stimulation years – significantly lower than comparative rates⁶.

Among neurostimulators, only the RNS System continuously watches for seizures, directly targeting the source with therapy as needed*. It also records seizure activity for analysis. (Learn more about the differences between RNS, VNS and DBS for neurostimulation.)

Taking the next step

Conversations about death are always difficult. But by talking with your doctor about your individual SUDEP risks, you can identify preventive steps best suited to your needs.

After starting the RNS System and adding a medication in a clinical trial, Jason saw his seizures drop dramatically — from a few seizures a week to a few seizures a month.. The changes allowed him to choose to stay home with his children while his wife worked, without worry.

“It was a huge confidence boost,” he says, urging people to get help at a comprehensive epilepsy center. “Ask the doctor all the questions you have. Talk to your family and friends to see what questions they have. It’s been a long journey to get here, but I feel like I’m in a good place now.”

Sources

1. SUDEP FAQ: Epilepsy Foundation
2. Sudden unexpected death in patients treated with brain-responsive neurostimulation: Epilepsia
3. Sudden unexpected death in epilepsy: current knowledge and future directions: The Lancet. Neurology
4. Risk assessment for sudden death in epilepsy: Frontiers in Neurology
5. SUDEP in the North American SUDEP Registry: Neurology
6. Nine-year prospective efficacy and safety of brain-responsive neurostimulation for focal epilepsy