How to Talk to Your Doctor About Sudden Unexpected Death in Epilepsy (SUDEP)

Sudden unexpected death in epilepsy (SUDEP) occurs when someone with epilepsy dies unexpectedly who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Each year, more than 1 in 1,000 people with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures.

SUDEP Action Day is a global day dedicated to raising awareness of epilepsy deaths.  

Launched in October 2014, it shines a light on the largest cause of death in people with epilepsy, helping empower people through increased awareness. This year, we recognize SUDEP Action Day on October 18, 2023.

In honor of SUDEP Action Day, the Epilepsy Foundation is here to provide you with support, resources, and more to help you feel comfortable talking about this topic with your healthcare team.  

How Do I Talk to My Doctor About SUDEP?

Discussing Sudden Unexpected Death in Epilepsy (SUDEP) with your doctor can be a challenging but crucial conversation. Here are tips to help you talk to your doctor about SUDEP:

Be Prepared: Before your appointment, gather information about SUDEP. Understand what it is, its risk factors, and any concerns you may have. Knowledge will help you ask informed questions.

Choose the Right Time and Place: Make sure you have a dedicated appointment for this discussion. It's important to have the doctor's full attention and adequate time to talk.

Express Your Concerns: Start the conversation by explaining why you want to discuss SUDEP. You might say, "I've been reading about SUDEP, and I'm concerned about my epilepsy." This opens the door to a productive conversation.

Ask Questions: Prepare a list of questions you want to ask, such as:

• "Am I at risk for SUDEP?"
• "What can I do to reduce my risk?"
• "Is my seizure management plan the best it can be?"
• "Should I make any lifestyle changes to lower my risk?"

Share Your Medical History: Be honest about your epilepsy history, including the type of seizures you experience, how often they occur, and whether they are controlled with medication.

Discuss Medication: If you've had issues with taking your prescribed anti-seizure medication consistently, be honest. Your doctor can only help you if they know what's going on.

Lifestyle Factors: Talk about your lifestyle and habits. Your doctor might offer suggestions to reduce risks, such as avoiding triggers or having a consistent sleep schedule.

Listen Actively: Be open to your doctor's advice and recommendations. They may suggest changes in your treatment plan to minimize the risk of SUDEP.

Bring a Support Person: If you're nervous about the conversation or worried you might forget important details, bring a trusted friend or family member with you to help and offer emotional support.

Request Further Information: If you're unsure about something your doctor says, don't hesitate to ask for clarification or request written information to review at home.

Follow Up: After the discussion, make sure you understand any changes in your treatment plan or lifestyle recommendations. If there are new medications or strategies, ask about potential side effects or other concerns.

Make a Seizure Action Plan: Discuss what you and your loved ones should do in case of a seizure, especially during sleep. Having an emergency plan in place can provide peace of mind.

Advocate for Yourself: Remember that you have the right to be an active participant in your healthcare. If your concerns are not adequately addressed, seek a second opinion.

Talking to your doctor about SUDEP is an important step in managing your epilepsy effectively and reducing potential risks. Open and honest communication will help both you and your doctor work together to ensure the best possible care and minimize the risk of SUDEP. 

Additional SUDEP Resources 

This year, we encourage you to use #MySafetyMatters on your personal social media channels to speak up and spread awareness about SUDEP within the epilepsy community. People with seizures and epilepsy deserve to know about SUDEP and how to minimize their risk.

You can also contact the Epilepsy Foundation’s 24/7 Helpline for more information. Our trained information specialists are standing by to answer your questions and provide you with help, hope, support, and guidance.

If you have a loved one who has passed away due to complications from SUDEP, the Epilepsy Foundation offers support for the bereaved. You are not alone, and the epilepsy community continues to honor the memory of those we have lost.