The Epilepsy Foundation's SUDEP Institute is motivating people with epilepsy to strive for their best possible seizure control to reduce their risks, speak with their health care team about SUDEP, and use our new dedicated #AimForZero hashtag to drive discussions.
While the cause of SUDEP may be unknown, there are ways to lessen your risk.
- First, take every step possible to control your seizures!
- Second, know your risks! To do this, you and your doctor and health care team need to talk about it!
- Talking about epilepsy can be hard to do. People may feel that others won’t understand seizures and epilepsy. Or maybe you are afraid of being treated differently by others? Unfortunately stigma about epilepsy still exists.
- Talking about SUDEP can be even harder. Who wants to think about the risk of dying? How do you know if it even pertains to you or what questions to ask?
- All of us, whether we have epilepsy or not, should know our health risks so we can know what we face and how to improve our health. Knowing that you or a loved one is at very low risk of SUDEP can be just as powerful as knowing that the risk is high.
Here’s a few thoughts on talking about SUDEP.
Why has my doctor never talked to me about SUDEP?
Talking about SUDEP is hard for doctors, nurses and other health care providers to do too. One reason is that there is still a lot we don’t know about SUDEP. We know about some risks – such as poor seizure control, seizures at night, and age – but there’s a lot that we are not sure about. Here are a few reasons why health care professionals may have difficulty talking about SUDEP.
- They may not want to bring it up unless you are at high risk.
- They may not know what your risks are yet. Health care professionals like to bring it up once they know more about a person’s risks.
- Talking about possibility of death is hard to do!
- They may be waiting for the right time to bring it up. It’s easier to talk about SUDEP once you know a person better.
- They may think you’re not ready to hear it.
- They may fear that talking about SUDEP will be too upsetting for you or your family.
The SUDEP Institute and the American Epilepsy Society partnered to create a webinar to help medical providers learn how to determine risk levels and how ot have discussions about SUDEP risk. Please encourage your medical provider to register for the webinar.
Should I wait for my doctor or nurse to bring it up or should I ask about SUDEP?
Good question! The answer may be different for different people. Some people like to know everything as soon as possible after they are diagnosed. Others need time to digest the information. Getting used to a diagnosis of seizures or epilepsy takes time. And if too much information is given all at once, usually people don’t remember it all, or it gets too confusing.
What should you do?
- If you have heard about SUDEP but never talked to your doctor about it, it’s time to ask questions. It’s important to get the facts from someone who knows you and who can tell you what it may mean for you.
- Talking about SUDEP will take time, so don’t bring it up at the end of an appointment.
- Tell your doctor or nurse that you have questions and ask when can you talk about it. They may recommend booking a separate visit to discuss your concerns. This way you‘ll have plenty of time.
- Write down what your doctor or nurse tells you. It’s hard to remember what is said during a stressful conversation.
- Download a SUDEP brochure to share with your doctor and help begin the discussion
What questions should I ask my doctor or health care team?
First, make sure you know some general facts about your seizures and epilepsy. It’ll be easier to talk about risks for SUDEP , if you know some of the basics. Consider some of the common questions to ask your epilepsy team.
More specific questions related to SUDEP to talk about:
- What is my risk of dying during a seizure? What is my risk of SUDEP?
- Does having seizures at night mean I could die during a seizure?
- What types of devices can I use to alert someone when I’m having a seizure?
- Should I consider sharing a room?
SAFETY FACT: Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. SUDEP occurs more often in people with frequent seizures. About one in 150 people with epilepsy whose seizures are not controlled may die of SUDEP. Learn more about SUDEP.
Should I talk about my epilepsy and risks of SUDEP with other people?
- Talk to your family about what SUDEP means to you and to them. They probably are nervous too and it may help to talk about it.
- Everyone should have a health care proxy or someone who can talk to your health care team or others if you are not able to talk for yourself. This could be very helpful If you or your loved one develops serious complications from the epilepsy.
- Don’t forget to talk to your family and friends about seizure first aid and how to stay safe too.
- The best way to stay safe is to make sure other people know how to help you when a seizure occurs
- Be courageous, tell people about your epilepsy and share your Seizure Response Plan.
- Ensure the people around you are familiar with seizure first aid and know when to call 911.
Hearing about dying from seizures or SUDEP is very upsetting! What should I do?
Yes, talking about risks of dying may be scary! People can get very anxious, upset, or down. These are normal feelings and you should talk to someone about how you feel. Talking may make you less scared or anxious and help you understand things better. However, sometimes talking about it doesn’t help. If the feelings don’t get better over time or or the scared and down feelings are getting worse, here’s a few things to consider:
- Tell your family or close friends how you feel. Having someone you trust to talk to is very important!
- Talk to your epilepsy doctor. If you continue to feel upset, anxious or down, he or she may recommend you see a counselor or psychiatrist to help.
- If you have a counselor, psychologist, or psychiatrist, make an appointment to see them right away. Let him or her know how you feel and what you’ve been thinking about. They are experts at helping people through difficult times – that’s their job so use them to help!
- If you’ve lost someone to SUDEP, or are afraid this could happen to someone you love, talk to a counselor. Grieving is a normal process, but can cause problems too. It’s important to see an expert in grieving and mental health to help you through this. Visit our page on Support for Bereaved.
- If you or a loved one continue to feel down or anxious and feel unsafe, call your doctor immediately or go to an emergency room to talk to someone right away.
SAFETY FACT: Depression affects nearly 5 in 10 people with epilepsy and seizures at some time. If you think you may be depressed talk with your doctor.
Some symptoms of depression may include:
- Feeling sad or "empty"
- Feeling hopeless, irritable, anxious, or guilty
- Loss of interest in favorite activities
- Feeling very tired
- Not being able to concentrate or remember details
- Not being able to sleep, or sleeping too much
- Overeating, or not wanting to eat at all
- Thoughts of suicide, suicide attempts
- Aches or pains, headaches, cramps, or digestive problems.
Would talking with others who are living with epilepsy and seizures help?
- You are not alone. Talking to other people in similar situations can be very powerful. They may understand what others never can.
- Your local Epilepsy Foundation can connect you with supportive people and services.
- Keep in mind that talking with others can also stir up lots of emotions. You may hear things that upset you. It’s important to remember that there are many different types of epilepsy and epilepsy affects people in many different ways.
- Discuss what you learn from others with your health care team. They can tell you how it relates to you and what to do next.
- Consider joining a support group.
- Visit the Community Forums for online support!