Talking to Your Doctor About SUDEP
Talking with your doctor or healthcare team about SUDEP helps you learn about risks based on your type of seizures. In general, some ways to lessen your risk include:
- First, take every step possible to control your seizures.
- Second, know your risks by talking to your doctor and healthcare team.
- 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.
Why has my doctor not talked about SUDEP?
Below are a few reasons why healthcare 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.
Should I wait for my healthcare team to bring up SUDEP?
It is up to you if you would like to ask your healthcare team about SUDEP. 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. If too much information is given all at once, people usually 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.
What questions should I ask?
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 or after a seizure? What is my risk of SUDEP?
- Do the type of seizures I have put me at risk?
- What can I do to lower my risk of SUDEP?
- 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 1 in about 200 people with epilepsy whose seizures are not controlled may die of SUDEP.
Should I talk about epilepsy and SUDEP risks 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 healthcare proxy or someone who can speak with your healthcare team or others if you can't speak for yourself. This could be very helpful If you or your loved one develops serious complications from the epilepsy.
Remember the following:
- 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.
What should I do if hearing about early death or SUDEP is very upsetting?
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: If you think you may be depressed talk with your doctor. Some symptoms of depression may include feeling sad or hopeless, difficulty concentrating, and trouble sleeping.
Does talking to other people living with 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 healthcare team. They can tell you how it relates to you and what to do next. You may also want to consider joining a support group.
Resources
Epilepsy Centers
Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.
Epilepsy Medication
Find in-depth information on anti-seizure medications so you know what to ask your doctor.
Epilepsy and Seizures Helpline
Call our Epilepsy and Seizures Helpline and talk with an epilepsy information specialist or submit a question online.
Tools & Resources
Get information, tips, and more to help you manage your epilepsy.
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