Can getting good care of my epilepsy prevent SUDEP?
Yes it can help! The risk for SUDEP (sudden unexpected death in epilepsy) is higher in people with uncontrolled seizures. Thus, having as few seizures as possible, or ideally zero seizures, is the best way to lessen your risk and prevent SUDEP. Getting the "best care" you can for your seizures will help improve seizure control.
Keep in mind that there’s a lot about SUDEP we don’t understand. People with epilepsy can still die from SUDEP, even with the best care and the best seizure control.
How can I get better control of my seizures?
There are lots of things you can do to get better seizure control. First ask yourself if you’re getting the quality of care that you need.
Then look at what steps you can take, such as:
- Taking your seizure medication consistently and at the right dose.
- Seeing your epilepsy doctor and other health care providers regularly.
- Ensure you are getting enough sleep each night.
- Avoid drinking too much alcohol or using recreational drugs.
- Know what triggers your seizures and adjust your lifestyle and environment as needed.
- If medicines do not work, consider other therapies such as epilepsy surgery, devices, or dietary therapy.
- Be a good manager! Take good care of yourself. Eat well and regular exercise.
- Look at your stress level and how you can manage stress better.
- Track your seizures in your epilepsy diary. Note your triggers, when seizures occur, side effects or any medicine changes in the diary too! Knowing more about your seizures will help you and your health care team decide if changes in care are needed!
- Know your risks for seizure emergencies and SUDEP. Talk to your doctor to understand your risk and make a plan.
- #AimForZero seizures and SUDEP.
How can I be prepared and stay safe?
- Make sure family, friends and co-workers know what to do for seizure first aid.
- Keep your Seizure Response Plan up-to-date and make sure people close to you know where it is and how to use it.
- Be seizure safe! Take extra precautions around water, including swimming and bathing.
- Since SUDEP occurs most often during sleep, consider a seizure alert monitor if you have seizures at night.
- People who have frequent seizures at night may want to share a room so help is available if needed.
- Talk about how you can still have privacy and make sure that everyone still gets a good nights sleep!