Sudden unexpected death in epilepsy (SUDEP): Dealing with the fear

Being well informed about SUDEP can make it easier to deal with fears and worries. Knowledge can also be reassuring by helping you to realistically assess the risk of SUDEP. This risk varies from person to person and depends on a number of factors, like how often you have severe seizures.

Seizures can be prevented by avoiding triggers and optimizing your treatment. It is best to discuss with your doctor exactly which measures are suitable and fit easily into your everyday life. If the seizures become less frequent, people often feel less anxious as well.

It can be good to share your feelings and experiences with others. This is both true for those who have epilepsy and their loved ones. Talking with your partner, but also with other parents of children with epilepsy, allows you to share your fears, worries and coping strategies.

You can join a support group to meet other people in your situation. They are going through something similar and know about the risk of SUDEP and the associated feelings and problems. There you can talk about issues that are often difficult to discuss with loved ones or with people who aren't affected by epilepsy.

Special counseling centers can help as well – also if new questions or issues arise over time. People who live in Germany can find lists of local epilepsy support groups and counseling centers on the website of the German Epilepsy Association (in German). There you can also find educational training programs for children, teenagers and adults with epilepsy, as well as for their loved ones. The website of the German Society for Epileptology (in German) also includes links to online offers for people with epilepsy and those close to them.

If anxiety becomes a big problem, greatly affecting your daily life, psychosocial counseling or psychotherapy can be helpful.

Many parents worry about the possibility of their child having a seizure during the night. To keep a better eye on their child, they let them sleep in the same room or bed, or keep their bedroom doors open. Other parents use devices to monitor their child – for example, a baby monitor, cell phone or special seizure-detection devices. These measures can help you notice if your child has a seizure, giving you a sense of security. Some parents say they're able to sleep better again as a result – even in a different bedroom to their child. But devices that monitor children can set off false alarms, causing distress and disturbing your sleep.

The fear of sudden epilepsy-related death can make parents become overprotective of their child. It is still important to respect the child's growing need for independence and privacy as they get older, though. And nothing can guarantee that SUDEP won't occur – no matter what you do. This realization can be difficult to bear. Finding a good way to deal with it can allow you to feel less helpless and see a brighter future.

Some parents of children with epilepsy say that they constantly keep an eye on their child, always ready to react quickly if they have a seizure. Their need for control is often particularly big at night. Some parents make major changes in their own life, both in their personal life and in their job, in order to be there for their child. They no longer have restful sleep or take part in social activities with others. They are constantly on guard, have sleepless nights and neglect their own needs. All of this is exhausting and psychologically distressing in the long term.

Despite all the concern for the child, it is also important to take care of yourself and find the right balance. Even everyday things can do you good and help you to recharge your batteries. Examples include exercise, sports or a relaxation technique – as well as things like getting out into nature, going to the cinema, meeting up with friends, and getting enough sleep. Ultimately, anything that helps you will also help your child.