Epilepsy can cause a number of health complications, especially if it goes untreated. The most serious of these complications is known as sudden unexpected death in epilepsy (SUDEP). While uncommon, it does cause great concern among those with epilepsy because so little is known about what causes it or how to prevent it.
“Doctors always want to communicate the risk of SUDEP to patients when making a diagnosis,” said Carey Wilson, MD, a pediatric neurologist with University of Utah Health. “Not because it’s a high possibility, but because the patient needs to know it exists. But it would be very unlikely for someone with new onset epilepsy to die of SUDEP. The increased risk of SUDEP often comes if you have years of uncontrolled convulsive seizures.”
While there is no sure way to prevent SUDEP, there are ways to reduce the risk. The best way is to keep seizure activity under control. This is normally done with medication that must be taken consistently, without missing doses or changing the timing of when they are taken. “Sometimes people with epilepsy may not take their medication because they want to feel ‘normal,’” said Kimberly Orton, RN, epilepsy care coordinator. “This is especially true of young adults with the condition. But, in doing so, they put themselves at risk.”
In addition to properly taking medication, people with epilepsy can keep their seizure activity under control by taking care of themselves. This includes eating properly, exercising, and getting enough sleep. “Adequate sleep allows your brain to grow and rest,” Wilson said. “Also, avoid things that may interrupt sleep like stimulants and alcohol.”
For some people, medication adherence and lifestyle changes do not reduce the likelihood of seizure activity. Instead, working closely with a neurologist is the most reliable way to reduce the risk of SUDEP. “We do everything we can to investigate options for controlling epilepsy,” Wilson said. “We look for ways to shorten the severity of a seizure or ensure that someone is safe during the seizure.”
Understanding proper safety precautions during seizures is critical for people with epilepsy and their loved ones. After all, while SUDEP is frightening, it’s not the only risk facing those with epilepsy. “We ask people to think if they are in a situation where they could possibly die or be seriously injured if they suddenly lost consciousness,” Wilson said. “If the answer is yes, you shouldn't do that—at least until we feel that you have better controlled seizures.”
Some safety precautions people with epilepsy can take include taking showers instead of baths, using extreme caution when swimming, not sleeping in high places, avoiding stairs, and wearing helmets while bicycling, skateboarding, or skiing.
Those near a person having a seizure can help keep them safe and possibly reduce the likelihood of future seizures by using the acronym STARR:
- Safety: Make sure the person is safe and do not put anything in the mouth.
- Time: Keep track of how long a seizure lasts. Most are over within 90 seconds.
- Act calm: Panicking will only draw unwanted attention to the person having the seizure or lead to poor decision making.
- Recovery: Put them in a recovery position on their side after the seizure is over.
- Record: Write down everything you remember. This can help in preventing future episodes.
“Any type of recording, even if it's your cell phone, record it,” Orton said. “The information you collect
can give your providers so much more information than you know.”
Management of seizure activity by people with epilepsy and their loved ones can greatly increase quality of life. In the most serious circumstances, it can even save lives. Awareness, vigilance, and working with your providers to improve management of seizure activity by people with epilepsy and their loved ones can greatly increase quality of life. In the most serious circumstances it can even save lives.