Living with epilepsy of any kind may bring serious effects to one’s health and quality of life. Epilepsy makes simple day-to-day tasks and turns them into potential risks. On top of the obvious hazards of epilepsy, the strain it can put on one’s mental state can be equally as frustrating.
One of the biggest problems facing those living with epilepsy is its contribution to premature death, or sudden unexpected death in epilepsy (SUDEP). The Epilepsy Foundation defines SUDEP as ‘the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Each year, about 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures.’
So, what can you do to protect yourself?
Reduce Your Epilepsy Risk Factors
The first and most obvious approach to reducing risk factors associated with epilepsy is to reduce the frequency of your seizures. In order to do this, you should consult with your clinicians, dietitians, neurologists and other professional healthcare workers. Taking a shared-care and team-oriented approach with these professionals can give you a customized strategy. The goal is to set-up a plan that positively impacts your quality of life. Understanding the role that proper sleep and diet play, taking your regimen of medications as prescribed and knowing about your options, such as possible surgical interventions, are incredibly important.
Use Seizure Detection Options
Another avenue one might consider is the use of commercial devices designed to detect seizures and minimize the risk of SUDEP. Tools like movement sensors, accelerometers, video and infrared devices, anti-suffocation pillows and even seizure alert dogs can help detect changes in the body and possibly forewarn a user that a seizure is about to occur.
The Importance of Talking About SUDEP
While raising the topic with patients is considered controversial among the medical community, it is important for people living with epilepsy to be aware of the risks associated with SUDEP. Many patients feel it is better to know their risk, so they can be proactive and seek options that could help prevent SUDEP.
If you or a loved one are looking to reduce the risk of sudden unexpected death in epilepsy, a shared-care approach that includes your healthcare providers is of the utmost importance. Discussing SUDEP with your doctors, reducing risk factors and taking advantage of available resources can also help assist in prevention efforts.
RSC Diagnostic Services delivers in-home ambulatory long-term video EEG. RSC empowers physicians by increasing the diagnostic yield to evaluate, diagnose and treat a variety of neurological symptoms. We are committed to improving patient outcomes and enhancing caregiving.