Thinking about SUDEP risk factors
[Part 1: Facts; Sierzant TL]
The term ‘risk factors’ is one that should be considered carefully when thinking about SUDEP. When receiving a new diagnosis, whether it is cancer, osteoporosis, or epilepsy, initial thoughts may turn to ‘what did I do to cause this?’ and ‘what can I do to prevent it from getting worse or happening again?’ In the last ten years our understanding of SUDEP has expanded but there is still a great deal we do not yet know about the causes and risk factors. An individual may read a list of conditions or characteristics believed to be contributing to the occurrence of SUDEP, however it must always be kept in context. Keeping the risk factors in context means that they are thought about as they specifically relate to an individual. Epilepsy presents itself across a spectrum of severity and, as such, a list of risk factors on a web page does not apply to every single person with epilepsy in every single situation. Such a list should not automatically provide comfort that ‘this doesn’t apply to me’ or fear that ‘this definitely applies to me.’
A list of risk factors can serve as a guide for discussion with the physician. Some risk factors will apply, some will not. However, the extent to which the risk factors play a role in an individual’s situation is part of an ongoing discussion. There are different ways we deal with information. One way is understanding the facts, and what this information means for me. Another way is to deal with any emotions related to those facts. These emotions may have a positive or negative effect and, in either case, should be considered and understood. Effectively dealing with negative emotions will contribute to overall positive management of epilepsy.
Anything the healthcare community knows about SUDEP risk factors must be applied to the specifics of an individual’s situation and discussed within the context of that person’s epilepsy. Scientists are collecting data about SUDEP at an increasing rate and analyses of these data are increasing at a similar pace. What must be done next, however, is to consider the individual’s quality of life, knowledge the individual has of their own condition e.g., seizure type(s), degree of control, any conditions that may trigger seizures, and how risk factors can be best managed. Some risk factors cannot be controlled, e.g., age and gender.
To be put into proper context, risk factors must be discussed between the individual/family and the healthcare provider partnering with them in managing their epilepsy. This is an essential component to effective self management of the epilepsy and ultimately will impact the quality of the person’s life. Truth be told, not a single person can predict when another is going to die, or from what cause. Life itself is a series of calculated risks. However, making conscious choices about the risks that can be controlled, those that cannot be controlled, and those we choose to ignore should be done with knowledge in hand. This is where the conversation with the physician or nurse can be enormously helpful in considering risk factors.
Managing fear can play a significant role in managing risk factors. When we are afraid, fear prevents us from thinking clearly and carefully. When we are afraid, it can become more difficult to do what the physician or nurse recommends to manage epilepsy. When we are afraid, it is easy to become angry and not want to deal with the difficult things in life. Managing our fears is an ongoing battle. Facing up to them, acknowledging them, talking about them with those that support us, can all help in managing epilepsy, and ultimately fear about SUDEP. At present, for example, we believe that poorly controlled seizures increase the risk of SUDEP. What this does not mean, however, is that someone with well-controlled seizures could not experience SUDEP. It just means that the risk is less.
This is as true of receiving a diagnosis of epilepsy as it is with other conditions. Having others who are close to us – family, friends – listen to information at appointments can be a helpful tool in the toolbox of self management. Is there another person who we see as calm and thoughtful, that we trust, and will stand by us over the long haul? A human being is a dynamic, ever changing entity. The functioning of our aging brains, our confidence level, our acceptance of risk factors out of our control, all will vary as we move through life. We lean on others when needed, as they lean on us.
What can be done to best manage SUDEP risk factors? First, understand as much as you can about the type if epilepsy you have and what your physician and nurse are recommending to best control the seizures and manage the overall impact on your life. Second, seek information. Ask questions until you believe you are comfortable with the information you are receiving and understand it. And remember that risk factors need to be discussed and understood within the context of your specific situation. There is no better partnership to address this than you and your physician and nurse. Third, acknowledge fear and other strong emotions you may be experiencing related to having epilepsy and when thinking and reading about SUDEP. Talk about them with your healthcare providers, your family and friends, and make a clear plan for how you are going to deal with them. Finally, understand that life will always have ups and downs. Knowledge, support, understanding the SUDEP risk factors and what they mean for you, and ultimately believing in your ability to manage epilepsy overall will go a long way toward enjoying a fulfilling life.
Tess L Sierzant
Neuroscience Clinical Nurse Specialist
Saint Joseph's Hospital, St Paul, USA
How to cite:
Sierzant TL. Thinking about SUDEP risk factors. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.