It’s Time to Talk about SUDEP
November is Epilepsy Education Month and this year, the Epilepsy Association of Calgary has chosen to promote the awareness and education of SUDEP . With the help of the Kemery Family, we have a produced a poster which features their daughter Shelby Kemery who tragically passed from SUDEP in 2011. We aim to spread the word about SUDEP and get everyone who lives with epilepsy talking with their healthcare team to assess their own risks and work to minimize those risks.
On Tuesday, November 18, 2014 we welcomed Dr. Jeffrey Buchhalter, a pediatric neurologist and renowned SUDEP researcher and advocate to EAC to speak with our clients on the importance of talking with your healthcare team about SUDEP and your own risks. We also welcomed Donna Bernreuther to speak and share her story of losing her son to SUDEP after only five seizures. Doctors had not provided her family with any information on SUDEP and Donna spoke to the importance of having the conversation with your doctors – to get all of the answers before you have to ask the questions. We would like to thank Dr. Buchhalter and Donna Bernreuther for coming to share their wisdom, insights and experiences with everyone who attended. SUDEP is extremely tragic and can strike close to home for anyone and we are also thankful that we had such a wonderful turn out to our information session.
Sudden Unexpected Death in Epilepsy (SUDEP) is a topic that many people who live with or have loved ones with epilepsy hate to think about. Of course there are safety concerns for everyone who lives with epilepsy – the risk of going into Status Epilepticus, drowning or accidental deaths, but the notion that for reasons largely unknown, a person with epilepsy can just pass away, is terrifying.
So, what exactly is SUDEP? As it’s explained by neurologists, SUDEP essentially is a sudden, unexpected, witnessed or unwitnessed, non-traumatic, non-accidental, non-drowning death in a patient with epilepsy, with or without evidence of a seizure occurring prior to and not while in status epilepticus.
Every person who lives with epilepsy has a different level of risk for SUDEP and this risk can change fairly quickly. It is difficult to say what exactly causes SUDEP – whether it is something that happens in the brain that causes the respiratory system to stop working, or the opposite, where your respiratory system shuts down in turn causing your brain to stop as well. SUDEP is particularly scary, simply for the fact that at this moment, we truly don’t know why it happens to people of all ages, all with varying degrees of seizure severity and frequency. SUDEP has been reported to occur in people who have recently been diagnosed, and only have experienced a few seizures, while it also has been reported in people who have lived with epilepsy for many years.
The strongest risk factor for SUDEP is having frequent, generalized tonic-clonic seizures. The more frequent and uncontrolled these types of seizures are greatly increases the risk of SUDEP. Other risk factors include not taking medication on time or as prescribed in the correct dosages and abruptly stopping or changing your medications. People who are also taking more than one prescribed anti-epileptic drugs (AED’s) are also at higher risk.
Because there is so little known about SUDEP, it can sometimes be difficult to assess your own risk. It is extremely important that you speak with your neurologist and healthcare team about your own situation. Starting this conversation can be difficult, nobody wants to hear that they or a loved one is at a high risk of SUDEP, but it is far more important to have a scary conversation and be well-informed. Many times, families of people who have passed from SUDEP will say that they were unaware that SUDEP was a possibility, or that they didn’t know their loved one was at risk. It is always better to ask the questions than to be left shaking your head after something tragic occurs.
Even if your neurologist has never broached the subject of SUDEP with you – ask them about it! They may have not told you because your risk is low, or they don’t know enough about your seizure activity yet. It can be extremely overwhelming getting an epilepsy diagnosis, and it can become even more overwhelming and upsetting if the next thing said is that epilepsy can be fatal. Some doctors may choose to hold off the discussion of SUDEP until the next appointment meeting or until they can gain more information and insights into your situation.
It is hard to know when or if SUDEP is going to occur but there are things that you can do to minimize your risk. Work to minimize the number of seizures you experience which means:
• Sticking to your prescribed treatment (medications, diets etc.) from your doctor
• Take all medications on time, in the correct dosages
• Let your doctor know of any troublesome side effects from medications as soon as possible
• Do not change or abruptly stop taking your medications
• Work to identify some possible seizure triggers you may have so you can avoid them
• Make sure to keep and attend your appointments with your healthcare team
• Be honest about the number of seizures you are experiencing or if you are having difficulties with your medications
• Discuss other types of epilepsy treatments with your neurologist if necessary
• Do your best to lead a healthy, active lifestyle which includes having a good diet, getting enough rest each night by keeping a regular sleep routine and getting physical exercise as often as possible
• Make sure to educate your family and friends about seizure first aid and what they can do to help if a seizure happens
If you have questions about SUDEP or want more information, please give us a call at the office at (403) 230-2764, or send an email to firstname.lastname@example.org.
Other great sources of information are:
SUDEP Aware (Canada) www.sudepaware.org
SUDEP Action (UK) www.sudep.org
SUDEP – Epilepsy Foundation of America www.epilepsy.com/learn/impact/mortality/sudep