About SUDEP

What is SUDEP?

• SUDEP stands for Sudden Unexplained Death from Epilepsy
  

• It refers to the sudden death of someone with a history of seizures who is otherwise well, and where no other reasonable explanation for death is present

• SUDEP accounts for 7-17% of deaths among people with epilepsy; the reason for the wide range is because there is a general lack of awareness and many cases are classified as unknown

• In a well-intentioned effort not to frighten patients or their families, many doctors do not discuss the risk of SUDEP; leaving both patients and their families unaware that seizures can in fact be fatal

• Many families – like Caroline’s  -  have never heard this acronym until it is uttered by a physician explaining why their young, otherwise healthy loved one has suddenly died without warning

• We at the Care-Alive Foundation believe that everyone has a fundamental human right to know everything about their health and any medical conditions that may afflict them

• Only when armed with all the knowledge about their disease or condition can one make the necessary decisions about their treatment and make the appropriate lifestyle choices

What are the Risk Factors of SUDEP?

The mechanisms that lead to SUDEP are still unknown, and as such, it is difficult to identify “proven” risks,  however, thanks to a number of scientific studies, a few risk factors have been identified:

• The use of more than one anti-epileptic drug at a time and frequent changes in medication

• Individuals with refractory seizures and those with a high frequency of generalized tonic clonic seizures

• Poor compliance with the anti-epileptic drug (AED) regime
  

• The age at which epilepsy is diagnosed is also an unmodifiable risk factor as those under the age of 20 seem especially afflicted. In addition, those newly diagnosed in adulthood with a median age of 29 are at a greater risk.  SUDEP cases within this group occurred between the ages of 31-40

• There is a myth that vigorous exercise increases the SUDEP risk, however, there have been a number of cases that lead experts to believe that that physical activity should be kept within normal levels and that care should be taken to minimize dehydration, electrolyte imbalance, hyperventilation, and hyperthermia during physical activity

• Studies have shown that most un-witnessed SUDEP cases that occur in bed are found in the prone sleeping position or sleeping on their stomach.  Sleep apnea is also believed to be a risk factor

What can you do about SUDEP?

Research indicates that SUDEP is primarily a seizure-related phenomenon as such, attaining seizure control is of paramount importance. important.  Recommendations to achieve this include:

• Maintain good adherence/compliance with medication regime

• Learn as much as you can about your type of seizures, meet with your doctor or neurologist regularly, try to identify triggers for your seizures, review medication and the possibility of new treatments, discuss implications of lifestyle changes

• Educate your family, friends and colleagues about what to do if you have  a seizure; including encouraging them to get CPR training

• Wear a medic alert bracelet or necklace

• Remain open to trying new medications and treatments

• Maintain regular and adequate sleep patterns

• Find ways to manage stress or remove stress from your life or work, and at the risk of giving seemingly contradictory advice, try not to worry about the risk of SUDEP or your epilepsy in general (essentially we want you to help you understand what you can control and respectfully suggest you not worry about what you can’t)
  

• Avoid consuming alcohol

• Establish an emergency contact, install an emergency response system
  

• Consider the benefits of a seizure-response dog
• Lower the risk of suffocation during a nighttime seizure by reducing the amount of bedding and using ventilated pillows
• Ask your doctor if they would recommend an automated external defibrillator for the home

• A number of possible preventive measures have been discovered and include increased omega-3 fatty acids (3000-to 4,000 mg of daily fish oil supplements or 2-3 servings of fish) which have a number of widely accepted health benefits, but it is the prevention of cardiac arrhythmias and sudden cardiac death that make it interesting in reducing the SUDEP risk

To learn more about SUDEP:

• Read the article written by Kimberly Berman
• And visit www.sudepaware.org (an excellent resource for anyone living with epilepsy)