SUDEP is a serious and unpredictable phenomena that can occur in those living with epilepsy. The risks of SUDEP can often be a difficult subject to broach; it can prove to be frightening, and it might even make you unhappy or upset. However, by talking about it and equipping yourself with as much knowledge as possible, you may be able to take precautions and hopefully prevent it from happening.
SUDEP stands for Sudden Unexpected Death by Epilepsy. Dr Samer Nashef, author of ‘The Naked Surgeon: How the New Science of Transparency is Revolutionising Medicine’ proposed the definition of SUDEP to be a “sudden unexpected, witnessed or unwitnessed, non-traumatic or non-drowning death in patients with epilepsy, with or without evidence for a seizure and excluding documented status epilepticus, in which postmortem examination does not reveal a toxicologic or anatomic cause of death.”
The inability to understand or explain the nature of this kind of loss only baffles doctors, scientists and researchers across the globe who have tried painstakingly to find an explanation to this tragedy. Among their vast research, they have managed to establish a criteria for the classification of death under SUDEP:
- A history of epilepsy
- Sudden and unexpected death
- Unexplained death (even after investigative efforts like an autopsy)
Further, during a seizure, SUDEP can be caused by one or a combination of two or more of the following:
Electrical Shutdown of the Brain CES
After a seizure, flattening of the brain waves or postictal generalized EEG (electroencephalogram) suppression (PGES Postictal Generalized Electroencephalography Suppression) is a common occurrence. Similar conditions have been found in cases of SUDEP during EEG monitoring, however, in these cases, there was no sign of recovery of the flattening and was immediately followed by death. Some researchers suggest that SUPEP may be caused by a prolonged and violent electrical arrest of the brain, leading to the failure of heart and respiratory functions.
Changes in the Working of the Heart
Through years of observation, it has been found that seizures disrupt the cardiac rhythm of the patient. If the rhythm increases or decreases abnormally, it may lead to heart-stopping functioning altogether. People living with epilepsy often use pacemakers to regulate their heart rhythms and avoid the risk of SUDEP. It has also been found that the hearts of people living with epilepsy have slight structural changes, the reason, however, is still being discovered.
There are links found that connect other ailments and SUDEP. For example, people living with tonic-clonic seizures and nighttime seizures are at a 10% higher risk of SUDEP than others. It can be controlled by ensuring AED (Anti- Epileptic Drugs) medication and regimes are strictly maintained and regularly keep up with your doctor check-ups.
Similarly, people with Takotsubo Syndrome, which occurs when severe stress impairs the functioning of the heart muscle, are at risk of SUDEP. It usually leads to heart failure, shock, irregularity of heart rhythms, clotting of blood or sudden death. Several genetic factors may put a person at risk for SUDEP. Research is being conducted to see if there is a link between a mutation of genes that affect the electrical activity of brain cells and seizures and epilepsy.
Changes in Respiratory Functions
It is common for seizures to cause apnea. Apnea is a pause in breathing, which could occur because during a seizure the brain’s ability to control breathing is momentarily impaired, or because there is a blockage of the airway. This is often observed with SUDEP or near- SUDEP cases. Other instances of distorted breathing patterns could be because of an influx of fluids filling the lungs, spasms of the voice box (larynx) and suffocation that could lead to SUDEP.
Studies have shown that a third of people living with uncontrolled partial epilepsy are at risk of seizures. Oxygen levels in their blood tend to drop rapidly while the Carbon Dioxide increases. These symptoms are similar to that of seizures and it leads to abnormalities in cardiac rhythms and regulation of blood pressure. In its severity, it can impair brain functions, leading to drowsiness, seizures, coma and death.
A comparison has been drawn between SUDEP and SIDS (Sudden Infant Death Syndrome) as they both occur when the victim is asleep and the cause of death cannot be found even after an autopsy. However, a deformity of the brainstem was found common in cases of SIDS. The brainstem is vital for the control of respiratory and heart functions, which, when impaired, can cause seizures. Some researchers suggest that the same may be the case for SUDEP.
A study in the scientific journal ‘Epilepsy and Behavior’ observed alcoholics with epilepsy. These alcoholics were found to be more prone to SUDEP than others. It was noted that alcohol (and drug) withdrawal symptoms compromise respiration, and prolonged periods of compromised breathing leads to suffocation and death.
What to Look Out For and How to Help
The only common occurrence in cases of SUDEP found is that the victims are in their bed, often sleeping, and are faced downward. However, seizure and SUDEP risk seems to be lower if listening devices, like baby monitors, are placed in the rooms of people living with epilepsy. The same effect is created when the room is shared with a person equipped with the knowledge of dealing with seizures.
Studies have found that certain steps can be taken to shorten the length of a seizure, improve EEG flattening, cardiac and respiratory rhythms. These included:
- Making sure that the patient is turned to their side to ensure that there is no blockage of airways
- Suctioning the mouth
- Giving the patient oxygen
- Performing CPR if necessary
- Stimulation to keep the patient conscious after a seizure
How to Reduce the Risks
- You should aim to have as few seizures as possible – work with your care team to formulate a plan to minimize seizure activity
- Track your seizures and identify your triggers
- Do not skip your AED medication. Stay on top of your regime. Here are a few simple tips to help you remember to take your epilepsy medication on time
- Make regular appointments with your doctor to track your progress
- Ensure you are taking care of yourself. Eat and exercise well, and allow your body to rest completely with a minimum of 8 hours of sleep
- Avoid alcohol and recreational drugs
- Alter your environment to keep your stress levels in check
- Know your risks. It is important to educate yourself so you are better equipped to let someone help you or for you to lend a helping hand to the people you love. Also, read about the types of epilepsy and their causes on our blog to better understand the condition.
InspyreTM by SmartMonitor is an innovative wearable technology that can help detect repetitive shaking motion and alerts family members and other caregivers with seizure alerts and help save lives. As SUDEP often occurs while asleep, the InspyreTM app is designed to even detect seizures that you may have while you are asleep. For further information and queries, read our blog or follow us on Instagram and Facebook.