Reducing risk of sudden death in Epilepsy
22-year-old Fahim was diagnosed with epilepsy, a recurrent seizure disorder 12 years back. His seizure called generalised tonic-clonic was controlled with medications. For last 12 months, he had no episode of seizure and he took medication irregularly thinking that he had recovered. One morning, he was sleeping for very long and his parents came to make him awake. They became seized by grief when they saw that Fahim is not breathing. When they took him to a hospital, doctor confirmed his death. Fahim's death was sudden and unexpected. The cause of his death was listed as Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP accounts for up to 17 percent of all deaths in people with epilepsy. Most patients and their families do not know it until they loose someone from their family. This death is sometimes called unexplained death as it may occur without any obvious clinical or pathological explanations. There is a possibility of irreversible cardiac arrest, respiratory arrest (breathing stopped) by a seizure. SUDEP commonly affects people with uncontrolled or poorly controlled seizure taking a large number of anti-epileptic medications or take them irregularly. Most often, young people aged between 20 to 40 years are affected and die. People with severe epilepsy and learning difficulties, having at least a 2-year history of epilepsy, alcohol abuse are also at risk of SUDEP. Eminent neurologist of Bangladesh Prof Dr Md Abdul Hayee said that a patient with epilepsy can live a long and normal life if s/he knows about the disease. Controlling the seizure is the most important thing people should take into count. He pointed out that many people discontinue the anti-epileptic drug after seizure absent or controlled for a transient period. This is a harmful practice and particularly causes fatal complications like SUDEP, severe acute epileptic attack (called status epilecticus). People should take the drug regularly as long as the neurologist prescribed. "Depending on the severity and type of epilepsy, patients are prescribed with long term medication. For most cases, people have to take drug for life long to control epilepsy completely. About 15 to 25 percent patients have to take medication for shorter duration of 5 years", he added. He advised people with epilepsy to avoid certain job like driving, swimming alone, and work near fire or water. He informed that when attack occurs, people around the patient should help him/her to lie on soft place, remove dangerous and sharp object around him/her and maintain proper air flow. People should not hold the patient firmly during a seizure or should not insert anything to keep mouth open. Follow up is another important matter for people living with epilepsy. A visit at regular interval to neurologist can guide the patient properly with adjustment of drug dosage and assessing prognosis. It is surprising that many people still believe the misconception that epilepsy is an incurable disease; once people affected, no treatment can reverse/control it. They are reluctant to seek modern treatment; rather they seek indigenous treatment. Many people in rural part of Bangladesh believe the superstition that epilepsy is a ghosty phenomena and try to treat the patients by traditional healer brutally and harshly. Moreover, social stigma adds sufferings to these people with epilepsy. Awareness regarding the disease is extremely low throughout the Bangladesh which needs to be step up immediately. Those with poorly controlled seizures have an almost 1 in 10 chance of dying over the course of a decade. We can prevent most of these deaths by reducing the risk factors. Prevention is in our hands. We have to be our own advocate by knowing the disease. Nothing but awareness and knowledge can save many lives of epilepsy patients from sudden and unexpected deaths.
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