Epilepsy is a chronic, non-communicable brain disease that causes repeated seizures. It affects about 50 million people globally every year, making it one of the most common neurological diseases, according to the World Health Organization (WHO). Epilepsy affects 49 out of every 100,000 people in high-income countries each year, and 139 out of every 100,000 people in low- and middle-income nations.

In India, more than 10 million people had epilepsy in 2017, per estimates provided by an October 2022 multi-hospital study, including the All India Institute of Medical Sciences, Delhi and King Edward Memorial Hospital, Mumbai. The treatment gap – defined as the proportion of persons with active epilepsy who are not currently receiving treatment, or are receiving inadequate treatment – is as much as 75% in low- and middle-income countries, per the study. In India, the treatment gap ranges between 22% and 95%, with larger gaps found in rural India and among women, per a December 2015 study by the Centre for Public Health and the National Institute of Mental Health and Neurosciences in Bengaluru.

Epileptic seizures can range in severity from mild muscular jerks to violent convulsions. Most seizures last less than a minute, after which the patient remains unconscious for about 10 minutes, then gradually regains consciousness, neurologists told FactChecker. Seizures lasting more than a minute, called Status Epilepticus, can be life-threatening.

Seizures are classified into two major groups: focal and generalised seizures. Focal seizures affect only one part of the brain, while generalised seizures start as focal seizures but then affect both sides of the brain. A person with epilepsy can have more than one type of seizure. Common symptoms of epilepsy, apart from seizures, include loss of consciousness, muscle stiffening, changes in sensation, staring spells and uncontrollable jerking.

Insufficient knowledge has led to widespread misconceptions about the disorder in India, contributing to stigmatisation of epilepsy patients, say experts. On National Epilepsy Day, FactChecker spoke to doctors and dispelled seven myths about the neurological condition.

Myth #1: Epilepsy is only a genetic disorder

Fact: Gene mutation leads to the development of genetic epilepsy. Epilepsy is more likely to occur if an individual inherits several of these mutated genes. However, many individuals with genetic abnormalities might never develop epilepsy, say neurologists. "There are many factors other than genetics that lead to epilepsy. Though the risk of epilepsy due to heredity is higher, the incidence of such cases is low. Only about 30% of cases of epilepsy are due to genetic causes and genetic epilepsy can be easily treated," said Dr Sathish Kumar V, Senior Consultant Neurophysician, Gleneagles Global Health City, Perumbakkam, Chennai.

"All epilepsies have a genetic component to some extent, but there are many other causes that might lead to epilepsy such as a severe head injury, road accident, infection in the brain such as meningitis, stroke, brain damage from prenatal causes or any other structural damage to the brain. There is also a type of epilepsy called photosensitive epilepsy that is caused due to visual triggers," said Dr Gagandeep Singh, Secretary, Indian Epilepsy Association (IEA), Professor & Head, Department of Neurology, Dayanand Medical College (DMC), Ludhiana and Honorary Senior Lecturer, Department of Clinical & Experimental Epilepsy, UCL Queen Square Institute of Neurology, University College London.

Myth #2: A seizure is a confirmed indication of epilepsy

Fact: "People often use seizure and epilepsy interchangeably. The difference between seizure and epilepsy is that seizure is a condition wherein a person gets fits or convulsions once or twice in their lifetime, but epilepsy is a condition in which, unless treated, seizures occur repeatedly throughout a person's lifetime. Although seizures are a primary symptom of epilepsy, one incidence of seizure alone does not indicate epilepsy," said Dr Kumar V. A person experiencing a seizure for the first time must undergo tests including CT scans, MRI scans and electroencephalograms. Only If a doctor notices anomalies in these scans, is there a potential that the person might have epilepsy, he added.

"Non-epileptic seizures can occur due to many factors such as stress, anxiety, depression, and lifestyle habits like lack of sleep and missed medications. Depression has a bidirectional relationship with epilepsy. Roughly about 30%-40% of epilepsy cases are caused due to depression," said Dr Singh.

Other medical conditions such as low blood sugar, high fever, and alcohol or drug withdrawal can also trigger seizures.

Myth #3: People with epilepsy can swallow their tongue during a seizure

Fact: "If a seizure lasts longer than two to three minutes, problems including aspiration, choking, and breathing difficulties are more likely to occur. Due to these issues, an epileptic patient might bite their lips and tongue during a seizure, which may result in bleeding, but it is anatomically impossible for a person to swallow their own tongue," said Dr Kumar V. The frenulum linguae, a tissue located under the tongue and behind the teeth, holds the tongue in place, even during a seizure.

As a person experiencing a seizure has no control over their muscles, they could possibly bite their tongue due to clenching of teeth, which increases the risk of the person suffering a jaw or tooth injury, Dr Singh explained.

Myth #4: Forcing a foreign object into a person's mouth during a seizure can help prevent choking

Fact: Forcing a foreign object like a spoon or a finger into a person's mouth can lead to more harm than good, explained both doctors. It is not an effective way to prevent choking and further, will lead to more complications as the person, who has lost control over muscle movement during a seizure, might choke on the foreign object and possibly end up injuring their teeth and jaw.

"It is important that family members and bystanders follow these three important steps while providing seizure first aid. The first step is to stay with the person experiencing a seizure and to ensure that there are no sharp objects around, that could possibly lead to an injury. The next step is to keep the person safe and away from crowded environments and lastly to roll the person gently to one side which will help the person breathe," said Dr Singh. More about seizure first aid can be learnt through this video created by DMC Ludhiana's Department of Neurology.

A person having a seizure should not be physically restrained, should not be administered mouth-to-mouth cardiopulmonary resuscitation, and should not be fed water or food until they regain consciousness, according to the United States' Centers for Disease Control and Prevention.

Myth #5: Epilepsy is a mental illness and people with epilepsy are intellectually disabled and find it difficult to perform daily activities

Fact: Epilepsy is not a psychological condition, however, people with epilepsy are at a higher risk of developing one, per the Australian Epilepsy Foundation. "A few people have epilepsy due to brain damage, which might lead to cognitive issues, but most people with epilepsy can continue their daily activities without any difficulties. The trouble only arises when seizures are frequent and poorly controlled," said Dr Singh.

"At times, due to side effects of anti-epileptic drugs (AEDs), people with epilepsy tend to have some behavioural and cognitive issues. However, in more than 80% of epilepsy cases, patients have no mental or intellectual problems throughout their lives," said Dr Kumar V. He further elaborated that a person's learning capabilities are dependent on the underlinked causes of a seizure, and on the frequency and severity of seizures, and there are no restrictions on people with epilepsy taking up even high-pressure careers.

Exercise and sports rarely trigger seizures, and regular exercise may improve seizure management, said both doctors. However, both also cautioned that people with epilepsy should avoid getting any sports-related injuries.

Driving is the only activity that is strictly prohibited and should be avoided at all costs by people with epilepsy, as they might put their own and other people's life at risk, said both doctors.

Myth #6: Epilepsy leads to infertility and women with epilepsy cannot become pregnant

Fact: "There is no direct link between infertility and epilepsy. Only about 5% of people with epilepsy are infertile, and such cases are due to the AEDs which are prescribed and not due to seizures. The side effects of AEDs might lead to obesity, low mood, sleep deprivation and low sexual drive, and can restrict conception. However, this myth is deeply rooted in social stigma, as people do not tend to get married to a person with epilepsy," said Dr Kumar V.

"A proper pre-marriage and pre-pregnancy consultation with a neurologist and gynaecologist will help do away with these stigmas. Side effects of certain anti-epileptic drugs might affect a baby's development, particularly the spine, which is why counselling before pregnancy planning is important, as a doctor might prescribe a new drug or alter the dosage. In some cases, frequent seizures can also lead to premature labour and miscarriage. However, a mother with epilepsy who is taking prescribed medications is fully capable of conceiving a healthy child," said Dr Singh.

The exposure of breastfed infants to AEDs was significantly lower than in the mother taking AEDs, and even lower exposure was recorded during pregnancy, a December 2019 study of 351 pregnant women with epilepsy and their 345 infants, by multiple US universities, showed.

Myth #7: No treatments can help cure epilepsy

Fact: "If a person with epilepsy starts timely treatment, there is a 50-60% chance that seizures can be controlled with a single anti-epileptic medicine. The rest of the patients might require more than one medicine and at times, patients with a condition called drug-resistant epilepsy can continue having epilepsy despite taking AEDs, however the incidence is low. People with drug-resistant epilepsy might have to undergo surgery for seizure remission," said Dr Singh. In India, it is estimated that more than 2 million patients (20%) have drug-resistant epilepsy, per the October 2022 multi-hospital study.

When surgery is not an option, there are devices that can be used to treat epilepsy in drug-resistant patients, said Dr Singh. The Vagus Nerve Stimulator is a device implanted in the chest which helps reduce the frequency and severity of seizures by sending mild electrical impulses through the vagus nerve to the brain, according to the American Association of Neurological Surgeons.

"The majority of seizures do not require hospitalisation, but if a seizure is recurrent, prolonged, or happens for the first time, or happens to a pregnant woman, then it is advisable to get medical help," said Dr Kumar V. He further clarified that if a person has been seizure-free for more than three years, then a doctor can stop AEDs.