Epilepsy, a neurological disorder characterised by recurrent seizures, has long been misunderstood. Once whispered about in hushed tones and attributed to supernatural causes, it was a condition feared more than understood. The condition affects millions of people worldwide.
Experiencing a first seizure can be both terrifying and disorienting. For 28-year-old Priya (name changed), an engineer based in Kochi, her first seizure at the age of 14 felt like a nightmare. “It happened suddenly, during a family gathering. It felt like electricity running beneath my skin. My surroundings blurred and distorted. I tried to speak, to call out for help, but no words came. Then the spasms started. My muscles tightened painfully beyond my control, throwing me onto the floor. When I opened my eyes, I saw the worried faces of my family members,” Priya recalls.
Initially, her family struggled to understand her condition. Over time, they educated themselves about epilepsy and provided her with the necessary medical and emotional support.
Some famous persons affected by epilepsy include South African cricketer Jonty Rhodes, and a number of historical personalities: Charles Dickens, Alexander the Great, Socrates, Julius Caesar, and Napoleon Bonaparte. In the 2023 Indian film Bawaal, the lead female character, Nisha (played by Janhvi Kapoor), suffers from epilepsy, which plays a significant role in the plot as her husband, Ajay (Varun Dhawan), is initially ashamed of her condition and tries to hide it from others. The movie tries to bust myths and misconceptions surrounding epilepsy.
Classifications of epilepsies and seizures
Epilepsy occurs due to abnormal electrical activity in the brain. It may affect any age group. Epilepsy can be classified into: epileptic syndromes (most of which are age specific); genetic epilepsy (inherited); symptomatic epilepsy (due to structural or metabolic lesions or conditions) and idiopathic epilepsy (epilepsies of unknown causes).
An aura is often the first phase of a seizure, serving as a warning sign before more noticeable symptoms appear. Auras occur due to abnormal electrical activity in a specific part of the brain. The type of aura depends on which brain region is affected. These sensations may last for seconds to minutes before progressing into a larger seizure. According to Dinesh Kamath, a senior consultant neurologist, Ernakulam Medical Centre, Kochi, seizures can vary from brief, nearly undetectable episodes to prolonged convulsions.
There are many types of seizures, and they are categorised based on how they begin in the brain.
Focal seizures: These seizures start in one area of the brain, leading to either simple focal seizures (no loss of awareness) or complex focal seizures (with loss of awareness). Generalised seizures: These originate in both hemispheres of the brain simultaneously and can include absence seizures, tonic seizures, tonic-clonic seizures, myoclonic seizures, clonic seizures, and atonic seizures.
Why does it happen?
There are various causes of epilepsy. In some cases, epilepsy can be due to genetic factors. In others, it may be the result of a brain injury, developmental disorders, infections, or even tumors. However, in about half of all cases, the exact cause remains unknown.
Certain triggers, including lack of sleep, stress, flashing lights, alcohol consumption, and hormonal changes, can provoke seizures in people with epilepsy. These can vary from person to person.
According to Ajay Kumar, a senior consultant neurosurgeon, Kochi, many patients hide their condition, fearing social stigma. “Lack of awareness is the biggest barrier. Many believe epilepsy affects intellectual capacity, branding patients as less capable. This is incorrect, as epilepsy does not inherently impact intelligence or cognitive abilities. Most people with epilepsy can excel academically and professionally if they have access to proper treatment and a supportive environment.” says Dr. Ajay.
He adds that many people are afraid to seek treatment. “In rural areas, people still believe that seizures are caused due to supernatural forces or possession by spirits. This leads many families to seek treatment from faith healers rather than medical professionals.”
Another common misconception is that epilepsy is contagious. This belief isolates individuals socially and hampers their participation in regular activities, education, and employment. In reality, epilepsy is not contagious and cannot spread from person to person. Despite advancements in medical science, these myths persist, leading to stigmatising of affected individuals,” says Dr. Ajay. Dr. Dinesh seconds this. According to him, awareness initiatives, community programmes, and informed discussions can significantly reduce stigma.
New treatment options
“We are entering an exciting era in epilepsy care. From improved diagnostic tools to advanced treatment options, we are now better equipped to manage this condition,” says Dr. Dinesh. He adds that many people with epilepsy fear it may shorten their life expectancy. However, that is not the case. With proper treatment and precautions, many individuals with epilepsy lead long and fulfilling lives. If seizures are well controlled, the impact on life expectancy is often minimal.
Living with epilepsy presents unique challenges. The unpredictability of seizures can lead to anxiety and fear, making it difficult for individuals to engage in everyday activities, such as driving, working, or even socialising.
Anti-epileptic drugs (AEDs) are generally the first-line of treatment. “For patients who do not respond to AEDs or experience side effects at high doses, surgery is an added option. However, epilepsy often requires lifelong medication, and even after surgery, some patients still need AEDs. This is why medication is the first choice for treatment. Even after surgery, only 60-70% of patients become seizure-free, with or without medication. Others may still need AEDs, but at lower doses or fewer drugs. While surgery can reduce the severity and frequency of seizures, some patients will continue to need medication,” says Dr. Dinesh.
Education and awareness are essential towards better acceptance of individuals with epilepsy. “Epilepsy is not a curse, nor is it a life sentence. It is a medical condition, that requires medical attention, social awareness, and patient support. With advancements in treatment, many individuals can manage their condition effectively. Educating the public can make a significant difference,” adds Dr. Dinesh.
(Sreedevi Jayachandran is a medical doctor by training.)
Published – February 28, 2025 03:00 pm IST