For over 30 years, Akanksha Patankar had never known or heard much about epilepsy. However, during her first pregnancy, 13 years ago, she began experiencing something peculiar, and she recalls two such incidents.
One morning, while she was in the shower, Akanksha experienced a blackout and only remembers waking up on the shower floor. Initially, she dismissed it as a moment of fatigue and didn’t make a big deal about it.
The next incident occurred with her husband present. “One day, after finishing my lunch, I went to keep my plate in the kitchen. I then started walking back to the bedroom, where my husband and I were watching a movie. My husband was sitting on a chair with his back to me and I was four months pregnant at that time,” she said. “Suddenly, he noticed that I was about to fall from the corner of his eye and rushed to hold me, ensuring the safety of our baby.”
Considering the second incident, the couple grew concerned and consulted her gynaecologist about it. They were asked to monitor her activities and be cautious.
“The third incident occurred when I broke off in the middle of a conversation and started talking gibberish,” said Akanksha. “We were directed to go to the hospital for observation, and they diagnosed it as epilepsy. We were unfamiliar with this term, and knew nothing about it.”
The diagnosis triggered a wave of emotions. Akanksha was diagnosed with eclampsia, a condition she explained as ‘pregnancy-induced epilepsy.’
This story is a part of our series ‘Survivor Stories’ where we share narratives from people who’ve combatted or are currently living with different diseases or ailments. We combine their personal experiences with inputs from experts and specialised doctors to deliver credible and authentic information.
Also Read: Epilepsy During Pregnancy: Is It Safe To Take Antiepileptic Medications?
“We were torn between the feelings of joy for expecting our first baby and sorrow for grappling with this condition, called epilepsy,” she recalled.
For a deeper understanding of what Akanksha and other such patients battling epilepsy deal with, OnlyMyHealth got in touch with Dr Gaurav Tyagi, MCh Consultant, Department of Neurosurgery, Indraprastha Apollo Hospital, New Delhi. His insights are under the ‘doctor speaks’ section in this article.
According to reports, India has over 10 million people affected by epilepsy. Despite this, there seems to be minimal awareness or knowledge about the condition, its symptoms, and potential treatments.
Doctor Speaks:
Epilepsy can affect people of all ages, anyone can have seizures.
For kids, fever or brain infections may cause convulsions. For adults, changes in body electrolytes, low blood sugar, pregnancy, lack of sleep, brain tumours, or even strokes can result in seizures.
Family history and genetics also play a crucial role in it. About 30-40 percent of epilepsy causes are a result of genetic predisposition. First-degree relatives of people with inherited epilepsy have a 2-4 fold increased risk of developing epilepsy.
Lifestyle Changes Post-Diagnosis
46-years-old now, Akanksha, a storyteller, educator and corporate trainer, lives in Mumbai with her husband and two children. Her son is 12 years old and her daughter is 11 years old.
Akanksha recalled that pregnant women are advised to stay happy and calm, and it was her doctors who helped her in achieving that state despite the diagnosis. “Confusion was the primary emotion for me. I wondered, what did I do to get this?” she said.
Doctor Speaks:
Symptoms of epilepsy can be varied. Seizures can be focal (involving only a part of the body or limb) or generalised, causing loss of consciousness, and violent shaking of limbs. Even a transient blank stare (absence seizures), a loss of posture, or even frequent falls (drop attacks) in children are counted as symptoms.
While she was encouraged to not stress about additional bodily changes, such as weight gain, she was recommended some lifestyle changes to keep triggers to a minimum.
“I was recommended to not watch any violent content and only listen to happy music. Heavy metal and rock music used to be favourites of mine, but I had to curtail listening to them,” said Akanksha.
A stress-free and conducive environment was what the doctor suggested, to keep her seizure triggers at a minimum. At that time though, Akanksha worked as a senior PR professional, in a high-stress job.
Akanksha would go on to become pregnant a few months after her son was born. In between the two pregnancies, however, she didn’t have any seizures. Both her pregnancies were safe and the children were born healthy.
Also Read: Expert Shares 5 Essential Facts You Should Know About Epilepsy and Seizures
Doctor Speaks:
Epilepsy can be controlled by medications. For epilepsy to be considered resolved, there must be a 10-year period of being seizure-free, with the last five years including no treatment with Anti-seizure Medications (ASMs). For age-dependent epilepsy syndromes, the individual must be seizure-free and beyond the age limit for that specific syndrome. Drug-resistant epilepsy in selected patients can also be treated by surgery.
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The Importance of Caregivers
As the seizures appeared without warning, both of Akanksha’s children had to learn how to take care of her when she encountered them.
“As children grow, they also become more inquisitive. So then there would be questions like, ‘What is that bottle that Mama has in her bag?’ They’d be referring to my SOS medication. By the time they were five, they both knew what epilepsy was, the kind of seizures people have, and what to do during a seizure,” she said.
She described an incident when her son took on the role efficiently and administered medicines to her, while her husband guided him on a video call.
“As a family, we were open and transparent about these things,” she explained. “Being a part of my journey has made my children more empathetic. When they go to school, they may encounter classmates who may not be as active or slightly different. They were always the ones who reached out, made friends, and ensured that child felt wanted.”
Akanksha acknowledges her husband, family, and in-laws for the caregiver responsibilities, whenever needed.
Doctor Speaks:
If the seizures are controlled with medications, a person can lead a normal and healthy life. The person needs to avoid the triggers like missing medicines, excess alcohol, and lack of sleep.
Also Read: Expert Explains Treatment Options And Lifestyle Changes For Epilepsy
Dealing with the Stigma
The lack of awareness around epilepsy continues to be a problem for the entire nation, explains Akanksha.
“The moment you tell someone “mujhe mirgi aati hai”, they take a step back,” she said. “I don't know what they think that the person is going to do. In villages, you’d hear about babas who can cure you, which is not true. Epilepsy is a chronic illness that requires immediate medical intervention.”
She shares that some workplaces may be becoming more inclusive now. They understand that epilepsy isn’t a mental condition, but a person may get seizures and have a few limitations. However, there still is a long way to go.
“Many famous people like actress Fatima Sana Shaikh, and others well-known people in history, like French emperor Napoleon Bonaparte, have also had epilepsy,” said Akanksha. “People need to realise it’s an illness, but it doesn’t define you.”
Get Help and Be Aware
Akanksha emphasises the importance of listening to one’s doctor, for both the patients and the caregivers. “Listen to your doctor, have your meals and medicines on time, and adopt an active lifestyle,” she advises.
She said that she never experienced postpartum depression, but there came a time when she started feeling intensely lonely.
“No other person understands your journey. No one else can feel what you're feeling, right? No one can be you,” highlighted Akanksha. “There is a certain amount of loneliness that you feel. You do ask yourself ‘What have I done to deserve this?’. You wonder if anyone else is going through the same things that you are going through. It makes you start questioning things around you more.”
Akanksha dealt with these by finding a community, as well as making herself as aware as possible. She still claims to try and learn one new thing about epilepsy every day.