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Submitted by PatientsEngage on 11 February 2019
Pooja in a white dress with  her son and husband on the deck of a ship

Pooja Mehta Nandi, 40, reflects on how she never ever let epilepsy seizures overpower or crush her - through school, work, marriage or motherhood. Read her motivational account.

I have been getting seizures since I was a child. Not random seizures, but those that had a fixed pattern of occurrence. Every time I had fever, I would get a fit. Right through my childhood, the two would invariably come together. As I had no other health problem, and my convulsions would stop as my fever subsided, my parents never linked it to epilepsy.

When I reached puberty, my convulsions began happening independent of the fever. Now they were linked to my menstrual cycle. I would have one or two episodes of convulsions every month along with my periods. This was definitely not normal. My parents took me to a neurologist for a check-up where I was diagnosed with epilepsy. So it was at age 13 that my family and I learnt that I had epilepsy. I was immediately prescribed Valparin, the basic medicine used to prevent seizures.

Epilepsy triggers

As I became a little older, I began to understand my seizures and their pattern. I realised that there were four definite triggers that led to my convulsions.

  1. Lack of sleep
  2. Stress
  3. Menstrual cycle
  4. Cough Syrup

I also gathered that my epilepsy was non-hereditary. There was nobody in the family who had epilepsy. I have a younger brother and a sister, who did not have the disease. I was alone in the family with epilepsy and I got used to my epileptic convulsions. At least once a month, I would get seizures.

Due to sudden attack of seizures, I used to land up in crazy situations in school, college and, subsequently, office. My life is peppered with incidences of my epileptic spells and spasms. I have fallen umpteen times at various locations. I have fainted in public spaces, collapsed on the road, had convulsions in bathrooms, tumbled on my face, bruised and cut myself. My parents have been called on many occasions, because I had lost consciousness in college, office or some other place. They would come, pick me up and take me home. I remember once I even had to undergo a surgery because I had hurt myself severely during fall.

I was never pampered

Such bouts of seizures may come across as disturbing, but thanks to my resolute upbringing I never let it interfere with my life. I have never been mollycoddled. As a result, I seldom felt sorry for myself. I would be off to school or work the next day after a seizure and fall. There was no question of sitting at home. After I finished college, I got a job. I worked for the Times of India initially and then joined Zee Network where I worked for 15 years.

Marriage and Epilepsy

I got married at age 24. It was a love marriage. I am a Gujarati and my husband, Debarjyo, is a Bengali. I had told him about my epilepsy status when I was dating him. I also told him that I may not be able to bear a child. He took everything in his stride and wanted to go ahead with the marriage. He even convinced his parents and family about marrying me.

Related Reading: Plan Your Pregnancy If You Have Epilepsy

Pregnancy and Epilepsy

When I was 28, my husband and I considered starting a family. I consulted my neurologist Dr. Jayanti Mani at Kokilaben Dhirubhai Ambani Hospital. She said that I would have to wait for two years till my body was totally cleaned of Valparin, my epilepsy medicine, to keep the foetus safe. The cleansing process started right away. I was taken off Valparin and put on some other drug. Unfortunately, that drug did not agree with me and I started getting bouts of depression. Dr Mani changed my medicine to something else that suited me more. Once the drugs had been adjusted, the tests began. My parameters were alright. Finally, Dr Mani gave me the green signal to go ahead with planning my pregnancy. At the outset, she had made it clear that 97% I would have a normal child, but there were 3% chances of the foetus getting affected.

I was in touch with my doctors, right through my pregnancy. They were excellent. My neurologist, Dr. Jayanti Mani and gynaecologist, Dr Shantala Vadeyar, worked beautifully as a team and closely monitored every milestone and progress. I did not have any problem those nine months and attended office till the last day.

Birth of my child

It was on 30th April, 2010, at age 31, I gave birth to my son. It was a normal delivery. By the grace of god, everything went off smoothly and my baby was healthy and absolutely fine. My husband and I were overjoyed. We named him Ved.

Now, when I look back over my pregnancy, I think I couldn’t have managed without the exceptional support of my husband, family and office. The doctors had particularly advised me to eat and sleep well to ensure good health during my pregnancy. My schedule and wellbeing became the top most priority in the house. There were no late nights. My mother-in-law would pack my tiffin with nutritious, wholesome food every day. I was very particular about taking my medicines. If I had to take a tablet at 9 o’clock, I wouldn’t delay even by a minute. I was extremely careful and followed the instructions of the doctor conscientiously.

The Zee TV office, where I worked for 15 years, was exceedingly accommodating. During my pregnancy, they relaxed my time. I could come to office by 12 and leave early. Since I was handling sales and required to travel, they transferred me to a desk job. After my six months of maternity leave, when I went back to work, I was made Vice President at Zee TV India. My new profile required me to travel at least three days a week. I managed initially, but over a period of time, I realised that the challenges of the work was slowly taking a toll on my health.

While earlier, I would get seizures only once a month, now the frequency had increased. Even then, I kept at my job. I worked for six more years. Now my son, Ved, had become 5-years-old. I realised I had not been able to spend much time with him. I finally decided to quit Zee.

Today, my son is 8-year-old. I have become a mini entrepreneur and set up my own firm. My epilepsy and seizures are much in control. The frequency has reduced to once a year.

Read: Sustaining Employment with my Epilepsy has been a constant struggle

Lessons of life

Sometimes when I sit back and contemplate, I think I reached where I am today in life because of the immense love and support of my family, employers and colleagues. But more importantly because I was raised like a normal child. There was no discrimination and extra sympathy for me. I was treated at par with my siblings. In fact, the attitude at home was always…‘So what if you have epilepsy. Don’t make a big deal about it. Just get on with life.’ I think that has been my biggest and most valuable boost in life to date. It made me bold, brazen and fearless. Epilepsy was secondary.

Read: With My Epilepsy In Control, I Go Mountain Climbing

 

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