MY EPILEPSY JOURNEY
–Zelam Khandait

I first experienced epilepsy when I was 17. I was in 12th standard. After coming from college I had breakfast and started my homework. When I was doing my homework, suddenly pen fell from my hand and I was staring at the pen. My mother saw it and came to me and she said “The pen had fallen from your hand.” Then I took the pen and started doing my homework.

The next day when I was having breakfast a slice of bread fell from my hand. My father saw it and he said your bread has fall from your hand. Knowingly and unknowingly things started to slip from my hand. Sometimes, a glass of water, a cup of coffee or tea or lunch or dinner plate. Then I started making hand gestures and murmuring. When I slept at night, I started rocking my head and sometimes my head used to bang on the bed.

These jerking and involuntary movements started increasing day by day. This only used to happen when I eat food or drink tea or coffee. Sometimes my mother, father and sisters used to observe me and make videos to show me. As I am suffering from asthma since childhood, my family thought that this is
happening because of asthma. Then my mother took me to MD doctor. The doctor checked me and said we need to do MRI scan. The doctor referred us to a neurologist, Dr.Hunnur. We went there
and the doctor checked me and asked to do EEG.

Dr.Hunnur gave medicines. I took the medicines for 2 months. As there was not much improvement, my family asked the doctor about the permanent solution. However, he said that I will have to live with this and said “Leave it on God”. Then we went to another neurologist Dr. Shetty. He checked me and gave some medicines. After a couple of days the doctor said “She is overthinking”.

After completion of my education and job search, me and my family had a discussion about my jerking and involuntary movements, lips murmuring and hand gestures. They said it can affect your work, marriage. Then my father called my uncle who’s a doctor and he recommended Dr. Nadir Bharucha from Bombay Hospital, Churchgate. My family booked an appointment with Dr. Nadir Bharucha and we went. He checked me and asked to do MRI and EEG. We got the next day’s appointment for EEG and MRI. After a couple of week, the reports came and the doctor said I have focal epilepsy. A small part of my brain has
affected. Doctor said not to worry. He gave medicines and other instructions. After taking medicines prescribed by Doctor Bharucha hand jerks, murmuring and rocking of head while sleeping has completely stopped.

Doctor Bharucha also advised to meet Doctor Urvashi Shah. Dr. Urvashi Shah gave her report which was shown to Doctor Bharucha. Simultaneously, I also took treatment from Doctor Kersi Chavda, Consulting
Psychiatrist from Hinduja Hospital. Right now, I am taking treatment from Doctor Bharucha and Dr. Sujay Prabhugaonkar, Consultant psychiatrist. In my epilepsy journey, for sometimes, I did a corporate job but I left because there was toxic culture. Now, I am appearing for government exams. I recently participated in TMM marathon and attend Samman support group meetings.