Akanksha Patankar Mirji was diagnosed with epilepsy during the 2nd trimester of her first pregnancy when she had a grand mal seizure at home. A committed professional, she has since managed to handle her seizures with support from doctors, family and friends. She is an avid advocate in raising epilepsy awareness and runs marathons with the same purpose.
Please tell us something about yourself.
I am an Epilepsy Warrior. An easier way to define it is to state that I am a Person with Epilepsy who consistently fights a battle to raise epilepsy awareness and stamp out Epilepsy Stigma.
What were the early symptoms? What made you go to a doctor?
When I was in the 2nd trimester of my 1st pregnancy, I had a tonic-clonic or grand mal seizure at home. My husband was also present when this happened. The first thing he did was to call my gynecologist, inform her and take me to the hospital for an immediate check-up.
When and how were you diagnosed? What tests were done? How did the diagnosis come about?
Initially, I was diagnosed with eclampsia since the seizures started during my pregnancy. The tests performed included EEGs, Ultrasounds and Sonographies. Since this happened during my pregnancy, the doctors ensured that precautionary measures were taken to ensure my safety and the safety of the baby.
What do you think were the triggers?
In retrospect, there could have been multiple triggers. The Primary trigger according to me was Stress, as was identified by various neurologists, as well. This was due to the nature of my profession, and my innate nature as a professional who constantly worked at ensuring perfection and timeliness. (I worked as a PR professional. In fact, I was the Head of the Pune Branch office for one of India’s largest PR consultancies at that time. My team and the entire organization were extremely helpful and supportive during my pregnancy in the pre-diagnosis and post-diagnosis period of eclampsia and epilepsy.)
What was your reaction to the diagnosis? How and when did you break it to your family?
Initially, we were simply concerned about my health, and the health of the fetus. When the eclampsia moved on to an epilepsy diagnosis, we did not know what to expect. The truth is that we did not have much awareness about Epilepsy, apart from the fact that it was a neurological disorder. My seizures were grand mal seizures, so we only associated that with Epilepsy, and the focus was on safety, like ensuring that I never fell down during my pregnancy, and that I was turned on my side during a seizure. We didn’t know whether to be happy about our 1st baby or unhappy about the diagnosis. So, we chose to focus on the happiness and joy while reading a lot more about Pregnancy Epilepsy.
I belong to a 3rd generation Army family that is used to dealing with adversity, and my in-laws side of the family are civilians who have dealt with a lot of medical adversities, too. Both sides were informed about it immediately. I feel so blessed to be part of families that are extremely open-minded and knowledgeable. The information was given to them by my husband on the phone immediately after the diagnosis since we lived in Pune at that time, while my parents were in Delhi, and in-laws in Mumbai.
What happened next? (specialist referral, course of treatment etc.) How did it affect your pregnancy, child birth and post partum? What were your fears and apprehensions?
What happened next was getting a second opinion from a gynecologist. However, I wasn’t comfortable with the gynecologist who gave us the second opinion, and therefore we decided to continue treatment with the gynecologist that I had been visiting until then. My gynecologist ensured that I was taken care of. She referred me to various specialists which included one of the best neurologists in Pune and an excellent counsellor.
The neurologist performed a thorough check on me including EEGs. This was done in the hospital, not in a clinic. I was also prescribed Levetiracetam as an AED. There were supplements like folic acid that were part of the treatment given by the gynecologist.
A counsellor was recommended by my gynecologist to quell any doubts, nervousness or concerns we had regarding my mental and emotional health during pregnancy. It was suggested that we enroll in Lamaze sessions in case of early labor.
My gynecologist worked extremely well with all the specialists to ensure that my experience was a positive one, and there was no harm to the fetus or me. She even recommended a planned C-section rather than a normal delivery to ensure that there would be no seizures during delivery. She was simply brilliant and played a critical role in all interventions.
Post-partum was extremely smooth and easy. I had taken a complete break from work and focused on my baby for over 10 months before returning to work. I continued visiting my gynecologist and neurologist.
Did you have pre-existing health conditions?
No.
What stage are you in now? Has the epilepsy progressed?
Today, I have 2 children – a son aged 13 years and a 12- year- old daughter. I’m happy to say that my Epilepsy is well-managed with a very low number of incidents. In fact, it has been 1.5 years of being free of grand mal seizures and almost 1 year of being seizure-free.
What medications are you on? Pls mention all allopathic medicines and indications of each.
Currently, I am on the following AED’s:
- Oxcarbazepine 600mg – 2 times a day
- Clobazam 10mg – 1 time (night)
Apart from this, I now have Hyperthyroidism, so I’m also on 1 dose of 12.5mcg of Levothyroxine.
Were there any side-effects of the medicines? If yes, how do you manage them?
Over the past 14 years I have been exposed to various AED’s. Each have had their own side effects. For instance, when I was put on Levetiracetam medicines, it did not resonate with my regular personality, and moving to my current medication has had a positive effect on me. Similarly, a side effect of another medication was salt deficiency which was balanced with salt tablets.
Managing everything with a positive mindset in life can give us a feeling of gratification. Therefore, I have always chosen to manage side-effects in a positive manner based on recommendations by the neurologist.
When did you break the news to your friends and distant relatives? How did they take it? How do your friends treat you? Have you ever felt isolated?
We broke the news to everyone, instantly. As I mentioned, previously, I am blessed to have a wonderful family and circle of friends. They have always treated me as an equal and have a lot of love and belief in me, as they always did. They respect me and take pride in me for everything I have achieved in life – professionally and personally. I have never felt isolated in any manner.
How has this condition affected your professional life?
One day, on a normal working day after we had moved back to Mumbai, I felt that I was developing a fever. My neurologist had forewarned me about fevers being a trigger. I was getting ready to leave from office when I had the seizure. Everyone took care of me through the seizure and immediately informed my husband who came to pick me up from office. Before we reached home, I had 2 more seizures in the car. My husband drove me straight to the Emergency Room in the hospital. I was admitted there for almost a week.
My neurologist suggested a change in profession due to the nature of my profession. I remember laughing and asking him how he could ask me to change my profession after I had invested over 2 decades in it. He left the choice to me.
The triple seizure at work made me rethink my priorities, and I decided to change my profession and make a lateral shift. Today, I utilize my expertise in marketing communication, to teach post-graduate students pursuing mass communication. Also, as an avid reader, I have been interested in Storytelling. After moving on from my profession, I did a Diploma in Storytelling from Kathalaya in association with the University of Skovde in Sweden and the International Storytelling Centre in Scotland. I utilize this to teach storytelling to various audiences including Corporates. Apart from this, I utilize storytelling as a tool for various corporate training programmes in Team Building, Leadership and Communication.
What is your treatment pattern? Besides medication, what else do you do to heal and improve quality of life (diet, nutrition, exercise)?
Apart from medication, I am very careful about my emotional and physical health. For emotional health, I am an active member of a support group run by Samman Association, a part of the Indian Epilepsy Association (IEA). Interacting with fellow members and other caregivers is a delightful experience, and it is extremely helpful. This is my extended family. And I have developed some wonderful friendships with members over the years.
Samman has been a catalyst for change in my physical health. In order to raise Epilepsy Awareness, I participated in the Dream Run segment of the Tata Mumbai Marathon 2023. This was my first exposure to running. That gave me confidence to take the next step, which was to include running in my weekly routine. At Tata Mumbai Marathon 2024, I participated in the 10km segment and am thrilled to say that at the Tata Mumbai Marathon 2025, I ran the Half Marathon or 21km. Over the past 2 years, I have participated in multiple runs in Mumbai and even in Delhi. As a result of that, running has become part of my lifestyle.
Investing time in family and friends has also brought a lot of joy to me. Positive thinking is something that I started doing consciously, and now it is an intrinsic part of who I am.
Have you had to make some changes to your lifestyle because of your condition?
The only major lifestyle changes have been inclusion of exercise in my daily routine and ensuring that I eat, sleep and take my medication on time.
What are the complications from epilepsy and its treatment?
Epilepsy is perceived by different people in different ways. My seizures are controlled. Complications can arise from simple things like a seizure that can happen anywhere at any time. Therefore, I ensure that I carry my emergency medication (Midazolam Hydrochloride nasal spray) with me at all times. I have always believed in listening to my neurologist and acting upon the instructions given to me, and therefore, have managed to keep complications at bay.
Did you consider other treatment options like DBS?
No
What are your main challenges and what is your advice to patients who face similar challenges?
My advice to anyone with epilepsy is always to eat on time, sleep on time and take their medication on time. Listen and act upon everything that your neurologist tells you. Be open when speaking to your neurologist so never hide anything about yourself and ask any question that you have.
At times people doubt themselves and their capabilities. Always remember to love yourself because you are just amazing, the way you are.
There is a tendency to get depressed at times, and that’s when we need help. I strongly suggest joining a support group and going to a psychologist, counsellor or psychiatrist in order to overcome it.
What kind of specialists do you consult (including Physio/ Occupational therapist/ Psychiatrist etc.) and how often?
Apart from my neurologist, there are no other specialists I go to for epilepsy- related concerns. I visit my neurologists once in 6 months with all my pathology reports and a recent EEG. Apart from this, I visit a physiotherapist for athletic injuries whenever needed since I am an endurance athlete.
Did you have to travel outside your city for medical treatment?
My mother lives in Delhi, so we visit for long vacations. Also, we were there for almost 8 months during COVID. Therefore, I have a neurologist that I visit there during my stay.
Have you tried alternative medicines or therapies, like ayurveda, homeopathy, siddha?
No.
Do you have a family history of this condition?
No.
Has it been difficult emotionally to cope with your condition?
There have been time periods when it did get difficult emotionally. However, my husband has always been standing strong by my side during those times. Also, my family, friends and support group help tremendously. Running has assisted a great deal. However, a positive mind set trumps all!
Besides your husband, how has the rest of your family been a support?
My family has supported me in multiple ways. As mentioned, my husband has been a pillar of support – physically, mentally and emotionally. Both my children are aware about how to manage a seizure. They accompany me to support group meetings and even participate in initiatives like the Walkathon undertaken to raise epilepsy awareness. When I’m participating in a run, they are either cheering me on or waiting for me to get home. This year my son ran his first ever Dream Run to support the cause I run for, and my daughter shall join him next year.
They encourage me to take on challenges and persevere. This year, I was an individual fundraiser at the Tata Mumbai Marathon 2025, and even my extended family lent support in the form of funds. The funds raised are for SAMMAN Association, in order to conduct rural Epilepsy camps.
Did your epilepsy condition require special preparation for running a marathon?
Running to raise epilepsy awareness and stamp out stigma keeps me going. For every running event that I participate in, I wear a T-shirt with a message related to Epilepsy Awareness and Stamping out Stigma.
The only special preparation is to ensure my salt levels stay intact, and that I stay hydrated. Therefore, I ensure I always have electrolytes and water with me while running.
Any personal anecdote you’d like to share with us.
The building society we live in Andheri is a place where I have had at least 2 seizures in public. During the episode residents have rushed to my aid. There were people who believed that getting me to smell an onion or a shoe would assist me. However, my children knew the appropriate procedures and discouraged them from doing that. The residents who knew how to manage seizures in the appropriate manner helped me by ensuring that I was safe during the seizure. They even helped my children to administer the emergency medication.
The first time this happened in public, the residents asked my husband why he hadn’t told them about my condition previously. The question was posed by some of his oldest friends who went on to tell him that if only they had known earlier, they would have ensured that everyone in the building society knew the appropriate procedures in case of a seizure. They wanted to help make us feel secure, not to create any stigma about my condition. My husband had not thought about sharing it as my seizure incidences were low, however, it was a learning.
This made me realize that it is always better to be open about my condition. I strongly advocate raising epilepsy awareness to dispel the darkness of stigma. This shall only happen if we remove fear from within ourselves.
What are you worried about for the future?
There’s no point in worrying about the future as all it does is create anxiety. As is often stated, the past is history, the future is a mystery, so I enjoy living in the present moment!
With Moyna Sen
