Suffering from Partial Seizures from childhood isn’t something one boasts about or even easily expresses. However, counting my blessings and having finally reached the road to recovery, I share my experience and strength of becoming an Epilepsy survivor. I share the knowledge and provide hope to those who may connect with these thoughts…
I had been suffering from simple-partial seizures from childhood, however I was never taken to a Doctor for them as they are hard to detect and childhood wasn’t so easy. Growing up, while “having an episode” (which at that time even I wasn’t aware that it was a seizure), in public I would just keep quiet and smile and not let anyone around me become aware that something was abnormal. Yet, on the inside I would pray and get myself cornered as I felt an aura around me, and soon as it was over, I would breathe deeply and try to gain my energy back. And with age, the episodes just increased along with the recovering period. My seizure occurrence varied from one a week to two-three a day; nothing was normal and my only question was to God: “What bad Karma did I do today for my ‘bad feeling’ to come?” And there were days when I would have several seizures when I hadn’t done any ‘bad Karma’!
However, just as my belief in God never left me, the answer to my ‘bad feelings’ also came through an unexpected source. At the age of 22, while writing for a local newspaper in California, I was asked to cover a conference on epilepsy in honour of Purple Day. While covering the event and reading the brochures, I was taken aback as I read through the symptoms of Epilepsy and the various types of seizures which take place, affecting anyone at any age.
After writing the article and submitting it, I came home that day with the collected pamphlets and told my Mom and elder Sister that I believed I was suffering from Epilepsy! It wasn’t welcoming news for them and they told me that I was just ‘over reacting’; although my Mom was more open to gain knowledge on the topic. However, nothing else took place and life went on as normal as ever, along with my seizures. Six months later I went to India for a family marriage, during which, upon my Mom’s suggestions, I got an MRI done to see if my fear of seizures is true. My MRI showed up with a scar on the left side of the temporal lobe. And so began my battle with Epilepsy!
From getting started on some heavy dosage of medicine during that trip, which kept me drowsy most of the day; to seeing a Neurologist after returning home, who was only convinced 99.9% with me having epilepsy; the battle began.
My journey began with first anger, then questions, and then finally acceptance of my seizures and learning more about epilepsy. I started with Lamictal and took it quite casually while undergoing bi-weekly EEG’s and even an overnight EEG. What came as a lesson to me for not taking my medicine seriously was my first Grand Mal seizure in 2005. At that time I was in India once again and was on a substitute medicine for Lamictal (which I had run out of during my extended trip).
My Mom was sleeping next to me when the Grand Mal took place. It was more terrifying for her than me, as she can still describe it in detail. As a result, I came back to California in October 2005 and had been switched over to Depakote, which I took properly, but still had partial seizures. Then came my second Grand Mal on my birthday in 2005, at my Uncle’s house while visiting my cousin. Once again in my sleep I had my GM and woke up to Ambulance Technicians asking me my name and age…to which I gave the wrong answers!
Soon after, my family became more serious and everyone got involved in making sure I received proper care and medicine for my epilepsy. I found a great Neurologist who put me on Keppra and Topamax which controlled my seizures dramatically and brought them down to just one to three a month, depending on my stress! So, I moved to India in November 2007 with my prescription and an ‘Ok’ from my Neurologist to continue living my life normally. However, the seizures continued and their intensity grew with time. They lasted longer, once over, my speech would be blurred for the first 30 seconds and I became more conscious of them. Yet, God had yet to shine his light on me:)
In 2009 I met a great person, who I give credit to this day as a sender from God to show me a new way of living…seizure free. Although, I met him with different intentions and told him about my epilepsy and medicines from the day we met; he opened me up to the possibility of surgery to become seizure free. At first, I wasn’t open to the idea as even Neurologists in US didn’t encourage it and always recommended medicine. However, after four years of consistent medicine and not much sign of improvement, I gave my friend the challenge of finding me an “awesome” Neurologist in India. Which he did nonetheless!
Thanks to his effort, I had the privilege of meeting Dr. Manjari Tripathi of AIIMS, who understood my case right away and suggested surgery as the best option due to my suffering from childhood and having tried most of the medicine. However, I was warned that the left temporal lobe is where speech and short term memory functions are in my brain, so “expect some side affects”. To which I replied, “Oh, now I get it, why I forget so easily and sometimes slur”! Soon after our first meeting, I checked into the hospital, had the required tests done. Then came the pre-surgery talk with the amazing surgeon Dr. P Sarat Chandra, who had operated over 600 cases of epilepsy surgeries and had studied at UCLA. During The Talk, my Mom began weeping, while I smiled, as it hadn’t hit home just yet that I had taken a life changing decision.
I realize each day that I was the lucky one from the very first day to only be suffering from Simple Partial Epilepsy. There are millions out there who suffer it worse than I did; however I wish and pray for everyone as I know and preach that knowledge makes all the difference. Learn and teach others about Epilepsy, share your and/or your loved one’s experiences, make others aware that seizures can be controlled, and for some even cured. One can live a normal life….I always have even before I knew I had Epilepsy, during, and now after. Knowledge is Power…one that continues to Grow, even more so as its Shared:)
Name withheld per request of author/contributor