Overcoming Drug Resistant Epilepsy and Moving ahead in Life–Vinay Jani
I got diagnosed with epilepsy in July 2005 due to a cyst in the left temporal region of my brain due to which I used to get focal seizures (complex partial). Now if I tell you that I’m an IBE International Golden Light Awardee 2021, Purple Day ambassador, Ultra Randonneur, Super Randonneur and Marathoner, I am sure you must be surprised. Not only this, I also established my own business in 2004. But how did I overcome drug resistant epilepsy?
My experiences range from starting a wrong treatment and having a generalized seizure to living a seizure-free life with medications to having a recurrence. As time passed, my epilepsy became drug resistant.
Initially, I started homeopathy medication and then I switched to Ayurveda. In December 2008, I got a generalized seizure and I was hospitalized for a few days. Back then, my doctor assured me that if I live a seizure-free life for three years then I won’t be getting any seizures in future. My neurologist prescribed me two medications and I lived a seizure-free life for three years and then he started withdrawing my medication which took another six months. Yes, I started living a seizure-free life without any medication.
But after a year or so, I had a recurrence of seizure in 2014 and I contacted my neurologist again. He resumed my medication but this time seizures were not getting controlled by those two anti-epileptic drugs and I was getting 2-3 seizures in a month. Later on, he added one more drug but I was still getting seizures.
While exercising in September 2016, I had an accident (non-epilepsy) due to which I got a fever and it even aggravated my second generalized seizure. As a result, I was hospitalized again for a few days.
After getting discharged from the hospital, I decided to change my neurologist and started consulting Dr. (Prof) Manjari Tripathi at AIIMS, Delhi. She started withdrawing my medications and added other medications but seizures were still not getting controlled from any of the drugs which were added. Within three years, she added almost 20 anti-epileptic drugs and also removed those medications which were not helping me in controlling the seizures.
At times, I had one or two seizure-free months with the help of adding a new AED but after that again I used to get a seizure. I was taking four anti-epileptic drugs that time and the prescribed dosage was high. In September 2019, my neurologist advised me to think about surgery as I was getting seizures even after taking the medications timely and my seizures could not be controlled even after taking various combinations of AED’s.
After having a detailed discussion with my neurologist Dr. (Prof) Manjari Tripathi, I underwent the following tests to ascertain if I was eligible for the surgery or not:
1. Video EEG – A video EEG (electroencephalograph) records what you are doing or experiencing on video while an EEG test records your brainwaves.
2. MEG – Magnetoencephalography (MEG) is a non-invasive medical test that measures the magnetic fields produced by your brain’s electrical currents. It is performed to map brain function and to identify the exact location of the source of epileptic seizures.
3. MRI – Magnetic resonance imaging of the brain uses magnetic resonance imaging to produce high quality two-dimensional or three-dimensional images of the brain and brainstem without the use of ionizing radiation or radioactive tracers.
4. Neuropsychological Assessment – A neuropsychological evaluation is a test to measure how well a person’s brain is working. The abilities tested include reading, language usage, attention, learning, processing speed, reasoning, remembering, problem-solving, mood and personality and more.
5. Functional MRI – It measures brain activity by detecting changes associated with blood flow. This technique relies on the fact that cerebral blood flow and neuronal activation are coupled. When an area of the brain is in use, blood flow to that region also increases.
After all these tests were conducted, my neurologist had a discussion with Dr. (Prof) P. Sarat Chandra in AIIMS, Delhi. They reviewed my case along with these reports and Dr. Chandra gave a green signal for my surgery. I underwent a surgery which was led by him on March 15 this year.
Since my epilepsy became drug resistant and after conducting all necessary tests, I underwent a neurosurgery to live a seizure-free life. At the time of discharge, my neurologist advised me to take a short break from endurance sports or any other intensive sports until my complete recovery.
I did an epilepsy awareness Brevet of 1000 kms in the month of Dec 2021 which was supported by NGO Ekatwam, a Delhi-based NGO working for persons with epilepsy. For those who are unaware, Brevet starts from 200 kms and Ultra starts from 1000 kms. During the meet and greet event organised by Ekatwam, my neurologist Dr. Manjari Tripathi said epilepsy is one of the most common neurological issues in which 75% cases can be controlled through medicines and the remaining 25% cases can be controlled with the help of surgeries.
It’s been 3 months now and I haven’t got a single seizure. Now I am able to spend more time with my family, focus more towards my career and most importantly as an epilepsy advocate, I’ll be spreading more awareness about epilepsy.
My advice is that if somebody is facing drug resistant epilepsy, then he/she should definitely think about surgery as an option after having open discussion with family. Do take opinions from doctors, check whether you are eligible or not for the surgery and if you are, then you should think about surgery and look forward to a seizure-free life.