Vinay Jani, 37 from Delhi has been battling epilepsy from a young age of 21. He talks of how he has tackled the condition with fortitude, specially in the face of large scale ignorance.
I have focal seizures (complex partial) in which I lose my consciousness for 30-40secs due to a non-cancerous cyst which is in the left temporal region of my brain.
When were you diagnosed?
It was diagnosed in July 2005
What were the early symptoms?
Symptoms are still same but at an early stage I was not able read the aura before my seizures.. In my type of seizure, I feel an aura first and then Ilose consciousness for 30-40secs. I also bite my tongue many times during seizures. An aura is a feeling, an experience or movement in my body that just seems different. It is a warning before a seizure. (Not all seizures come with a warning)
Is there a history of Epilepsy in your family?
No, there is no history of Epilepsy in my family.
Please describe your experience of managing the condition?
Seizures are like uninvited guests, they can happen anytime. Initially when I was diagnosed with Epilepsy it was hard for me to even step out from my home alone because at that time nobody in my family knew how to deal with an Epilepsy patient during seizures. But now whenever I feel an aura, I immediately keep myself in a safe zone.
What medications are you on?
Presently I’m taking four Anti-Epileptic Drugs. I’ll definitely advise other PWEs to discuss the benefits and side effects of the medicines which has been prescribed to them with their neurologist. My epilepsy has also now become drug resistant because I have as many as 3 or 4 seizures a month. But I still take the medicines because if I stop my medication, then my seizure can graduate to a generalized seizure from a focal seizure. It happened to me in 2008 when I had moved to Ayurvedic medicines. A generalized seizure is considered a worse form of seizure. Some people, of course, face multiple types of seizures.
Were there any side-effects of the medicines for you?
Drowsiness, mood swings, nausea were some of the side effects I experienced and these are the common side effects for most persons suffering from this condition.But these medicines also impact our immunity. Therefore, it is important to maintain a healthy and active life.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
Being self-employed I never faced challenges on the work front. But on the personal front, I found it difficult to accept Epilepsy as a condition at the young age of 21. My real journey began when I learnt to accept Epilepsy in my life. This positivity helped me move on and learn a lot about my condition.
My advice to other persons with Epilepsy are:-
- Make a seizure diary.
- Have an open conversation with your neurologist.
- Take your medication on time.
- If seizure gets prolonged for more than 5 mins then immediately rush to the hospital.
Have you learnt anything in managing your condition that you wish you knew before?
I have learnt to deal with any situation in life patiently, after learning to manage my condition.
Are you part of any Epilepsy support group? If yes, has it been beneficial?
Yes, I’m part of the following Epilepsy support groups:-
- Ekatwam – Delhi
- Samman Association – Mumbai
Through these support groups I got an opportunity to connect with other people with Epilepsy and how they are battling with this less spoken neurological condition. Besides this, I also got to know that there are 40 types of seizures.
You have also been an athlete. How have you managed it with your condition?
Yes, I do endurance cycling and running. In endurance cycling I’ve done formats which have cut-off time till 75hrs and distance of 1000kms. I always take my medication on time. I also carry SOS medicine and whenever I feel an aura I give a signal to my co-rider to take a break.
Are there less percentage of men getting affected by Epilepsy? Has that been a problem for your treatment?
Epilepsy can cross the path of anyone in life at any age, irrespective of gender. But there is possibly less discussion about men suffering from this condition.
What kind of specialists do you consult and how often?
I consult a Neurologist since Epilepsy is a neurological condition. I meet my Neurologist once in two months for follow-ups and discussions.
What are the least understood aspects of Epilepsy?
India is a densely populated country where 70% resides in rural area. So, illiteracy is a challenge in rural part of country, which prevents proper awareness of the condition.
Secondly, many times people relate Epilepsy with black magic. So whenever a PWE gets a seizure, they bring a piece of onion or shoe for the person to smell.
Thirdly, there is lot of social stigma about this medical condition, again because of a lack of proper awareness.
Fourthly, very often PWEs have to struggle for jobs due to their medical condition as companies think they will not be as productive as normal people. Likewise, children with Epilepsy face same challenges for their education.
Have you had to make some changes to your lifestyle because of your condition?
Alcohol is a big NO for me. I also have to restrict my caffeine intake. Lack of sleep has also been a problem for me and a possible trigger for seizures.. My neurologist always advises a complete check which includes CBC, LFT, KFT, Vitamin-B, Vitamin-D test twice a year as all these anti epileptic drugs impacts on our body function as a side effects. So management of diet is also necessary.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
Yes, I tried homeopathy and ayurveda both, but neither helped me.
Has it been difficult emotionally to cope with your condition?
Yes, this condition is a difficult one, until and unless a PWE decides to fight back with determination.
How has your family supported you?
I got complete support from my family which includes my wife and my sister. I let my wife's family know that I had a history of epilepsy as I was living a seizure free life without medicines that time. I had a reoccurrence of seizure in 2016
Did you see a counsellor for support? Were you offered counselling by doctor?
No, I’ve never seen a counsellor for support. However, there are Neuro-psychological counselors there to assess a PWE.
What was the hardest part of the treatment? And what kept you going?
Social stigma and lack of awareness are the hardest parts which lead to low morale of PWE. My positive mindset and thoughts kept me going.
Is there any personal anecdote that you would like to share with us?
“One must try, everyday, to expand one’s limit” – Mas Oyama
