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Submitted by PatientsEngage on 26 June 2019

Priti Raman Vishwakarma, 27 has been battling Epilepsy with courage and fortitude. She recounts her experience of having handled the challenge head on and how she also leads her life on her own terms.

I have been suffering from JME (Juvenile Myoclonic Epilepsy) which is a form of Epilepsy. This is possibly a mild type of Epilepsy. However, a patient suffering from JME needs to take medicines for life. The doctors may reduce the doses as per requirement. But it is impossible to discontinue with the medication. In Epilepsy, you can skip meals but not medicine. JME is a condition where your brain stops getting adequate blood circulation due to lack of sleep or stress; this is the major cause of JME Epilepsy attacks.

When were you diagnosed?

I was in the 10th std studying for my final exams and suddenly I was in the hospital and the doctor diagnosed it as Epilepsy. However, my family wasn’t very sure as I was doing fine without the medicine as well.

What were the early symptoms?

Surprisingly, I don’t get any symptoms before attacks. But once I get an attack, I shout; my whole body becomes stiff as wood. I go unconscious during the attack, and when I regain consciousness, I don’t remember anything regarding the attack.

Is there a history of epilepsy in your family?

I am not quite sure. But epilepsy cannot be called genetic everytime. There are other causes of epilepsy too.

Please describe your experience of managing the condition?

Initially after my 1st attack in 2007, I was doing fine without medicine also. No one ever imagined that I will again get an attack after 10 years. When I got attacks last year about 2-3 times, I was personally very disturbed. I even got stitches on my lips as I fell down very badly in my own house during the attack. The 2nd attack was at the airport where I had gone to use the toilet and luckily I got an attack when I was outside the toilet.

Professionally, I am a travel planner which can be very risky for an Epilepsy patient as most of the time I am travelling without my family. Even the doctor said, it’s going to be very tough for me. I too was quite worried about myself as these attacks can take place anywhere. I have been lucky so far to get these attacks mostly where I am surrounded by my family. But what if I get these attacks when I am alone? These questions were personally troubling me a lot. What also bothered me was the stigma attached to Epilepsy and that everyone around me wanted me to hide the condition as it would pose a problem to fix up my marriage. Society looked upon it as something to be ashamed of. For me, it was just a medical condition.

What medications are you on?

I take levi pill 750 mg twice a day

Were there any side-effects of the medicines?

According to the doctor, it can harm my memory power with time. I might not have a very strong memory in future.

What were some of the challenges you faced and what is your advice to patients who face similar challenges?

Since I got my second attack about 10 years after my first attack, my family assumed it to be under the influence of some black magic. And it is not just my family who nurtures such thoughts. I have seen similar cases with other girls who suffer from epilepsy. And I can only put down this mindset due to a lack of awareness, which is really pathetic. We don’t have much information about Epilepsy because the society thinks, it’s a shameful condition which you should never disclose to anyone. Otherwise it will create problems in your marriage and for your marriage.

I supported my medical condition and accepted it. Hence doctors showed faith in me that I will take care. However, there are people who easily give up because of society pressure. Once you give up, don’t expect others to show faith in you. I have seen one girl quitting her studies because of Epilepsy --so she decided to give up on her dreams and instead pay more importance to the stigma attached to it. 

Remember, everything has its solution. You just need to measure your steps up to it. I don’t say, I am quite fit. But I can proudly say that I have chosen to try and not give up. In Epilepsy, It’s very important to accept your medical condition rather than feel guilty about it. It’s not your mistake and you don’t have any control over it. Talk to people about it and break the stigma. You are certain to feel the difference.

What kind of specialists do you consult and how often?

I was earlier consulting a general physician.  There are 17 types of Epilepsy and we don’t know about our type of Epilepsy which only an expert can diagnose. In my experience, general physician doctors are not always equipped to handle epilepsy cases. So now I consult an Epilepsy expert who has handled many cases of Epilepsy.

Every year you should do your EEG (or as frequently as the doctor advises) and meet the doctors so that he/she can explain to you about the improvement. You should never take medicines blindly.

You have a very active job. Please tell us about it and how you tackle your professional life.

I am a professional travel planner and a trek leader, running my own venture which is specialized in conducting tours for only women specific. I also travel solo to different parts of India for my own personal growth. It’s been 3 years now, and I usually travel every month despite the risks of Epilepsy.

Do you face challenges when you are travelling? How do you manage them?

I travel to places where there is a hectic travel schedule and in my Epilepsy condition, I cannot take stress and cannot afford lack of sleep. Hence I ensure 8 hours of sleep for myself, that I eat healthy food and that I also meditate to reduce my stress level. Whenever I go to any high altitude area, where there is a lack of oxygen, I make sure that I have my medicine and I also drink plenty of water to avoid any attacks as lack of oxygen is a risk factor.

Myths of Epilepsy

What are the least understood aspects of epilepsy?

People think only medicine will resolve Epilepsy attacks. However your sleeping pattern, eating pattern also play a very important role in managing Epilepsy. I was taking medicines, but I didn’t maintain a proper sleeping pattern and eating pattern which resulted in another attack. So please understand, only medicines can’t help you. Right life style is very important.

Have you had to make some changes to your lifestyle because of your condition?

I have made several changes in my life style. I never compromise with my sleeping hours. I do yoga and exercise 4-5 days a week. I take food which is full of protein and calcium like milk, eggs and nuts. You need to maintain a balanced life.

Have you tried complementary medicine or therapies, like homeopathy or yoga?

I believe Meditation and yoga can help you a lot to improve your condition. However, I have never tried Homeopathy or any other medicine apart from my doctor’s prescribed medicine.

Has it been difficult emotionally to cope with your condition?

As I have mentioned before, yes it was emotionally very difficult as everyone is scared about their lives and would like to lead a normal life. At times,  I would feel scared to stand at the doors of local trains thinking what if I get an attack and I fall down. What if I am doing rafting or any other adventure sports and I get attacks during that. I too have a bucket list to accomplish. But because of Epilepsy, certain things are not possible. However I feel, it’s okay. Whatever I am doing right now also is like an example for so many others like me as I have seen people quitting their jobs because of Epilepsy.

How has your family supported you?

My family is my biggest strength and because of that I feel , I am so strong to put across my opinion boldly and that I also have the courage to break the stigma attached to Epilepsy.

Did you see a counselor for support?

No I did not. But I feel, if you feel like meeting a counselor, you should meet. 

What was the hardest part of suffering from this condition? And what kept you going?

When I got stitches on my lips, I looked at myself. I was shaken somewhere thinking I just fell on the floor and it happened. What if I fell down from the mountain during my trek, I might lose my life. However then I thought, let’s not concentrate too much on problems and let’s concentrate more on solution. I have worked hard throughout my life to start my own venture; I have inspired people to travel. I can’t give up easily. I thought, Epilepsy can’t put a stop to everything. The more you will try, the best you can give.

I have met people suffering from Epilepsy and I feel, everyone is fighting with the social stigma attached to it.

It’s very important to break the stigma and fight. You’re as normal as any other human being.

 

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