700 days Of Epilepsy- Part 2

Please read part one to clearly understand this post…

 

Did I mention that I was not allowed to drive? It made me pretty much dependent on someone if I had to go out. This made life a little difficult when I had to go around in the city for my own needs. I reduced movie time in theatres because the flashing lights were giving me a headache. Things were pretty difficult when it came to commute to and from work. I had to travel around 40km everyday. Availing a cab was expensive, but that was a price I was willing to pay. Except that at night when I am coming back home, I can’t sit with my eyes open. The flashing lights of the traffic started giving me  jitters. I was dreading everyday about waking up and going to work. I didn’t want to collapse and create a scene. Every time I got an attack while I was with friends,  I would apologise for ruining their day. I felt sorry that they had to go through it. The sad part was none of my long term friends have seen me seize and fall down. They never understood my fears or my complex. I don’t blame them, but I needed support.

Slowly, the frequency of the attacks increased.

I was facing more problems on a personal front. People around me made the wrong connections and assumed that I was doing the things I did for someone else. No one understood that I was doing it for my own convenience. To get over the insecurity, I started covering my head and wearing clothes that were long. I had to take more days off work due to my untimely attacks.

When I say that I have been through real shit, I am not boasting. Although I have never been physically abused, I have felt that would have been better because that would at least heal at one point of time. My college life was filled with mental torture and nothing else that I am still amazed at how I managed to get out of it alive. But even through all that I fought through every single suicidal thought I got. I reminded myself that I had no rights to end this life I am blessed with.

So when that particular night in March when I went through the stocks and picked out all of my sleeping pills and anti-depressants I did not know what was going on in my head. I was in a dazed state. I remember that much. I took around 60 tablets. I didn’t stop there. I sent whatsapp audio messages to my closest friends at that time. I told them how much I loved them. Those messages saved my life actually. One of them got suspicious over my slurred speech and intimated my parents somehow. I was taken to the hospital at around 2 am I guess. Or thats what my dad said. I have no knowledge of anything that happened for the next two days.

When everyone around me, including the nurses there, kept advising me, one junior doctor alone pointed out that one of the adverse side effects of my medication was depression and suicidal thoughts. Everything made sense to me then. My father fought with the neurologist as to why we were never informed about such side effects. My family doctor could do the next best thing. Refer me to a different neurologist.

I started going for therapy. Like that helped. After every therapy session, I would feel even more pathetic and miserable than I already was. She was rekindling every memory that I have worked hard to ignore and forget.

Not being able to handle my worst moods the very people I called friends left me. So much for being supportive. Not like they tried to be supportive before that. I still remember the day my best friend of 10+ years told me over phone that he didn’t want my friendship anymore and I seized immediately. I remember lying next to the refrigerator not able to move a muscle. It took me more than 15 minutes to get up and lie down on my bed. No one was at home that time. My attacks were accompanied by twitching of my arms and legs. twitching that would linger for hours together.

It got so worse that after a point even the slightest peak in my emotional chart would make me seize. We had gotten opinions from three more neurologists who were the best and specialized in Epilepsy. Not even one of them considered this to be a manifestation of the drugs they were giving me. I was prescribed the same compound but various brands.

One time I was riding pillion with a friend and fell of the bike seizing. Just to check if I had any internal injuries, we took MRI and saw that the very anomaly that lead to all this was not there. The results came out as normal. When I questioned the doctors about it, they said it must have been a mistake.

So  the first MRI might have been a mistake, and I might have been going through hell for nothing. I had to take off work because of it. I had to stop going out because of it. I lost control of my left arm and leg because of it. I could only partially control my arm. I would have to drag my left foot for a while. I had to keep my feelings under control. I cannot get angry or sad. Even crying would make me seize. I was not allowed to cry. I was never left alone. But imagine being surrounded by people and still feeling so lonely. As if you are screaming your lungs out for help and not a single soul could hear you. That was how I was feeling. I didn’t like it one bit.

I hardly slept. I was turning into a zombie.

I was taking around 13 pills a day. I still couldn’t sleep. I had to stop going to work for a while. Thinking that would help. But my helplessness just increased even more. I was getting frustrated.

And then I refused to go to any doctor. Not that any of them really tried to change anything in my life. Every hospital visit was just adding to my anxiety.

It was so nerve wrecking that one night I took a week’s worth of night medication. I just wanted to sleep. I was that desperate. Again a visit to ICU. Except that this time I was fully aware of everything that was happening around me. Gosh! Those rice tubes are the worst torture you can endure man!

My psychiatrist spoke to my father and asked him to stop all of my seizure meds. Finally one person made some sense. Because the second time, she knew I was not trying to kill myself. I knew what sort of dosage would knock me out. So their final decision was to stop all anti-seizure medication, anti-depressants and sleeping pills.

 

Its been two months now. I haven’t had a single attack so far. I am sleeping well. I am not under any medication now. I am able to go about my normal life now. So does this prove to all the doctors out there that I am not epileptic?

Either I was cured midway and none of them really knew how to find it out or I was never epileptic to begin with. I am no medical master mind. But I do know a little science and biology. I feel better now. A little weak, but better. I can now do a lot of things I was so scared to do before. I can travel without fears of getting an attack. Go alone to movies. Go for a long walk. Go to the terrace when i want to. Get angry or sad without the fear of collapsing any moment.

But still even the smallest muscle twitch scares me. The fear is still there. But then I know I am better. And slowly I will get rid of this fear for good.

 

I just have a few questions to the doctors. Would you have let me suffer this much if I were your daughter? Would you have thought of any alternative diagnosis? Would you have considered a patient’s questions and answered them? Listened to a patient when they say that the attacks have increased after they started the treatment? If the doctor had warned us about such adverse side effects we would have informed him and done something about it before it got out of hand. Would that have changed anything in my life now? Why didn’t any of you really try to help me?

Finally…

Can you give me back the time and all the energy I lost in this treatment?

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6 thoughts on “700 days Of Epilepsy- Part 2

  1. I am glad first of all that you have finally escaped the wrong diagnosis. When I began reading the first part, I could guess what must have happened. When my son was one year old, he didn’t begin to start walking. He wasn’t able to keep his left heels on the floor. The pediatrician made us go through the same MRI and neurologists consultation as in your case. We took multiple opinions from best child specilist neurologists in Chennai. And all that they could say was he need to be on the wheel chair for the next several years. My dad didn’t trust the doctors and he asked me to take my son to my parent’s home. In two weeks time he could walk perfectly! He is nearing three. He is absolutely normal, in fact he can cycle, swim and am writing this after doing a small trek with him. Till today I don’t know what the doctors even thought about this whole thing.

    Liked by 1 person

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