I am Sarah Nakakande, 29. I clearly remember the first time I got an epileptic attack. The year was 2000 and I was in Senior Four. It was a Sunday and I was in church with my family when I started feeling weak. But before I could digest what was happening, I lost consciousness. Unlike most people, my type of epilepsy was not inherited. In fact, I brought it onto myself. But after medicating for over six years, I have now healed.
A year or two before my first attack, I was infected with malaria but I never completed the dosage. In fact, I had malaria on and off throughout the year. Every time I fell sick, I took tablets but didn’t complete the dosage only to resume days or weeks after when I felt sick again. The doctors said continuous failure to complete my medication affected my brain. That is what made me become epileptic.
The first time I got an attack, I didn’t see it coming. But as time went on, a physiatrist explained to me what to expect when I was about to get one and what would escalate chances of getting an attack. I was also taught how to control getting attacks.
Seconds before an attack, I feel very weak and I see very bright stars moving all over the place. No wonder my mother says I open my eyes wide and move them from side to side like there is a moving object that I am looking at. Then I shake involuntarily and so hard but gain consciousness within three minutes. However, after any attack, I am left feeling so weak that I stay in bed for two days.
The attacks occurred whenever I was completing a malaria dosage especially when it was Chloroquine tablets. Chloquine aggravated chances of getting the attack, I had to stop taking it. I was told they are also caused by too much excitement. Thankfully for me, I am reserved and love to stay in calm environments. So chances of getting overly excited are close to none.
But I was stopped from doing other things that excite the brain like swimming, driving and taking alcohol because epilepsy is directly connected to the brain. I also had to make sure the brain is high on glucose. Therefore, I always carried sweets, biscuits and sweet bananas with me.
The first doctor we saw gave me medication but it was not effective enough. It is the second doctor who prescribed Sodium valproate –the tablets being given to the children with nodding disease that worked. I used to take one tablet a day and each cost Shs1,500. I also used to take paracetamol tablets thrice a day.
The medicine and illness came with a number of side effects. One was memory loss and it kind of slowed down the speed at which my brain worked. It was like a sheath was covering my brain.
I would read and not understand immediately and most times forgot what I had read a short while after. Yet the doctor told me not to over read. Her instructions were that I rest every after 30 minutes of reading. That meant I ended up spending so much time on a subject or topic. I also had to read from a quiet place so the library was convenient.
Sometimes I ignored the instructions and read for too long only to faint. This earned me a nickname among my peers – book worm. I ignored them and begun reading right from the beginning of the term so that I have ample time to summarise my notes. Those came in handy when I was revising for examinations since I forgot most of the things. It was so frustrating to read and the next time I get the book to revise I find I don’t remember a thing.
I forgot so many other things. So whenever I kept something that I knew I wouldn’t need in a while, I told someone where I had kept it so they would remind me if I forgot. My mother says I also used to forget small things like where I put a cup a few minutes back and it happened frequently.
Foregoing my dream course
The doctor told me to avoid stressful activities. That also meant not over reading. So when I was joining university I could not do the course of my choice because it was difficult and would require me to read a lot. So I instead did an easier science course. The doctors were not so comfortable about me insisting on doing a science course and were so happy and relieved when I graduated early this year.
With the new medication, I barely got attacks. In fact, it was mostly during examination time because then it was hard not to over read. I got an attack while doing my final A-level examinations.
But the worst place I ever got an attack from was when I was going to a shop. I had just recovered from malaria then. And as I walked to the shop, I got an attack and fell in the road. Thankfully, the shop was not so faraway from home and the people around knew me. They carried me home.
One day during a review, a doctor told me that if I ever wish to give birth, I should see a doctor before I got pregnant. That made me curious and I read the side effects of the medicine for the first time.
I found out that they can make you sterile or give birth to a deformed child. My mother knew that all along but she did not tell me so that I can take the medicine and save my health first.
But I was not scared, the God I serve is mighty, I knew he would be there when I needed or wanted to give birth. The tablets have greatly improved my health; the last time I got an attack was 2005.
The doctor had told me that since my kind of illness was not hereditary, chances of healing after taking medication were high. After six years of swallowing tablets every year, I got tired and decided to stop taking the tablets. It was not instant but rather gradual. At first, I took thrice a week, then reduced to twice. After a while, I would take only once a month and later stopped completely.
After not taking medicine for over a year, I got pregnant. The doctor told me the baby would not be affected since I had been off medication for a longtime. And that was accurate. I gave birth to a baby girl over two months ago and we are both in good condition. I must have gotten healed.
Now, I am an advocate for dosage completion and I am against self-medication. Failure to finish a dose or get appropriate medication opting for self-medication can cost you your life.
As told to Brenda Banura
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