When I was eight, I started fainting and having fits. The episodes became so frequent that my parents suspected that I had epilepsy. What confused them was that there was no history of it in my family and my symptoms were unlike those associated with the condition – I did not bite my tongue or foam in the mouth. At the age of 10, I was diagnosed with the rare Temporal Lob Epilepsy (TLE) at the Kenyatta National Hospital.
For the next nine years I attended clinic every Monday, where medics performed electrocardiogram (ECG) and Electroencephalogram (EEG) to note my heart and brain activity. They would also change my drugs or dosage as required. The drugs managed the seizures and the frequency abated. I would now have about two attacks monthly. The side effects of these medications included weight gain and suicidal episodes. At 15, I attempted suicide.
I also suffered memory loss and confusion of events. Often, I temporarily lose awareness of who or where I am. This can happen with or without convulsions. Some of my friends think I have selective amnesia. I can often tell when I am about to get an attack. Sometimes, I can deflect it by sitting or lying down. When it is happening, I am completely out but those who have witnessed it tell me that my body shakes for about two minutes. The longest I have been unconscious is three hours.
Stigmatisation
My openness about my condition has led to losing friends –no one wants to be saddled with the possibility of hospital runs while out having fun. This made me develop a fighting spirit - and erroneously associating every disagreement with rejection.
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Even my parents were stigmatised. My mother was referred to as 'Yule mama wa kifafa'. My family had no psychosocial support for the journey. I did not even know I had epilepsy until I overheard my mother's conversation with the neurologist during one visit. This changed when I joined the university and was referred to Dr Nabiswa. He taught me how to identify my triggers and monitor fits by keeping a seizure journal.
I have hurt my head before during a fall. Another time, I got a seizure while using a pit latrine. My leg got caught in the hole and broke. There was a time I felt a seizure coming on while crossing a road in Ruiru town. I fell down and woke up with none of my belongings, but thankfully, otherwise unharmed.
There has been kindness too. Once, I got a seizure while walking towards the University of Nairobi. A man took me to the MP Shah Hospital, paid for my treatment and waited till I was okay before dropping me off at home.
Carrying a pregnancy
Despite the doctor's caution, I conceived four years ago but I had to go off medication. I also had to take leave from work for the period that I was pregnant. This was to help reduce stress and limit the number of seizures I got. I had one in a matatu headed to Thika and was helped by a fellow passenger who was clinical officer. In the latter part of my pregnancy, my younger brother would take me to clinic after an attack as a precaution. Pain triggered a seizure during labour, necessitating an emergency CS. The medics prepared me for surgery but had to wait until I was conscious to administer anaesthesia.
For the last four years, I have been off medication. In that time, I have had only six seizures. Before that, I would get them twice monthly. I have recently graduated with a Master's in law from the University of Nairobi, and am currently preparing to join the 2018-2019 PhD class. Epilepsy will not hold me back and I can confidently say that with proper management, life can be beautiful.
What causes epilepsy?
Epilepsy is a neurological condition that affects the nervous system. It is also known as seizure disorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition.
Causes of seizures in epilepsy are mostly unknown but catalysed by disturbances in the electrical activity of the brain. They may be related to a brain injury or it could be hereditary, but most of the time the cause is unknown.
A mild seizure may be difficult to recognise. It can last a few seconds, during which you lack awareness.
Stronger seizures can cause spasms and uncontrollable muscle twitches, and can last a few seconds to several minutes. During a strong seizure, some people become confused or lose consciousness. Afterward, you may have no recollection of the episode.
Epilepsy may be triggered by high fever, head trauma, very low blood sugar, alcohol withdrawal among other factors.
Treatment prescribed will depend mainly on the type of epilepsy, the frequency and severity of the seizures, the person's age, overall health and medical history. Majority can be controlled by anticonvulsant drugs.
Surgery may be an option if the seizures cannot be controlled after trying out two or three medications.
Glance box
First aid
1. Loosen the clothing and lay the person on their side.
2. Raise their feet.
3. Insert an object between their teeth so they don't bite their tongue –ensure that the object cannot be swallowed.
4. Take them to a doctor as soon as you can.
