Brainwave – The Irish Epilepsy Association – Shedding a light on epilepsy

Just a "routine vaccination"
I was born in South Africa in 1975. My mother described me as a "low-maintenance" baby, easily consoled and readily entertained. All that changed when, at the age of three months, I was given a routine vaccination and ran a high fever a few hours later. Despite my mother's efforts to bring my temperature down, I went into a febrile convulsion that would not stop. At the hospital, I was given a lumbar puncture as a precaution against encephalitis and the doctors reassured my parents that prolonged febrile convulsions were common in infants, particularly after they received a vaccination.

About a week later, my mother noticed that the skin around my mouth had turned blue and took me back to the doctor, who suggested that I was "breath-holding". Then one day she found me lying on the floor, apparently unconscious, with a half-eaten chocolate in my hand. This time she had me tested for epilepsy and was relieved but perplexed when the doctor gave her the good news that my EEG showed no signs of epileptic disturbance. He speculated that I could be a diabetic, given that the "episode" had occurred while I was eating chocolate. Just in case, my mother took sugar out of my diet but my peculiar habit of "breath-holding" and suddenly falling asleep continued.

New hope in Canada
When I was two years old my family moved to Canada. To my parents' relief, a doctor in Toronto diagnosed me as suffering from "petit-mal epileptic seizures", despite there being no trace of my condition on the EEG. He expressed confidence that my seizures would easily be controlled by an anti-convulsant, like Phenobarbital and assured my folks that I would probably stop having seizures by the time I reached puberty. This was not to be however, as my seizures stubbornly resisted every type of anti-epileptic medication that he prescribed. In light of this fact, as well as my persistently "normal" EEG results, he eventually conceded that he may have misdiagnosed my disorder.

My parents were exasperated and I was frightened by the fact that the "grown-ups" did not know what was wrong with me. Desperate for answers, they turned to advice from an "alternative therapy" organisation that my entire family belonged to and through which my parents had met for the first time. The advisors of this organisation were confident that my seizures were not a physical disability but rather, a symptom of a mental and spiritual disorder. The feelings that I told them I experienced during a seizure, like déjà-vu, the "lifting" of my spirit and intense fear, all seemed to add credence to their theory that I was not suffering from a physical illness. On their instruction, I was subjected to a series of unique mental and spiritual exercises, which I did not enjoy because I felt that I was somehow being blamed for my condition. Still, we all hoped that I would never have another "very big faint" again if I went along with the alternative therapy.

Even though the physical nature of my seizures was being questioned, I had begun to distinguish between different categories of "faints" that I experienced. A "little faint" felt like my spirit was rising up through my body. It was a rather pleasant sensation, light and peaceful, and was usually accompanied by the uncanny feeling that I had "been there" or "seen that" before. Sometimes the aura would evolve into what I called a "big faint", in which case the pleasant feelings would give way to the intense, undeniable knowledge that something in my immediate environment was going to attack or kill me. Usually I would run to my mother, complain that I was "cold" and then find a place to sleep.

Although this was an unnerving experience, it was nothing compared to what I called a "very big faint", which overwhelmed me without warning and with a sudden intensity that left me lying on the ground, in a seemingly unconscious state. People have told me that during this experience, one of my arms would fold into a twisted position, my head would turn towards the ceiling and I seemed to be chewing on something that I was unable to swallow. Then I would crumple to the ground and fall asleep. When I awoke, I usually felt quite sick, had a headache and could not remember anything.

Returning to my roots
It was the "very big faint" that left me convinced that I had a physical disorder and that my seizures were not a mental illness or a spiritual phenomenon. However, the confusion surrounding the underlying etiology of my seizures and poor memory had begun to impact on my self-esteem. I felt ashamed that I was different and lived in fear of my own mind and soul. I also struggled with my school work and, although I excelled in Maths and Art, I found it difficult to read and remember any facts.

Then, at the age of nine, my parents decided to relocate my family back to South Africa. Trying to integrate with my South African peers was made more difficult by a small group of girls who sensed my insecurity about my condition and spread rumours that I was "demon possessed", not epileptic. I had just started to think that life was not worth the bother when, at the age of eleven, my hormones came to my rescue. A few days before my first menstrual period, I experienced my first two tonic-clonic seizures. My parents were devastated but I was secretly overjoyed because I felt liberated by the power of my two tonic-clonic seizures. Now everyone HAD to believe that it was epilepsy! My neurologist recommended that I take the contraceptive pill to prevent any further tonic-clonic seizures and his advice seemed to work. From then on, I was hit with severe complex partial seizures and drop-attacks, always just before my period or when I was studying for exams. My concentration and memory suffered as a result and I decided to make it my mission to prove that having a poor memory did not make me "stupid" or "slow". I developed my own study techniques, which took a lot of preparation but enabled me to rapidly transfer large amounts of information into my short-term memory, a few hours before my exam. I knew that my brain would not move these memories into long-term storage and that they would be lost by the end of the day, so my aim was to make maximum use of my short-term, working memory instead. I pushed my short-term memory to its limit and graduated with a Bachelor of Commerce and Economic honours degree.

"Sometimes the best is saved for last"
While I was studying at University, an MRI scan revealed the exact cause of my seizures: hippocampal sclerosis. I learnt that the damage to my temporal lobe was caused by the prolonged febrile convulsion that I had experienced when I was three months old and that my seizures, memory deficiencies and panic attacks were all caused by ictal and inter-ictal disturbances to my right hippocampus and the adjacent amygdala. Even the spiritual experiences were explained by secondary disturbances to the part of the temporal lobe that is known as the "God centre" of the brain. I also discovered that neuronal disruptions caused by hippocampal sclerosis are often so deep in the brain that they cannot be detected by EEG and that temporal lobe seizures were often intractable to anti-convulsant medication.

Since my right hippocampus and amygdala were surgically removed by temporal lobectomy over seven years ago, I have been 100% seizure-free. I was gradually taken off medication, over a period of a few months and have not taken an anti-convulsant since. My memory has improved dramatically; I have a driver's licence, am happily married and have a great job in financial services. Seven months ago, my husband and I relocated to Ireland and we have decided to settle here permanently because we are so happy.

A Mother's love
In the face of resistance from a few of my family members, my mother gave me her full support throughout the surgery. I realised then that whatever mistakes my parents may have made, while trying to handle my epilepsy, they made these decisions out of love and never intended to hurt me.
Today, I am a content, healthy and independent person because of their efforts to help and nurture me. My experience with epilepsy taught me to be patient with people who are different to me and it showed to me that the human brain can overpower anything, except the human spirit.

First Published Epilepsy News Issue 42 Summer 2008