What has not changed is that many people with epilepsy still face social isolation and stigma. This is why as a former teacher I do all I can to educate and raise public awareness of the condition I’ve lived with for most of my life, although it wasn’t formally diagnosed until I was almost 30.
According to the World Health Organisation, epilepsy is the world’s most common serious brain disorder. It is more than three times as common as multiple sclerosis, Parkinson’s disease and cerebral palsy.
Seizures and epilepsy are not necessarily the same. Seizures involve a disruption of the normal electrochemical activity of the brain. While about ten per cent of the population may have a seizure during their lifetime, epilepsy is only diagnosed when a person has recurring epileptic seizures. Australian Bureau of Statistics estimates over 250,000 Australians are living with epilepsy.
Seizures can be divided into three major groups: focal, where seizure activity starts in one area of the brain and may spread to other regions of the brain (there are three presentations); generalised seizures, which result from abnormal activity in both hemispheres of the brain simultaneously and where consciousness is lost at the onset of the seizure (there are many types of generalised seizures); and unknown, where the origin of the seizures can’t be determined.
I’m part of the about 60 per cent of people with epilepsy who have focal seizures (formerly known as partial seizures). These seizures can often be subtle or unusual. My childhood comments to my mother that I could taste blood were not recognised as epilepsy, although these episodes probably were focal seizures with awareness retained (formerly simple partial seizures). The focus, where my seizures begin, is my right temporal lobe so it is my senses that are affected.
Unlike many who grow out of epilepsy at puberty, my seizures changed, so at high school my best friend became accustomed to explaining to teachers why I was slumped unresponsively on the floor. Again no connection was made and the assumption was that “Lyn just has a tendency to faint”. Possibly these were generalised atonic seizures as I would usually feel a bit odd, so lean against a wall that I would slide down.
A couple of years later on a road trip with friends from uni, I lost control of the car I was driving, rolling it four times. This time epilepsy came to my aid as I lost consciousness when I realised I couldn’t prevent the accident. When the roof of the car crushed down I was slumped in the seat and the damage to my head was minimised.
Back in the mid-1980s the influence of hormones for women with epilepsy wasn’t well recognised, and the links suggested to me by an alternative health practitioner were dismissed by neurologists I saw at the time. However, the onset of my focal dyscognitive seizures with awareness altered (formerly complex partial seizures) coincided with when I discontinued the contraceptive pill. This was when my epilepsy was first diagnosed.
I have been taking various antiepileptic medications (AEDs) since then, but unfortunately I’m not part of the approximately 70 per cent of people who gain full seizure control with treatment.
Hormonal changes were also involved when a couple of days after the birth of my daughter, but fortunately before I was discharged from hospital, I had my first focal seizure that evolved to a bilateral convulsive seizure (formerly secondarily generalised tonic-clonic seizure).
I also had a prolonged focal dyscognitive seizure during the birth of my son, but fortunately it didn’t become convulsive. My last memory is of warning my husband Geoff that I was having a “turn”, not a contraction. The midwife at the birth centre at RPA who was caring for me had nursing experience at the epilepsy unit of another major teaching hospital. She reassured Geoff that no intervention was needed as long as I co-operated by following instructions and she was able to monitor that the baby’s heart rate continued to be normal. A couple of hours later I regained awareness, although at that stage no sense of pain, so I had the joy of giving birth naturally with no pain to a very healthy 4.1kg baby.
Now, the workings of hormones in the brain are better understood. It is well accepted that oestrogen is an “excitatory” hormone, which means that it makes brain cells give off more of an electrical discharge, so for some women seizures spread when oestrogen levels are high. Progesterone, on the other hand, is an “inhibitory” hormone, which means that it calms those cells down.
My journey with epilepsy has been more complicated than many, but neuroscience is making progress in its understanding, diagnosis and treatment.
