Epilepsy is something that I developed as a young child. It was rather mild initially as even my parents didn’t notice my seizures for years. It turns out that I’d been having absence seizures (relatively mild things where I “zoned out” for a few seconds). Aged 10 I was diagnosed with epilepsy and put straight onto meds.
My medication made me very tired. I couldn’t ever get enough sleep. Family thought that I was being lazy. I felt so alone because no one understood, no one seemed interested and no one else thought my epilepsy was a big deal. I felt ashamed. Depression took hold from an early age. I became withdrawn and isolated.
The seizures got progressively worse in my twenties and I started to have tonic-clonic seizures where I lost consciousness, my limbs became rigid and I was shaking around on the floor (the ones that many think of as a seizure). My brain was really “going for it”. I smashed my left clavicle (2 operations required). I ended up on a railway line. I stopped breathing. I was getting very upset and annoyed with it all.
I managed to “cope” with high pressured finance roles in London and Melbourne. I tried not to let my seizures affect me. However, there is only so stubborn one can be. They were much more frequent, sometimes 3 a month, sometimes 1 every couple of months. Either way, my life expectancy was significantly reduced and the dramatic increase in the frequency and severity of seizures was out of my control.
I managed to find myself a fantastic Neurologist who specialised in epilepsy at the National Hospital for Neurology and Neurosurgery in London. I was interested in potential surgery so put myself forward for video telemetry and I was very lucky – by inducing a seizure, the neurologist was able to identify the specific part of my brain from which the seizures originated. Then came the operation! I had a temporal lobe resection, which in English means that they removed the damaged part of my brain. It was traumatic and made my depression even worse for a time. But now I have approx. 1 seizure per year. Wow. It has been amazing.
I now work with Epilepsy Action, the largest Epilepsy charity in the UK, to raise awareness, support research and reduce discrimination. Thank you to them for my Media Volunteer of the Year Award!
*Some cases of epilepsy have a clear cause. It is suspected that mine may have been due to an hour-long febrile seizure (seizure caused by a fever) which I had as a baby.
We are so proud of our Ambassador Torie Robinson for speaking up and informing us about epilepsy. Her clarity brings us an understanding we would never have without her strong and radiant voice. Many of us are not aware that epilepsy has many forms and many causes and the impact this illness has on the lives of our friends, family and even ourselves.
Torie’s article got me thinking: can domestic abuse and violence cause epilepsy? So, being ever so scientific, I took to the internet and did some research. This was not at all scientific nor exhaustive.
There does not seem to be conclusive evidence in British Journals. However, there were two studies that peeked my curiosity.
A study published in the scientific journal Epilepsia (Sept 2016), demonstrates that people with epilepsy were seven times more likely to report experiencing discrimination due to health problems compared to people without epilepsy. This figure was considerably higher than for people with diabetes, asthma and migraines; when compared with people without each of these conditions respectively.
According to the data, people with epilepsy were more likely to have suffered domestic violence and sexual abuse than the “general population”; however, these associations were similar in the people with other chronic conditions (diabetes, asthma and migraines)
The links between epilepsy and domestic violence are furthered discussed in “When Love Goes Wrong – Intimacy and Epilepsy” (4 April 2015).
“In the most recent attack, her husband beat her with a board, leaving her with permanent brain damage and a life-long disability.
As a result of her injury, she now has frequent seizures, difficulty with balance, and is terrified to leave her home for fear of having a seizure or falling.
Domestic violence does not just leave deep psychological scars on its victims — it also leaves physical ones — often in the form of traumatic brain injury (TBI).
Despite this, we fail to recognise the effects a brain injury may have on a victim of domestic violence.
Short term memory loss, mood swings, seizures; these are just a few examples of the legacy that TBI leaves behind.
Both brain injury and domestic violence are recognised public health problems in the United States. The estimated annual costs for TBI are $48.3 billion and $5-10billion (USD) for domestic violence. Up to 35% of women’s visits to A&E are related to injury from ongoing abuse.
Typically, injuries resulting from domestic violence include fractures, eye and ear injuries, lacerations and brain injuries. Furthermore, brain injuries occur in up to 36% of domestic abuse related injuries.
Sexual assault and domestic violence staff identify 35% of female victims as potentially brain injured.
These findings suggest that 18% of domestic violence victims who come to A&E for their injuries have residual symptoms as a result of brain injury and as many as 67% suffer with one or more elements of Post Concussive Syndrome.”
What Torie has done is opened a pathway for all of us to have a discussion regarding the impacts of epilepsy. Her comments also help us think about epilepsy in the context of abuse and violence; her epilepsy was not a result of abuse. However, there is a growing need to see the long-term health conditions resulting from abuse and violence.
If you are affected by any of these issues, please contact:
Freephone Helpline 0808 2000 247
If you are affected by epilepsy, please contact:
Freephone Helpline for epilepsy advice and information: 0808 800 5050