Monday 25th Sep
My name is Natalie.
I am 33 years old.
I was 8 when I had my first seizure. Officially diagnosed aged ten with focal aware dystonic seizures.
My very first seizure I remember clearly thinking I was getting murdered. Everything was dark.
Mum was told that I had attention seeking disorder and to ignore me. Eventually mum had enough of watching me hurt myself. There was no way I could do this for attention. She took me to the doctor who ordered an MRI. Lo and behold, I had a growth on my little brain.
Living in Ayr at the time I flew on the flying doctors plane eventually getting to The Royal Children’s Hospital in Brisbane where it was planned that I have surgery to determine if the growth was cancerous or benign. Thank goodness it was benign. At the age of ten, I wasn’t really able to understand what was happening. All I wanted was peanut butter toast after fasting for the surgery, which I still love to this day!
After the surgery I was put on medication. I learnt to take adult sized tablets at this young age.
My seizures were fairly well controlled until I was twelve when I had another bump in the road. I once again had another surgery.
I was being robbed of a normal childhood. Again, the seizures were fairly well under control.
I had the occasional seizure up until the age of fifteen. Things really went downhill. Over 30 seizures per day. It was like riding a roller coaster. Up, down, round and round. Poked and prodded. Many scans and tests. This was the reality of my life.
I spent a great deal of time in the Royal Children’s hospital Brisbane. Many tests were done before they decided on doing a procedure that had never been performed in Australia. I waited until the equipment arrived in Australia and the doctors were trained on how to use the equipment and perform the surgery. Waiting many months for this all the while having 30 plus seizures per day. Eventually everything was ready to go ahead. They did surgery to place electrodes on my brain that were connected to an eeg type of computer. This was in attempts to collect as much data as possible to remove the growth completely without causing paralysis as the abnormality is on my motor function area. They monitored my brain waves for around ten days. Once they were satisfied they had enough to use they took me into surgery for an awake craniotomy. I was under a light anaesthetic just enough so I was able to talk to them and answer if I could move my foot, feel my arm, leg etc. the most painful part of that were the clamps stopping my head from moving.
Once recovered I was good, barley any seizures, less than ever before. I did my usual rehabilitation and became a normal teenager. It was too good to be true!
For many years I lived a normal life. Thinking one day I would have a baby, get my license, become a paediatric nurse.
I was twenty when once again, it was time to jump back on the roller coaster. Again 30 plus per day. I was filled with poison. So many toxic combinations of tablets in attempts to stop my seizures. I could barely see and was throwing up due to far too much chemicals in my body. Eventually they realised no combination of medication were going to control my epilepsy.
I was sent to Melbourne this time. I had many advanced tests and scans before having an unsuccessful surgery. I was put into an induced coma and once woken I had psychosis. This went on for many months. I was brought back to Townsville where I stayed in the rehab ward. Still having mild psychosis. I did intense rehabilitation until I was ready to move into the Acquired Brain Injury Unit. I stayed there for what I believe to be too long. I recovered best at home.
I continued to have seizures however considerably less.
I lived life as best as I could.
Since then, I have had Vagal nerve stimulation surgery. It took over a year to work properly but now my seizures are happening very rarely. I am able to actually live! I still have the occasional seizure so it is not a cure but an add on treatment which for me is incredible. I can’t work, drive and have to adapt my life slightly but every single day I wake and even having just two or three seizures is an absolute blessing.
After all these years It’s my time to live, not just survive!