I had my first seizure in 2017, a tonic clonic whilst at my hairdressers.
I had to stay in hospital due to the severity of the seizure, we were hoping this was a once off, sadly not and two weeks later I took another.
I had just returned to work as a nurse from maternity leave, I had a 3 year old and 9 month old at the time and the impact of this emotionally and the safety concerns were phenomenal. I had to take sick leave until we could get my seizures under control.
After the 3rd seizure, my neurologist diagnosed me with epilepsy although my mri was clear, and commenced me on keppra which did not control the seizures.
I developed severe side effects short term memory loss, brain fog which was probably a combination of the tonic clonics and the keppra and a stutter with my speech.
I continued to have seizures mostly in mornings, waking up I was found in the bathroom most of the time or falling down the stairs and for a period of nine months. I developed oral thrush and mouth sores from biting my tongue and grinding my teeth and deep muscle ache and tiredness from muscle contractions.
I would say most people with tonic clonics would agree they feel they've run a marathon. Seizures MAKE you scared you convulse, you become unresponsive, confused, fearful, anxious and extremely fatigued.
Thankfully I was switched to zonegran and weaned off keppra. I had one further tonic clonic seizure and I have now been seizure free for over one year. During my active time of seizures it really brought to the forefront the lack of education and support there is in the community of epilepsy.
The safety concerns for my children were my biggest worry. I felt I couldn't hold my baby unless there was someone with me incase I took a seizure and I dropped him it broke my heart, I couldn't be alone at home or with the kids and I couldn't drive. My independence was gone as a 27 year old young mother.
I am so thankful for family support at the time, I am back driving and slowly gaining my confidence back, however its always there in the back of my mind and I don't think I'll ever lose that thought. My neurologist has been very supportive and is very active in promoting health and wellbeing which had been a great help. This is my story.