My first tonic-clonic seizure happened when I was 19, a few weeks before going to university. I didn’t realise it at the time, I thought I had just fainted. I had been out for a run and woke up lying in the road confused and sore. A month or so I had another one and this time lots of people saw it happen. A couple of months later and another seizure in the bag I was diagnosed with epilepsy and I started on Lamotrigine.
Once I started the medication I went from having one tonic-clonic seizure a month to one a year. Just when I was thinking that things were controlled I’d have another one, it was very frustrating and my neurologist at the time was very unhelpful.
Eventually I pushed to see an epilepsy nurse and consequently was referred to the National Neurology and Neurosurgery Hospital in London where my care has been amazing. A long chat with my amazing new neurologist and a few tests later I had a far better diagnosis of temperal lobe epilepsy.
She felt I had been having focal seizures between tonic-clonic seizures for years and so the control I thought I had wasn’t the case. While that was depressing at first it made me hopeful that one day I would find seizure freedom.
Two children later and a change of medication to Keppra and I am finally 3 and a half years seizure free which is amazing and something I didn’t think would ever happen. It may not be forever but I am making the most of it at the moment.
I hope you find this blog useful in learning more about epilepsy as well as pregnancy and parenting with epilepsy. Please do get in touch as I know how lonely the epilepsy journey can be and I am here for anyone who I can help.