When I was 12 years old, it was school holidays and so we had a few late nights and then a few friends came and stayed over for a sleep over. My little sister climbed into my sleeping bag in the early hours of the morning when we were stirring. I started chatting but didn’t feel as if I was completely with it. My brain was fuzzy and kept skipping bits of the conversation. There were blanks and I wasn’t sure who was talking. I would start talking, then tune out and not know what was going on. It was all very confusing then suddenly Mum was in the room, yelling out the window for help and the next thing I knew, paramedics were with me, and then I was in an ambulance with a splitting headache.
Soon afterwards, I was diagnosed as being epileptic and an onslaught of blood tests, drugs and more blood tests ensued while doctors tried to find the correct dose and stabilise me. Fortunately I only had a minor form of tonic clonic seizures, which tended to come on first thing in the morning, as I was still getting ready for school and I realised that a lack of sleep, flashing lights and stress were my biggest triggers (soon discovered alcohol irritated my brain as well).
I was generally very well controlled and didn’t have many seizures at all, despite my meds being changed quite often but I will always remember the awful feeling when I came around after a seizure and seeing the disappointment in my family’s faces. As far as I was concerned, I was unconscious, so didn’t realise what was going on, but the confusion and lack of memory afterwards did upset me – their sadness and disappointment was something I could never shake though and this contributed to my decision not to have children. I don’t know if I would have the strength to see my children going through what I was putting my family through.
When I was studying homeopathy, my epilepsy suddenly went out of control and I had up to 100 absence seizures a day so went onto the ketogenic diet as my meds were no longer controlling me. The support group in the UK (Matthews Friends) and my fabulous dietician helped me through this very challenging diet which I followed to the “T” for about 2 years and still watch my sugars as i feel my brain works better without sugar.
After this, I was clear for about 5 years, then we went sailing and I knew this was a trigger for me, so I doubled my meds, got fabulous sunglasses and survived the 5 days away …. so I thought I was safe … and went back down to the normal dose – only to have about 4 massive seizures and have such severe memory loss that I still didn’t even know how to use my mobile phone 3 days later! As I was living in the UK at this stage, I lost my drivers license for a year, which forced me to think laterally – I started cycling …. So every cloud has a silver lining and everybody knows that I am the designated driver because I don’t drink. My life is healthier because of it and I appreciate what I have learnt along my path and the support I have received.