Hi my name is Olivia Lewis also known as Livvy, I was officially diagnosed with juvenile absence seizures on the 4th October 2010 which was just after my 11th birthday.
My seizures have never been completely controlled, before my diagnosis I was having up to 40 seizures a day but by the time I was around 12 years old I had up to 5 seizures a day. When I was 14/15, I started to have complications with my seizure management and, in May 2018 I had my first nocturnal tonic clonic - for me it’s been a very bumpy road since.
I’ve only had 6 nocturnal tonic clonics since my first one, but I could be having more during the night, we just don’t know, we only know when I’ve had an accident. In my case as well as many others, having nocturnal seizures is the scariest part of having epilepsy. I have my own room so I go to sleep never knowing if I’m going to wake up, because I feel this way at night I have to make sure I remind my dad that I love him and thank him for everything.
The advice I would give to others who have nocturnal seizures is; try not to get to stressed, make sure you get enough sleep at night, never push yourself and, try to make your life as smooth as possible.
