My Story
Everyone’s epilepsy story is unique, and sharing your story helps others know they are not alone.
These are inspiring stories; of being diagnosed, over-coming challenges, fundraising and much, much more. Please share your story too.
I would like to share my recent discovery. Ever since my husband started working from home due to the Coronavirus lockdown my seizures have reduced significantly. Having him with me throughout the...  Brentwood | I was diagnosed at 18 and the cause was unknown until I started retracing my steps. I realised I began having seizures after I started having problems in my relationship. My neurologist said that...  Bury St. Edmunds | I was diagnosed with epilepsy from the age of 7 until I reached 35 of age my condition has become worse I would have absent seizures and falls in public and at home and This effected my work and...  London |
I had my first epileptic seizure looking in the mirror. It was a Sunday night and I had worked 8 hours at my part time job, and being exauhsted from partying the night before- taken a few... Australia | My name is Alexandra, I am nearly 30 years of age and I live near Portsmouth. At the age of 4 and half I was with my mum, dad and brother Angus staying with my grandparents in Scotland. One...  Portsmouth, Hampshire, England | I was born with epilepsy in 1957 and I was reciving liquid phinobarbitone as a baby till I was the age to swallow pills. I was taking really bad seizures which were grand mal seizures. I... Tullibody, Alloa, Scotland |
Susan was 16 when she was diagnosed with epilepsy after a seizure at school. She was prescribed valproate, which proved effective in controlling her seizures. But she was never told at any point...  Belfast | Living new life with Epilepsy. When I last saw my Epilepsy specialist many months ago at a hospital, she suggested I change one of the medications I've been taking for many years to a more... Tunbridge Wells, Kent | I have a very unpredictable kind of epilepsy, no aura and clonic tonic seizures every couple of months without meds. Thankfully it’s been under control for 8 years now. I am on a lot of meds...  London |
My son was born August 2000. At the time I was on 3500mg Sodium Valporate and 1000mg Pregabalin. He was born with Secondary Spina-Bifida, Hydrocephalus, 2 cysts on the brain, vision...  Manchester | Hi I’m Joe. I was first diagnosed with refractory multifocal epilepsy at the age of 15. I really struggled to accept my diagnosis the first few years. I felt like I had been robbed of being...  Hertfordshire | Seizure Talk - Hi all, there is a link below to my YouTube channel to talk about my journey to get to 1-year seizure free! More than that, to talk about epilepsy and living it with it in everyday... Kent |
Hey I’m Katie I have suffered with epilepsy since I was 8 years old, I was diagnosed with Nocturnal epilepsy. I had seizures while sleeping which were grandmal seizures.  Warrington Cheshire | For #VolunteerWeek2020, Sara has shared her story of volunteering with Epilepsy Action.  | Hi, my name is Lee, living in England with my own property at Great Barr of Birmingham, now being 49 there are many things seen but plenty more of which wanting for seeing in large hopes having so...  Birmingham |
This is Robyn, she is 4 1/2 yrs old. She is still under investigation for epilepsy after almost 2yrs of having the episodes. It is a bit difficult with her as the specialists strongly...  Llandovery, Wales | Hi my name is Holly McCallum, this is my story. I was first diagnosed back in 2015 with epliepsy, and to be honest I did not how to feel or how I was going to get though it all. The... Birmingham | My name is Barbara and I am Italian. I am on the autistic spectrum, and due to violent traumas during my childhood, I am epileptic. The episodes started in my teenage years and up to...  Italy |
My name is Molly, I was diagnosed with right temporal lobe Epilepsy when I was 14. After having a seizure in a swimming pool and nearly drowning I became really scared of having Epilepsy and how... South Wales | My name is Cristyn, I first started with Epilepsy when I was 3 years old until I was 7. I had tonic clonic seizures but as I was so young I can’t remember it ever affecting me. However, at...  North Wales | Hi my names Sharon I’ve had epilepsy since the age of 18 months old. As a child I didn’t have it easy as I was bullied at school, it continued for ages and I struggled with school as I missed out... Southport |