My Story

Add your own

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.

Most recent | Most read

As part of National Epilepsy Week, I wanted to open up about my journey with Epilepsy. It all started a few years back when I woke up and suffered from these 'jerk' like moments, which in August...

Surrey

I never knew the ‘bad feelings’ or the ‘daydreams’ I had from a child was epilepsy until I was diagnosed in 2020. I was diagnosed with Frontal Lobe Epilepsy. I was under investigation from late...

Leeds

I have never in all my life experience the feeling I have had since COVID hit,
Thinking about it my job was adjusted to fit the changing times,
These are my feelings even though I’m in...

West Midlands UK

I got diagnosed with epilepsy when I was eight after having two clonic tonic seizures. When I first got diagnosed I didn’t understand what epilepsy was all I knew is that it was bad. I was started...

Northamptonshire, England

Eva-Lilly is 9 and had two focal seizures in August last year. One affected her mouth and the other affected one side of her face. She had an MRI but there were no immediate concerns. There were...

Hi, my name is Angela, I am now 22 years old and this is my story....

I first started having seizures as a baby for two years. I had really bad febrile convulsions. I did all the exams but...

Manchester

Hope is the thing with feathers that perches on the soul. - Emily Dickenson

Five years ago, a doctor told me that if I did not get my seizures under control, there was a good chance I would...

Portland, Oregon

My name is JJ I am 26 and an epileptic rugby player.

I was diagnosed with JME epilepsy at the age of 21. My journey started when in London Victoria Station, I was having dinner in the...

London

Hello!

I have lived in a world without Epilepsy and at the age of 20, my whole life changed....

Up until the age of 19 I thought I was a migraine sufferer, but the optician noticed a...

Grimsby

I was diagnosed with epilepsy when I was 7 years old however my experience with seizures date back to before I was even one year of age. The seizures of the time were discovered to be a symptom of...

Shropshire

“I wish my family and loved ones didn’t have to see me have seizures as it’s very scary for them. I’m then having to ask them what happened because I can’t remember. It’s not a nice...

“I used to be scared of the seizures, but my worst fear now is the side effects of the meds and condition.”

“I wish people could see what else happens to me outside of the 20 seconds to 2...

My one wish is for people to realise that even with epilepsy you still have the potential to be a "healthy" human and with the right mindset you can achieve anything. I feel having...

I wanted to write about my experiences of epilepsy and pregnancy to challenge the misconception that women with epilepsy should not or cannot have healthy children or look after them. ...

I had my first seizure at the age of 9 months and was diagnosed at 18 months of age.

It affected my life in every aspect from very early on. I was so poorly that I couldn't go to nursery or...

“Theo started to have what we could only describe at the time as ‘funny turns’. He would often describe a tingling sensation in his teeth, before losing control of his speech and muscle movements...

I was diagnosed with temporary lobe epilepsy 2 years ago and thank goodness I haven't had a seizure since I left hospital.

I am on vimpat medication twice daily, 100mg morning and night....

Ireland

To begin, I must go back to my early teenage years, when I started having unexplained accidents that I couldn’t remember the cause of.

At the time I had my ears checked for any inner ear...

Cullompton

"About a year ago my life changed completely. Unfortunately, after 13 years seizure free, I had to deal with the return of my epilepsy. For whatever reason. Easter time last year, I’d had a few...

"About a year ago my life changed completely. Unfortunately, after 13 years seizure free, I had to deal with the return of my epilepsy. For whatever reason. Easter time last year, I’d had a few...

I was diagnosed will epilspsy at the age of 14, almost 11 years ago now how time flights.

I wasn’t born with epilspsy and had never had a seizure before but I had a accident and I lost all...

Dorset

Pages