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My Story

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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.

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Looking back, despite our research, we were quite naive when planning to have our first child. No one was overly concerned that I was taking sodium valproate. At 20 weeks, I had the normal scan -...

In 2010 I had brain surgery. This was actually ‘foramen magnum decompression surgery’ for a chiari 1 malformation (a bit of a mouthful).

A short while after the surgery I was diagnosed with...

Planning

When I realised things were getting serious between me and my now husband, I went for preconception counselling. I had been on Epilim (sodium valproate) pretty...

Planning

When we went for preconception counselling (in 2004), I was still at the stage of having about 40-50 petit mal seizures a month. I was on a low dose of lamotrigine...

The moment I knew I was pregnant

Surely this can’t be right!! What were the instructions again? Does that blue line really mean…?

I was expecting it to take at least...

Planning

I was aware that as and when I wanted to have a baby, I should discuss my plans with my GP and (if necessary) a neurologist. I had assumed at least a six month...

Planning

About a year before I became pregnant, I read something about the contraceptive pill interacting with my anti-epileptic drug (AED), lamotrigine. After yet another...

I was diagnosed with epilepsy when I was 14. I’m 25 now and after being on many different medications, it’s still not completely under control.

This past weekend marked 14 weeks without a...

Aislinn Carlile volunteers for Epilepsy Action Northern Ireland’s Ballynahinch coffee and chat group. Located in a rural area, the group gives people affected by epilepsy a much-needed opportunity...

The Norwich Epilepsy Action coffee and chat group has shown an outstanding commitment to the cause of epilepsy. They have been a vital source of support for people living with the condition, their...

Norwich

Maureen Taylor and David Streets have been key in the development of the Sheffield Branch of Epilepsy Action, which was initially set up in 1989. It is now one of the most consistently best...

Sheffield

I got diagnosed with epilepsy at the age of 15, I am now 32. It was difficult believing it at that age, so I got very embarrassed when telling friends and work colleagues etc. I thought I may be...

I am a young girl living with epilepsy, we are normal people, we are no different, our lives matter, we matter.

I was first diagnosed with JME aged 19yrs, although had had it for a while beforehand, mostly occurring in the morning - eating my cereal could be messy, and my brother and sister used to find it...

I'm Ojijo from Kenya. My attacks came back at the age of 18 after 9 good years of being stopped from using my first drugs "phenobabyton" - I was sent for an EEG and results showed that I had...

Kenya

I had my first fit at a netball match when I was 13. I remember seeing flashing brightly coloured prisms which grew stronger and stronger in my left eye before I collapsed into a tonic clonic...

Hi my name is Emma. Age 23 (24 in July) My first seizure was when I was baby. From then to age 13 no seizures at all, but when my grandad died it started coming back and have been having seizures...

Tell us more about the day you had a seizure in public while pregnant and what a difference someone helping made to you.

6th March 2015 remains the worst...

“One time I had a seizure on the platform at London Bridge. Luckily, a member of the public was able to catch me as I was about to fall in my tonic clinic seizure. They protected my head,...

West London

Angel was diagnosed with epilepsy when she was 14, nearly four years ago. She has had very mixed experiences in public.

“My seizures are usually once a month and can be triggered by stress...

Becky’s first seizure happened in February 2018 when her son found her on the bedroom floor. Medical tests came back inconclusive and she was told it was a one- off. Six months later, Becky was...

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