Members Stories

Epilepsy Berkshire Members Stories

My Personal Epilepsy Journey – by Pauline Boyle

Hello, my name is Pauline. I am retired and was diagnosed with epilepsy at the age of 68 years. It took approximately six months before my diagnosis was confirmed, as my symptoms were different from many other forms of epilepsy. With the help of regular medication, I am now symptom-free and lead a normal busy life.

I can drive, play sports, attend exercise classes and help run our support group. Joining this was very beneficial to me, as I could meet other people living with epilepsy and this has enabled me to share my story and they, theirs.

Many of us have different forms of epilepsy, so learning and understanding this, was quite an eyeopener. Our support group have monthly sessions and together we organise other activities, such as: picnics, restaurant meals, films at cinemas bowling and pub quizzes.

Peter’s Story

My name is Peter Clunie I am 65 and at the age of 61 I woke up in hospital not knowing how I got there. I was very confused ached all over as if I had run a marathon and I was very frightened. My wife told me that she had woken up with me having a seizure and thrashing all over the bed (I later discovered it was called a generalised tonic-colonic seizure).

I was told I could not drive, which meant my work suffered. After more seizure and absences, I was diagnosed as having epilepsy. I was put on a regime of drugs which initially did not work and the side effects were bad. My nurse changed my drugs and since then I have been stable and able to drive again. There is no obvious reason why I started having seizures.

Although I have been stable for over 2 years I have been left with Epileptic Amnesia (I don’t remember many things that have happened in my past). There are also short-term memory issues and I have had bouts of depression.

However, I have learnt to live with Epilepsy and my friends and family have been very supportive throughout.

The group meetings are a great source of support. Understanding the issues others living with Epilepsy have, made me realise that I was not alone and in fact extremely lucky that my seizures are under control. Giving each other support with understanding thoughtfulness and of course humour has helped me through some dark times.

At our group there is always light.

Lee’s Story and Quest for Knowledge

My name is Lee I’m 35, I was aged 15 and in my last year of high school when I was diagnosed with Epilepsy.

When I was first told I had Epilepsy I didn’t have a clue what the word Epilepsy meant. My friends and family knew almost nothing, my GP didn’t know much and the waiting list to see consultant, was just too big. I felt I needed to find out as much as I could about Epilepsy so I could try to understand what was happening to me and why. I knew at this point obtaining information from a consultant was not going to be quick enough for me. My alternative option was to turn to books and look on the internet, in doing so I started to find out more about Epilepsy and my condition. After seeing a consultant and trying various drugs however, I was still having seizures.

When I was 24, I was offered Vagus Nerve Stimulation Therapy. Eventually I went ahead with the two incisions required to have the VNS Therapy pulse generator and lead implanted, due to brain surgery not being an option and medication not having much of an affect. I am not sure the VNS has helped much either. It does not work for everyone.

I know I have lost a lot due to my Epilepsy but at the same time I do feel as I have had some small benefits to my life as well.

Saying that I have benefited from Epilepsy may make you think I’m going slightly crazy and that I have just contradicted myself, but when you really think about life there are almost always good sides and bad sides to every life event.

My Disability has helped me to see the importance of life. I know my Epilepsy needs constant attention and it’s because of this that I have learnt to look at my life from a much more positive frame of mind and do much more for myself and others whenever possible.      

Epilepsy Berkshire helps me by ensuring I never feel alone.