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When the seizures won't stop

Created:

28 March 2014

Claire has had epilepsy all her life and describes herself as 'a complicated case'. Every new drug she tries works for a few months before her seizures are back again. Here she describes her hopes of gaining better control at Epilepsy Society's Sir William Gowers Centre in Buckinghamshire.

I live life to the fullest. I love going to concerts, going to the theatre, grabbing coffee at Costa's, spending time with friends and family, shopping, watching films and going on holiday abroad.

But my epilepsy tends to go up and down like a yoyo and I have been in and out of hospital, often suffering with depression as well as seizures.

After a very bad patch in my life I started to have panic attacks and really bad seizures. This was due to going through a marriage break-up. The stress was just too much for me to handle. This was the first time my specialist mentioned the Sir William Gowers Centre and asked how I'd feel about going there. I was in such a mess with my life and my epilepsy that my family thought it was a good idea and I was just glad of any help.

Sir William Gowers Centre

When I first came to Gowers in 2007 I was very nervous. There were lots of strangers, people saying hello, comings and going - omg! I didn't really know what it was all about. When someone had a seizure, I didn't know what to do? You panic at first, but then you see another, and another, and not one of them is the same.

The staff are great. They're kind and friendly and have time for you. They helped me cope with my panic attacks,  and showed me how to slow them down. One key worker in particular helped me manage and eventually get rid of my panic attacks and for that I was truly grateful. They have also helped me to stabilise my epilepsy.

After this first stay in Gowers I came out a much calmer, happier person than I went in. Since then I have had meds changed and visited Gowers another three times. Lucky them. I now know that I am a complicated case and Gowers has become a second home to me and helped me with my medication.

My problem is that I'm put on one drug, then six months later it will stop doing its job.  It's so bugging. I have just been in Gowers for my fourth time, again for med changes. I tried one drug that just gave me more seizures, but the staff were really good again! Caring, kind, helpful, they just can't do enough for you. I've now started another drug which does seem to be working (fingers crossed), although we will see what happens.

Since going into Gowers, I have learned so much, including how to breathe through my seizures, keep calm and relax - just things I would never really have thought of doing myself before.

Support from family

Apart from Gowers my first and biggest supporters are my family. My parents, brother and sisters couldn't do more if they tried. They pick me up when I'm down so low.  I also have nieces and a nephew who have accepted me for who I am.

It was the proudest feeling ever when I held my niece Lydi in hospital just after she was born. I was worried I would drop her or have a seizure, but my sister and mum sat either side of me just in case.

I am god mother to both Lydi and my youngest niece Millie. It is a wonderful, magical feeling.

I now live independently in the London area. This means I've got my own life and a bit of freedom, and my mum and dad aren't as tense as they can be when I'm around. I do miss home but I have a great time with my friends.

I still love going for my Costa coffee cappuccinos, walking round the shops and buying clothes, having fun with my friends - meals in and out, watching DVDs. Mamma Mia is my number one on the list, I've even had it on in Gowers and sang along to all the songs!

Sir William Gowers Centre