Touching Lives - March 2004
My story: epilepsy
“I used to get really bad grand mal seizures — really big and bad — all the time and at any time without warning. I’d lose count of the number I’d have in a month. I was all over the place, and it continued like that for best part of five years.
In the first year I didn’t even go to my GP. I’d never heard of epilepsy, so I just put it down to me passing out. My family were the ones who made me get help. I had a seizure in front of them one day — after that experience they made me go to the doctor immediately! My GP sent me for tests at St Thomas’ Hospital in London. I waited three months for the results, and then was finally told that I had epilepsy. I was given some leaflets about the condition and a prescription — then they left me to get on with it!”
Out of control
But the medication Denice was given made her worse, and her seizures got further out of control. The side effects of the medication did little to improve Denice’s quality of life either; the tablets made her drowsy at all times of the day. Her GP lowered her dosage, but she was still fitting regularly.
“This went on for ten or 12 years. I tried all types of medication but nothing helped.”
She’s in King’s College Hospital today to have the SPES treatment, and is waiting on ward until she has a seizure which can be measured.
“They’re trying to find out where my epilepsy is coming from. Apparently I’m having them in my sleep which I never realised — they picked it up on the monitors here. The seizures are very frightening. I can feel them coming, and then I visibly start to shake. My family have been brilliant through all this.
“I really hope that my life will get back on track soon. Previously I was very against having the operation to remove the affected part of my brain, but ^if my epilepsy is pinpointed during this stay I will have the operation — it can just make your life so much better^.
The doctors here at King’s are absolutely brilliant — I’m delighted that they’ve been recognised as such by Action Medical Research.”