"Thank you for giving Caroll back to us" | Action Medical Research

Touching Lives - February 2007

"Thank you for giving Caroll back to us"

Known as Caroll to her friends and family, Caroline experienced her first epileptic seizure when she was just 14 years of age. At first the seizures were put down to puberty, and despite repeated fits and visits to doctors, her condition went undiagnosed.

Caroline recalls, “Epilepsy had a major effect on my life from the start. All the things that other teenagers could do were full of risks for me — drinking alcohol, going to parties and discos with flashing lights. I passed my driving test before epilepsy was diagnosed, but had to give that up soon after.”

Caroline met her husband Andy while at school, and in 1979, when she was 20, they married. Soon after, Caroline found she was expecting their daughter, Kelly. However, a difficult pregnancy led to bad postnatal depression, and Caroline’s seizures began to worsen. Doctors initially attributed this to the depression, but three years later, during a stay in a psychiatric hospital, one of Caroline’s seizures was witnessed by a nurse and finally, eleven years after symptoms began, Caroline was diagnosed with epilepsy.

“Even after all that time I was surprised by the diagnosis. If I’d had the tests earlier, the truth of my condition would have been discovered a lot sooner. Instead, it was put down to my menstrual cycle and pregnancy.”

Caroline was prescribed a cocktail of drugs to try and bring her seizures under control. “The diagnosis started a long list of medication, anticonvulsants, antidepressants. Every time a side effect developed another pill was given. But no medication gave complete control of my seizures, just caused more problems.”

Getting on with life

While grappling with weekly seizures and the side effects of these various medications, Caroline continued to bring up her daughter, run the family home and even hold down a job as a banquet organiser. It was a struggle at times, but she always tried not to let epilepsy stop her from doing what she wanted.

After ten years on the epilepsy medication, Caroline was also diagnosed with Type 1 diabetes. “Every time I had low blood sugar, it triggered a seizure. The two together became harder to control and doctors advised me to keep my blood sugars higher to prevent seizures, but this again has had side effects and given me problems with my feet and eyes.”

Despite her best efforts to get on with life, the heavy medication and continual threat from seizures eventually forced Caroline to give up work.

“Emotionally, I became very drained. It was difficult to have a social life and after giving up my job I became very isolated. I suffered low moods that made me irritable and sometimes even aggressive, as well as chronic fatigue, and a large weight gain because of all the medication.

“What people don’t understand is that epilepsy is not just a condition, it’s a way of life.You have to live within the limitations that it gives you.You have to think twice before doing everyday things like cooking, ironing and crossing the road to avoid accidents, things other people do without thinking.”

Help on the way

For a number of years, Action Medical Research had been funding the work of John Duncan, Professor of Neurology at University College London. He was leading a team in the development of new MRI scanning techniques to pinpoint the very area of the brain where a patient’s epileptic seizures are generated. With this detailed information, it was hoped that surgeons would be able to operate on that part of the brain, giving people like Caroline, whose epilepsy did not respond to medication, the prospect of a seizure-free future.

Feeling at an all time low, Caroline was referred to the National Hospital for Neurology and Neurosurgery, where she became a patient of Professor Duncan. He assessed Caroline’s suitability for surgery using the new scanning techniques and confirmed that the procedure could go ahead. “I was nervous about the prospect of surgery, but I was prepared to try anything that might help my condition. It was not a brave decision — I was desperate.This was my chance to improve things. How could I not try something that might mean I’d be seizure free?”

Caroline underwent surgery in June 2004 to remove the part of her brain that was triggering her seizures. She spent less than a week in hospital before returning home to recuperate.

“The hospital staff were very caring and professional and really helped me through. The hardest part was the headaches, but this was soon put right with painkillers. I’d agreed to have extra tests after my operation so doctors could compare results before and after surgery, to help patients in the future. This was another positive aspect to having the surgery.

“I’d say it took me about a year to get used to the reduced levels of medication, and the physical and psychological changes from the operation, and being free of epilepsy. Many of these changes were unexpected and I did worry whether what was happening should be happening.”

“Personality transplant”

That was almost three years ago, and since then Caroline has been seizure free. “I’ve changed in so many ways it’s difficult to list them all. I’m happier, I do more things socially and I’ve taken up new hobbies. Some friends say it’s like I’ve had a personality transplant.”

Perhaps the people who can best describe the difference the surgery has made to Caroline are her friends and family. Her sister Michelle says, “I watched Caroll deteriorate over many years, suffering the terrible side effects of the seizures. Now we see her happy, laughing and able to enjoy life free from fear and depression.The operation has given her back a quality of life that most people take for granted.”

Her friend since childhood, Sonya Price recalls, “Before she became poorly Caroll was healthy, outgoing and very sociable. Over time she changed, becoming quiet and withdrawn. Now Caroll’s making up for lost time: family parties, knitting, sewing, painting, voluntary work. I have to phone to make sure she is at home before visiting! But I’m not complaining.Thank you to Professor Duncan and colleagues for giving Caroll back to us.”

Caroline concludes, “My treatment means that I now enjoy my life.When I did things before it was like clockwork, no enjoyment, just keeping occupied. My life has totally changed. By telling my story here, I feel I’m giving something back to the people who have helped me get my life back — the supporters of Action Medical Research.” TL

Giving hope to more patients

Epilepsy is the most common serious brain disease.Action Medical Research is continuing to support Professor Duncan, as he and his team work to refine the scanning techniques to identify the cause of epilepsy in more patients. “Our research work to develop new and more sensitive brain scans is continuing apace, with the aim that we will be able to identify all the abnormalities in the brain that may cause seizures, and so direct each individual to the best treatment,” he explains.Touching Lives will, of course, keep you up-to-date on their progress.

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