Touching Lives - September 2002
Action Medical Research changed my life!
When mother-of-three Janet Watkins suffered her first epileptic seizure in her sleep at the age of 32, it was a terrifying experience for both her and her husband Pete.
Fit and healthy, and a part-time staff nurse, Janet had never suffered anything like it before.
“It was frightening because it was literally like a bolt out of the blue and Pete didn’t know what to do”, says Janet, from Exeter in Devon. “It began by a sudden rigidity, followed by an uncontrollable shaking of the body.”
That first seizure, or fit as they are sometimes referred to, was just the beginning of a series of episodes she encountered in her sleep.
She also developed daytime episodes of severe nausea and confusion, when she was unsteady on her feet. She had slurred speech, and uncoordinated movement, and found it difficult to communicate with anyone who tried to help her.
Effects on daily life
Janet was diagnosed with epilepsy and prescribed medication. She was relieved she hadn’t been diagnosed with something more sinister, such as a brain tumour. But equally, she didn’t anticipate the effect that epilepsy would have on her daily life.
Now 45, she says: “Over the years, I stopped going out in the evenings and socialising, with the fear I was going to have an attack. I would be on edge all the time, especially with anybody who didn’t know me, and I didn’t want to tell them about the epilepsy unless I had to.
“Emotionally, I was a wreck. I cut myself off from many feelings, and sadly pushed my husband away.”
The epilepsy changed not only her family life, but her professional one too. Some restrictions were imposed on her nursing role — a job she loved in a local community hospital. In addition, the variety of anti-epileptic drugs she was prescribed didn’t stop the seizures.
“I was very unhappy with my life”, reflected Janet.
Things took a turn for the better when her neurologist took action. He referred her to Professor John Duncan at the National Society of Epilepsy’s specialist assessment centre in London.
Conventional magnetic resonance imaging (MRI) brain scans were unable to detect the focal point of her condition. But thanks to scans using new MRI techniques that Professor Duncan and his research team had developed — with Action Medical Research funding — the source of the problem was pinpointed in the right-hand side of her brain. Surgery was now an option.
Janet says: “It was a very frightening period for me and my family, and it took many months of personal torment to decide to have the operation done.”
Janet went through with the surgery at the National Hospital for Neurology and Neurosurgery in London in October 2001, and has never looked back. Since her operation, she has not suffered a single seizure, and an indescribable weight has been lifted.
“I now have an enormous amount of energy and feel like both a woman and a human being again! I have my life back. I just want to make the most of it now.”
So too does her dedicated husband Pete. The 63-year-old says, simply: “I’ve got my wife back — and life is wonderful again!”
Janet adds adamantly: “Having a condition like epilepsy can be extremely debilitating, so research in this area is essential. If there is a chance to make it better, find the cause and help, then research must continue.”
“Our work is giving real hope”
Janet Watkins owes her new lease of life to pioneering work championed by Professor John Duncan and his team.
Internationally renowned Professor Duncan told us: “Epilepsy is the most common serious disease of the brain, and carries the risk of death, physical injury and negative social, psychological and economic consequences for the sufferer and their family.
“Our work is giving real hope to the epilepsy sufferers whose condition can’t be controlled.”
Some 300,000 people in the UK have epilepsy. Although most sufferers successfully manage their condition through drugs, medication is ineffective for about 20 per cent of cases (known as refractory epilepsy).
For these patients surgery may be an option. This can only take place, however, if the area of the brain that triggers the seizures can be identified with pinpoint accuracy.
Cue Professor Duncan, Dr Fergus Rugg Gunn and the team. They have been using conventional MRI, which is a common technique for imaging parts of the body using magnetic fields, particularly for disorders affecting the brain and spine such as tumours.
The researchers have adapted these techniques to act as ‘windows on the brain’ in between episodes of seizures. Whereas normal MRI scans measure the amount of energy that water molecules give off in the brain, the researchers have developed new ways to examine the actual movement of them, known as ‘diffusion tensor imaging’.
By using these new techniques, which were recently published in the acclaimed medical journal The Lancet (May 18, 2002), previously undetectable abnormalities have been shown in many patients. And some of these patients, like Janet, have gone on to have surgical treatment with successful results.
Professor Duncan, who is Head of the Department of Clinical and Experimental Epilepsy at University College London (and is also Medical Director of the National Society for Epilepsy), said: “^People with epilepsy can take some comfort from the fact we are narrowing down the likely causes and consequences of this potentially-devastating disease of the brain^.” But he added: “We still have much to learn, and sadly this is unlikely to happen without generous donations from charities.”
Fortunately for Professor Duncan, Action Medical Research has recently awarded almost £180,000 to help him further his promising research.
In this latest three-year study, which has been generously supported by the Garfield Weston Foundation, the research team will be evaluating new MRI techniques, mainly after seizures, to identify changes that occur in the brain.
Professor Duncan, who will be joined by physicist Dr Gareth Barker, says: “In addition to telling us about the effects that seizures have on the brain, we hope that this research will help even more with identifying the source of epileptic activity and whether it damages the brain.”