Epilepsy: what is it, what treatments are available and what it is like to live with

Oscar Maitland is determined to reach the 3,200 ft Scottish summit to raise vital funds for Epilepsy Action.

Oscar, from Arundel, was diagnosed with epilepsy three years ago.

He said: “When I was 8, I had some strange episodes. It felt like I had other peoples’ dreams or memories in my head and I would feel really sick. Once I had a tonic clonic seizure that lasted more than 20 minutes. A paramedic stopped the seizure and took me to hospital, and I ended up being diagnosed with temporal lobe epilepsy. It turned out that all along the strange episodes I had were focal seizures.”

One of Oscar’s missions is to raise awareness of epilepsy.

“Lots of people don’t understand epilepsy at all, or they expect everyone’s seizures to be the same: to look like a ‘fit’. It’s important to me that people know that everyone’s seizures look and feel different. Epilepsy can also affect my emotions and my worries about becoming more independent in the future.

“I wish people were not frightened of epilepsy and knew how to help. Sometimes I’m scared of being on my own in case I have a seizure. But I can still do everything like everyone else. Recently I stayed overnight at Scouts camp and we built our own shelters. I also went on a school trip and tried abseiling, climbing and archery. So I’m building my independence and confidence.”

After researching epilepsy charities for a school project, Oscar chose to raise money for Epilepsy Action as it seems positive about helping people live better lives. He has already raised £1000 at a school event.

He said: “It would make me feel so proud to get to the top of Ben Lomond, like I can overcome anything. I love fundraising for Epilepsy Action because it gives me a positive way of helping other people, instead of getting upset that I have epilepsy. I hope that some of that money will help people like me to be free of epilepsy in the future.”

Oscar is determined to stay positive in the face of his condition.

“To anyone with epilepsy, I would say this. I understand that you feel worried, but there are lots of children who have epilepsy and once you know about your condition, people can help you in the right way. Keep talking about your feelings and find a way to fundraise if you can.”

Epilepsy is one of the most common serious neurological conditions in the world.

It affects around 600,000 people in the UK. This means that almost 1 in 100 people in the UK have epilepsy. Around 87 people are diagnosed with epilepsy in the UK every day.

Murray Goulder, 42, lives in Three Bridges, Crawley, he was 16 and two weeks off taking his driving test when he lost control of the car for two minutes, his instructor took over and Murray decided to get help.

He said: “I have drug refractory focal onset epilepsy. This is due to cortical dysplasia in my right temporal lobe. My epilepsy is uncontrolled, even with multiple medications after 26 years.

“I have to be careful because I never know when a seizure might occur. I usually have five to six a month, but I once had 90 in a weekend and was hospitalised. I have to be careful when I travel as I have automotisms and have almost walked off of a train platform three times.”

Possible causes of epilepsy include: brain damage, for example damage caused by a stroke, head injury or infection, brain tumours, problems with the way the brain developed in the womb.

But in over half of all people with epilepsy, doctors can’t find a cause. It’s thought that our genes play a part in who does and who doesn’t develop epilepsy.

There are around 60 different types of seizure and someone may have more than one type.

Abi Muggeridge lives in Southwater has Juvenile Myclonic epilepsy, as well as absence seizures and tonic clonic seizures.

Abi, 34, started having tests for epilepsy when she was ten years old, after her dad noticed she kept daydreaming and not responding and took her to the GP. She was referred to a neurologist as she has a history of epilepsy in the family.

She said: “At first they thought I had childhood epilepsy, of which they thought I would grow out of, but as I got older it became more apparent that I would not. During my teen years on a routine check up with the neurologist, my mum and I were told that I would not grow out of it, and I would have epilepsy for life; not the best day of my life.”

She manages her condition with medication in the morning and evening.

One of Abi’s triggers is lack of sleep, for others the seizure triggers include not taking their medicine, stress, alcohol and recreational drugs, flashing or flickering lights, monthly periods, missing meals and having an illness which causes a high temperature.

The main treatment for epilepsy is epilepsy medicines.

These are sometimes called anti-epileptic drugs or AEDs. The medicine doesn’t cure epilepsy, but helps to stop or reduce the number of seizures.

Many people find that their seizures stop with the first or second medicine they try. But some people need to try a few medicines before they find one that works well for them. And some people need to take two or more epilepsy medicines together.

Murrary’s advice to anyone who has been diagnosed is to take control and don’t let the condition rule you.

“It is part of who you are. It may be controlled but don't let it scare you. Talk and teach others about it because they may have to help you at some point and they won't be as scared. If you don't know about your condition, ask your consultant. Keep a diary for your seizures and if your medication isn't working well for you, again, talk to your consultant.”

To sponsor Oscar, visit www.justgiving.com/fundraising/mountinclimb

For more on Epilepsy Action, visit www.epilepsy.org.uk