LOOKING back, Lewis Heathorn says that he would have chosen to have a few more epileptic fits if it had meant that he was happier.

Lewis, from Buridge near Whiteley, was diagnosed with epilepsy when he was 14, after his first seizure.

At first he struggled to accept his condition but things got worse for him when he went to university 100 miles from home, shortly after his medication had been changed.

Not only did he no longer have his close knit family and friend around him for support, but he was also suffering side effects from the new medication.

Recent research shows that he is far from alone.

The mental health of children and young people with epilepsy is at risk due to a lack of specialist services, according to a report, published by the Royal College of Paediatrics and Child Health. Children and young adults with epilepsy in the UK are four times more vulnerable to mental health problems, but almost 90 per cent of health boards and trusts do not offer any mental health support within epilepsy clinics.

Philip Lee, chief executive at Epilepsy Action, said: “The impact of epilepsy goes way beyond the seizures themselves.

"Young people with epilepsy are particularly vulnerable to anxiety and depression, even when compared to those living with other chronic health conditions.

"They are at a heightened risk of suicidal thoughts.

"We know that these problems often go undiagnosed and untreated.

"Teenagers with epilepsy need specialist mental health screening and support – it is shocking that most areas do not offer it.

"Epilepsy Action is working hard to bridge the gap, but it’s crucial that families get this help before they reach crisis point.”

Lewis had his first seizure when he was repairing a bicycle puncture. His uncle found him slumped over the bike.

The first Lewis knew of it, he was in an ambulance on his way to hospital.

"It was a harrowing experience at that age, not being able to remember much and regaining consciousness in an ambulance,” he said.

“Initially I tried to convince myself I didn’t actually have epilepsy, as it is a condition which is not always visible and my seizures were only occurring once every few months.

"But when I moved away to university, my seizures increased.

"This was particularly difficult for me, as I was now over 100 miles away from a close-knit family.

"I then changed medication, which was the hardest part of my journey. It did control my seizures better but came with adverse side effects, such as depression and mood swings."

Lewis found himself having aggressive outbursts, for instance, feeling very angry with other shoppers in the supermarket, as well as bursting into tears in front of his friends when he'd been feeling perfectly happy.

He says that he experienced a lack of mental health support from medical professionals.

"I told my doctor that I was feeling low and that I thought it was the meds. I'd done a lot of research about the side effects but my doctor said it was probably down to my university work or maybe an issue with my girlfriend, but I knew it wasn't any of the things he mentioned, because there wasn't a problem and I was looking after myself, eating well, doing plenty of exercise and so on.

"In fact, the support I received at University was extremely helpful. At both undergraduate and postgraduate level I received "study skills support" which included general mentoring/counselling, proof-reading work and even time management planning/skills.

"It was particularly useful to have someone to talk to without any judgement and someone who didn't know me very well. I felt like I could open up to them and tell them about what I was experiencing mentally.

"But I felt that my doctors were resistant to changing my medication because you can experience seizures as you come off of one medicine, but it was worth it in the end."

Lewis is now on medication that controls his seizures without affecting his moods. He gained a masters degree, and having been seizure free for a year and a half, has learnt to drive and is now the manager of a gym.

Lewis adds that he feels there is a lack of awareness of the links between epilepsy and mental health issues.

"I feel that the medical profession tends to separate them," he said.

"They don't want to treat them together - they want to focus either on seizures or mental health issues and not to connect them.

"Mental health is very important but I think it's often neglected in favour of controlling seizures, but in hindsight, I would probably have preferred to have a couple more seizures if it meant I was happier."

Amy-Jane Foster from Fordingbridge also says that epilepsy has had a significant effect on her mental health.

She began experiencing symptoms when she was 11 and was diagnosed with catamenial temporal lobe epilepsy epilepsy at 15.

"My epilepsy has impacted strongly on my life," she said.

"I have had problems with severe anxiety, depression, shyness, agoraphobia and chronic nightmares. I have experienced pure self-hatred and it took until two years ago for me to accept myself as someone with epilepsy and be proud. I am now 38 years old and my full diagnosis is temporal lobe epilepsy, Asperger's syndrome, severe anxiety disorder, severely low self-esteem, functional neurological disorder and visual impairment – I'm half-blind thanks to the epilepsy.”

Amy-Jane is currently unable to work due to ill-health and she, her husband and her eight-year-old son live with her parents, who help out with childcare when a seizure and its after-effects means that Amy-Jane needs support.

Looking back, she wishes that she had received more support as a teenager.

"What I and all my family needed was support from people who really did know what they were talking about," she said.

"There is no point being referred to a doctor, nurse or specialist if they don't understand your condition and problems. There should have been people available on a phone line back in the 1990s. People we could call and who could actually answer any questions, who really did mean it when saying, ‘Oh, I know how you feel’.

"I wished we knew about my autism and anxiety back then. My life as a troubled teen would have immediately made sense."

Amy-Jane thinks that it is still more difficult than it should be to find support for mental health issues that are impacted by epilepsy.

"I wish people were more aware of the mental health issues that can be caused by having epilepsy and the medication and the support that there is isn't advertised well enough.

"I'd encourage anyone who is diagnosed with epilepsy to talk, to ask for help and to seek out psychological and psychiatric support. "

Amy-Jane adds that she would like to see more awareness of epilepsy, in part so that people know how they can help someone having a fit, for instance sitting with them and placing a coat under their head, or walking with them if they are clearly dazed and confused.

She added: "What I really want for people with epilepsy is to stop feeling like we stick out like a sore thumb!"

*For more information and support, visit episepsyaction.org.uk. To donate £5 to Epilepsy Action, text PURPLE to 70500. Texts cost £5 plus your standard network rate.