One in three people living with epilepsy in Scotland who took part in a recent survey, say they have depression, according to a report by Epilepsy Scotland.

The findings come from a national survey promoted by Epilepsy Scotland in February and March this year which received 718 responses, including all Scottish health boards.

Nicola’s Story

At the age of 20, Nicola from Kirkwall started experiencing seizures for the first time.

It forced her to take time off work and to speak to her GP before being referred to a neurologist where she was diagnosed with epilepsy.

Receiving a diagnosis felt like “the end of the world” and she was forced to give up her drivers licence which restricted Nicola’s life and meant she had to depend on her partner and family for lifts to work and to see friends.

She said:

“I really struggled with losing my driver’s licence. I lost all my independence and really had to rely on other people to take me places because we weren’t really on a bus route.

“So it was a case of making sure I had a lift from Ross (her partner) or my mum or dad. They were really good with me and were always there, but it’s quite a lot of responsibility for them and I hated asking all the time.

“It was really frustrating because I’d get so close to getting my licence back but then I would have another seizure which would put it back again.”

It wasn’t just the loss of Nicola’s independence that impacted her life following an epilepsy diagnosis, the long period of trying out different anti-seizure medications, some of which caused sickness, felt never-ending.

She said:

“When I first got diagnosed I was mentally quite low and I never thought I was going to get through it.

“I was in a rut of trying medications where I was trying something and then trying something else, which would work for a little while and then they would have to change the medication again. It was really frustrating.

“It felt like I was never going to get out of this. It was like I was in a box and I couldn’t get out of it. I felt really, really stuck. I remember feeling really sick on a lot of medications and was spewing. It felt pretty rubbish.”

Thankfully, after a few months of trying, Nicola found a medication that worked for her.

“There are so many medications out there and I just kept going until I found the right one. I thought I was never going to find something but I have now and I take it every day and night and I’m fine. I would say to others going through the same that you can get through it.”

Six years later after her diagnosis, Nicola is recently married to her partner Ross, has two young children, and because her seizures are under control, has been able to get her driving licence back.

She hopes her journey, including the many barriers she has faced and overcome, can inspire others who are living with the condition and that more support can be put in place in Orkney and other rural parts of the country.

She said:

“I did feel in Orkney there wasn’t much of a support network for people living with epilepsy. I feel it would be good to get something in Orkney to support people living with epilepsy so that they don’t feel so isolated and alone.

“When you first get diagnosed, because it’s all new, it’s quite overwhelming. I remember being really upset and thinking ‘this is the is the worst thing ever’ because I didn’t understand it and I didn’t know anyone else who had it.

“But there’s loads of information available which you can find to help understand the condition better. Once you get that knowledge it can be ok and it’s just something you learn to live with.

“A part of my epilepsy I find tricky is my memory, which was caused due to seizures or the medication. I really struggled with that because somebody would ask you about something and you just can’t remember it.

“I can still struggle with it but I’ve learned some mechanisms for helping with it now like I write things down and keep a diary. Those coping mechanisms have really helped me.

“My employer has been really good with me to make sure that I’m supported and I have somewhere to write things down if I need to.

“I’ve also realised what my seizure triggers are – which are tiredness and being in stressful situations. So I make sure that I get enough rest and I do what I can to prevent me from being really stressed about something because I don’t want to take another seizure.

“I also couldn’t be in a room with flashing lights, so when I was younger and wanted to be going out with friends it can feel like the worst thing ever to be missing out. So if I wanted to go out partying I had friends who had to make sure it was somewhere which didn’t have flashing lights. My friends that were closest to me realised how difficult it was for me and wanted to support me as much as they could.

“I’ve been lucky to have so much support from my friends, as well as my wider family and Ross‘s (Nicola‘s husband) family, but particularly Ross, my mum and dad, and my sister.

“And I would say the epilepsy nurses in Aberdeen were amazing. They were always on the other end of the phone, as was Epilepsy Scotland – my mum phoned them quite a lot for advice when I needed it.

“I think people living with epilepsy can live a normal life, you just have to keep going and not let it beat you. You have to beat it.”

The report also found that 46% of people living with epilepsy who took part in the survey said they had anxiety and 54% believed the condition had a “significant impact” on their mental health.

The results have prompted Epilepsy Scotland to call for an increase in the number of mental health professionals (such as counsellors) available to people living with epilepsy and for in-person epilepsy support groups to be expanded across Scotland.

There is also a call for the Scottish Government and local authorities to launch a public awareness campaign around epilepsy and to encourage more people living with epilepsy to seek support.

Lesslie Young, Chief Executive of Epilepsy Scotland, said:

“The findings of the survey we conducted are a cause for real concern.  They clearly demonstrate the level of uncertainty and pressure so many people living with epilepsy face every day of their lives.  It also clearly demonstrates how that impacts their mental health and wellbeing.

“Whilst everyone experiences their epilepsy differently, what is clear and is supported by the results of this survey is whether seizures are well controlled or not, many are, by their own admission and by diagnosis, suffering with their mental health and need targeted support. 

“People living with epilepsy, through this survey, say having someone to speak to and connecting with others through support groups is what they need to support their mental health.

“I strongly urge government and stakeholders to work together with us to ensure we provide the much-needed support people living with epilepsy are asking for.”

You can read and download the report via Epilepsy Scotland’s website by clicking here.