Many people with epilepsy experience social isolation. One of the most common causes is the fear of potential embarrassment if a seizure occurs and this often prevents people with epilepsy from attending social functions or sharing their story with others. Simon Privett from the UK is an example of the contrary. Simon is actively involved in a number of initiatives and uses both face-to-face meetings and social media to engage with others affected by epilepsy. Later this year, he will be awarded with the prize Volunteer of the Year by Epilepsy Action. In this interview, Simon shares his story and work within the epilepsy community.
“This was on Purple Day (26th March) last year. To celebrate both Purple Day and 2 years or seizure freedom I did a sponsored skydive. I raised £1300 for Epilepsy Action and had an amazing experience whilst doing it!”
Firstly, who’s Simon?
I’m 37 and was born and raised in Devon, a beautiful, scenic part of South West England. I was an unremarkable child, the youngest of 4 brothers and during my childhood, I wanted to enter the Royal Air Force as an officer when I was old enough. Then, aged 14, my dream was shattered. I had my first seizure on 27th December 1996. I had several more over the coming months and was diagnosed with Idiopathic Generalised Epilepsy, characterised by Tonic-Clonic Seizures.
At this point in my life, I am happily married to Oona, a beautiful girl from Finland. We’ve just celebrated our third Wedding Anniversary but have no plans for a family beyond our two wonderful hamsters! I currently work in catering, as I have since the age of 16 but am working on moving into a more full-time role working with epilepsy research and industry to improve the lives of those with epilepsy. I want to give people a better experience than I had growing up.
What can you tell us about your first seizure?
I don’t remember the seizure itself but it happened during Christmas. My brothers, my parents and I were at my maternal grandparents’ house together with the rest of our family. While the adults were sitting in the lounge room talking about adult stuff, I went to play with my older brothers in the dining room. We were sitting around the dining table playing a board game. I can’t recall if anything was preceding it, but I suddenly fell off my chair to have my first epileptic seizure. I was very lucky because one of my older brothers was working as a lifeguard at that time and had received fairly extensive first aid training. He recognised the symptoms and was able to handle the situation and coordinate other family members to call the ambulance and administered first aid until the paramedics arrived.
Obviously, my family was very shaken. Experiencing a seizure, and especially one happening to a younger member of the family must have been so terrifying. In the months to come, I suffered from several further seizures.
“My brother started convincing himself that my seizures had to be because of him - and feared that he would lose me.
Simon Privett, UK adult with epilepsy
By coincidence, one of my brothers was involved in all my initial seizures in some way, shape, or form. Being either around me or on the phone at the time of my seizures, and he started convincing himself that my seizures had to be because of him - and feared that he would lose me. He was maybe the alpha male out of the four of us. He was working as a self-employed plumber. He wasn’t prone to displaying emotions, but the thought that he might not see his brother anymore, he became quite emotional. A bit by coincidence, one of his best friends at that time was working at a local hospital for people with mental health conditions. My brother called this friend and poured his heart out. “I’m really scared I will not be able to see my brother anymore”. This friend then asked, “This brother of yours, my guess is he either 7, 14 or 21 years old.” And at that time I was 14! The friend went on to reassure my brother that, for those not born with epilepsy, these were common ages for epilepsy to develop. It’s something to do with hormone changes etc. He went quite a long way reassuring my brother that my epilepsy and seizures were partly by coincidence and in no way related to him!
How did your parents deal with the fear and anxiety that came with your epilepsy diagnosis and seizures?
If you’d ask my mum, she’d say that this fear is something that never goes away. I have had only one seizure in the last three and a half years. She doesn't stop worrying though, even today my mum is worried for me. They say there’s nothing stronger than a mother-child relationship, and I think that shows how parents - and mothers in particular - worry about their child. One of the peculiarities, when you compare epilepsy to other medical conditions, is that a seizure can happen anytime in any place. As a parent of a child with epilepsy, you will always have that niggling fear in the back of your mind. Any unexpected phone call and the adrenaline immediately kicks in.
After my diagnosis, my parents made it very clear that my epilepsy should not define me as a person. It was never a tale of ‘we can’t do this, you can’t do that’. They have always been incredibly supportive. However, even after all these years, my mum would still go into panic mode in case of an unexpected, late-night phone call.
“As a parent of a child with epilepsy, you will always have that niggling fear in the back of your mind. Any unexpected phone call and the adrenaline immediately kicks in.”
Simon Privett, UK adult with epilepsy
Can you tell us something about the change in therapy and medication over time?
I started off with Tegretol (carbamazepine). The dose went up and up with each seizure. In my early 20s, I had a prolonged period of seizure freedom. I got my driver’s licence at age 21. Quite a lot later than my peers. Everything seemed to be all good. Then I had a period of instability in my personal life - that lead to a breakthrough seizure. After that, the Tegretol did not seem to cut it anymore.
My next drug was Keppra (Levatiracetam). The dreaded Keppra. Keppra to me is a bit like Marmite. This is a thick and salty spread based on yeast extract. People have a love-hate relationship with Marmite and the same can be said about Keppra. Some can control their epilepsy well with Keppra, with no side effects, while others struggle with aggression, anxiety, irritability - maybe more impactful and noticeable to close family members than the person itself. When you are on Keppra you don't realise how awful you are to other people or how you are overreacting to the small stuff. I still remember during a Christmas party I ended up throwing a full can of fruit cider across our flat. For some reason, I was absolutely furious and our friends visiting were asking themselves “where did that come from?”. To this day, I have no idea what made me so angry that day! By Oona’s own omission, she would not have married me if I hadn’t come off Keppra - and my Mum was scared to be alone with me whilst I was on it. But some people do manage to take it with no side effects.
After some time, I was pulled off the Keppra and started with Epilim (Sodium Valproate). The Epilim was able to stabilise things, yet I would have occasional seizures. Of course, another contributing factor was that I was settled and had recently moved together with my girlfriend. I noticed a huge change when they added Lacosamide in with my Epilim. That done, I went almost 3 years seizure-free until I once forgot my medication and that combined with stress at work led to my last seizure back in March.
You have been very active in the local epilepsy community and chat groups. How did it all start?
With my own lived experiences and the fact that I was seizure-free, I wanted to give something back to the epilepsy community. I had been hearing many good things about the coffee and chat groups of Epilepsy Action but realised that my closest group was almost 70 miles away! Exeter is a relatively sizeable, culturally diverse city with a big NHS campus and a huge university, so both the charity and myself saw the potential for a local group here.
In 2016, I set up the Exeter group, and in the months to come, I started to get requests for a group a bit further south, in Torbay. Public transport is not ideal between Torbay and Exeter so there was a need for a more local group. So for the last two years, we’ve had a group in Torbay too. The most recent development, this year has been a coffee chat group at the University of Exeter. Actually, one of the Exeter group members works at the university so he’s been very helpful setting this up with me.
And the contact and collaboration between the coffee chat groups and the university have been very unique hasn’t it?
At a fairly early stage of the Exeter coffee chat group, I was contacted by researchers at the University of Exeter. They were researching epilepsy and were looking to collect some more feedback on the work they did. This was the first seeds to what grew and blossomed into the more expansive and professional relationship I have with the university today. This November I am delivering some awareness training for their drama department and in September we had the ICTALS conference where I was part of the organising committee. ICTALS is a relatively technical academic conference and we thought it would be unique to bring in the patient perspective. During the first day of the conference, we had five people with lived experiences with epilepsy talking in front of an audience of researchers, doctors and industry. I was one of those speakers and three of the others were people from my groups who I had invited to give their stories. Over the next few days, people with lived experiences were attending the conference programme. Through Epilepsy Action these people had a dedicated space where they could have some privacy or have some of the more technical terms and discussions explained by members of Exeter Universities Epilepsy Research team.
And lately, your work with epilepsy is becoming more professional?
Yes, as one example, I am currently a member of the MAGPIE - (Modelling Advisory Group Public Involvement and Engagement) at the university. Here I offer my lay perspective and feedback on several research initiatives. The MAGPIE group work on projects across all areas of healthcare and of our key focuses is to make sure that researchers keep the end patient group at the heart of everything they do - it has to be relevant to the people they hope to help. I find this work very meaningful and would like to develop into similar roles in the future and possibly make my epilepsy engagements a full-time job. I recently launched my own website, so those interested in learning more can take a look.
Finally, what’s your message to the epihunter community and the children, youth and adults dealing with (non-motor) epilepsy?
I’d love to go out with some short snappy and pre-rehearsed message! What I do have is a small example of the difference it can make to just meet other people. I genuinely believe in the power of engaging with other people. If I make a positive difference to just one person’s life. Then it has been worth doing it!
When it comes to non-motor seizures, the accuracy of seizure reporting is one big topic. Quite often the people with absences are either unaware or not quite sure of when they have had these seizures. This means that reporting of incidence ratios becomes notorious unreliable. So something that could track this for them, would not only be useful for them but also for their neurologist.
Twitter has also played a big role for me (Simon's account is @simonprivett). You would be surprised to see how big that community is and how hugely caring and supportive others with epilepsy can be. Even if you would not be very active yourself, it’s also possible to follow other people with epilepsy and epilepsy organisations and their activity. There are other people out there going through the same.
If you have support groups in your area, go ahead and join them. If you have no group, go online! The epilepsy community brings people together. Epilepsy can be really scary. I have had periods of depression and thoughts of self-harm. But I have come out of that, and I am a much more positive person today.
Do you recognise this?
Does this story sound familiar? How do you and your family deal with epilepsy? Do you also want to share your story or share an experience about "living with" epilepsy? Send us your story, we have the perfect home for it! Every experience, no matter how small, can offer comfort to others. Rest assured, your testimonial remains as anonymous as you want.
Thanks to Simon for sharing his story.
Why we do what we do
1 in 3 people with epilepsy suffer from uncontrollable seizures despite medication. We believe current digital technologies are able to create a massive impact on the daily life of people with epilepsy. At Epihunter we create digital solutions to make epilepsy matter less at moments that matter most. Our first solution is for people with silent, difficult to notice absence seizures.
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