Interview with Caroline, epilepsy support group leader and surfer living in Plymouth

Caroline is an epilepsy support group leader and surfer living in Plymouth. In this interview, she discusses living with epilepsy, her love for the outdoors, and the ways in which she is helping others in the south west living with the condition.

How did you find out you had epilepsy? What was your immediate reaction to the news?

I spent much of my childhood in and out of the hospital and on various types of medication. I had many tests for a clear diagnosis, but they found nothing until the eventually did a sleep-deprived recording of brain activity known as an electroencephalogram (EEG). When I was 7 years old I was eventually diagnosed with petit mal seizures, now known as absence seizures.

I suffered depression badly as a child and hated “being different”. I think epilepsy was a very much hidden topic and not talked about when I was younger. I was over the moon when, as a teenager, I was told that my epilepsy had “gone away” and I could lead a normal life and learn to drive.

How has epilepsy affected your life?

After being cleared of epilepsy for almost 10 years, in my early twenties I developed tonic clonic seizures, or grand mal seizures as they were then called. I was devastated.

I spent a week in hospital after my first tonic clonic seizure. They tried to find a cause but could not give me a diagnosis. I continued to suffer from deep depression, anger and denial. After years of sporadic seizures and countless hospital visits, I was finally diagnosed with tonic clonic epilepsy. I was still in denial and refused to accept I had epilepsy; I kept it hidden like a monster I refused to let out. I think my family and loved ones struggled too. I really struggled with the medication and my family were desperate for me to be safe and under control.

How did having epilepsy impact your love for the outdoors and adventure?

As my life moved on, I developed a passion for health and fitness, and with this passion came an improved mood, more energy and fewer seizures. The more I focused on improving my diet, mind and body, the better I became. I was able to control my illness through nutrition and exercise.

After spending so much time researching the benefits of food and exercise on the brain and body, my passion became my career. I now run my own business as a nutritionist and wellbeing coach, teaching the benefits of a healthy lifestyle. My love of the outdoors really came from my change in lifestyle. I stopped drinking alcohol (my biggest trigger) 5 years ago.

I searched for new ways of making myself happy. I learnt to surf and snowboard, took part in Tough Mudder events, challenged myself physically and mentally, but also found inner peace in being outdoors, especially being in nature. I love the woods, the moors and the ocean.

Epilepsy is a very isolating and misunderstood condition. The more research we can do, and the more support and help we can provide for each individual, the better.

Tell us more about your love of surfing

My favourite thing in the whole world is surfing and I find complete peace in a mind that never really switches off. I believe epilepsy has given me the determination to succeed in life and the drive to find inner peace and improved health and wellbeing. I am such a determined person and achieve anything I put my mind to. I truly believe epilepsy has made me this way and in some ways, I am grateful for that. It has definitely made me appreciate the small things in life.

Epilepsy still affects me. I do not suffer from seizures very often, however the little undercurrents that run in my brain (epileptic activity) still affect me, in only a way that someone with epilepsy can understand. Things such as daily headaches, mood swings, fatigue and insomnia, not to mention the side effects of medication. However, the ocean and the great outdoors keep me sane and often heal me whenever I am feeling low or suffering brain fog. It’s like it changes the chemistry in my brain and I suddenly feel alive, happy, positive and clear-headed again.

What would you say to anyone newly diagnosed, or their family, as a result of your experience of the condition?

I found understanding and accepting the condition the hardest part of being diagnosed with epilepsy. Denial was a big factor.

From my experience, I would advise anyone newly diagnosed and their families to do as much research as possible on the condition itself. Which epilepsy they have been diagnosed with? What lifestyle changes can they make, alongside medication, in order to control or reduce their seizures?

I believe education and support are key. There are many excellent books on living with epilepsy and how you can help yourself through nutrition, relaxation and some forms of exercise. Take one step at a time and try to talk to other people who understand what you are going through. It has helped me so much and I have finally accepted my condition through talking to others in my situation. It can be hard to stay positive at times, but the more you can do to help yourself and surround yourself with positive people and a support network, the better.

What is your hope for the future? Through research? In general awareness and understanding?

My hope for the future is that more research will be put into lifestyle changes, natural therapies and how positive thinking can reduce seizures, through the change of chemistry to the brain.

I think overall lifestyle changes, including positive self-talk and wellbeing should be a key factor to be researched and how certain foods and healthy diets (not just the ketogenic diet) should be thoroughly researched.

It is proven that stress can induce seizures so the opposite must apply; if stress is a trigger then happiness and positivity must be a prevention. There has been much talk of this and people practising this, but I have not seen any significant research in this area.

The same for diet, poor diet and blood sugar is proven to cause seizures so a healthy nutritious diet that stabilises your blood sugar and feeds the brain and body the beta nutrients must also prevent diet-induced seizures. Again, I have seen no significant research on this and would be great to see.

Depression is a major part of epilepsy and a major cause of more seizures. The more that can be invested in research into this area, the better.

I also think more needs to be done to help people understand what epilepsy is – I feel there is a real lack of awareness and research compared to other brain conditions and illnesses. Much more help and support are needed outside of the medical network.

Epilepsy is a very isolating and misunderstood illness and the more research, support and help for each individual, the better.

– Caroline, June 2020

You can find Caroline’s Plymouth Epilepsy Support Group on Facebook here.