Caroline

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

Caroline is a nutritionist, epilepsy support group leader and surfer.

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.

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 the 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.

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.

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.

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.

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

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.

– Caroline, June 2020

GO TO CAMPAIGN PAGE

Through the incredible efforts of our supporters over the last twelve months, we are delighted that Epilepsy Research UK was able to make £1.3 million available for our 2020 grant awards.

Read More Here

We’ve said it before, and we’ll say it again – our research would not be possible without the generosity and commitment of our supporters. Here are some of their incredible stories.

Read More Here

Do something amazing today and make a donation to ERUK. Your money will go towards driving and enabling life changing, life saving research projects which help people with epilepsy.

Read More Here