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Why should research into refractory epilepsy be a priority?

Eleanor

Eleanor

Epilepsy Research UK Supporter

- Refractory epilepsy Why should research into refractory epilepsy be a priority?

Date Published: April 12, 2023

Author: James Matejka

Epilepsy began unexpectedly for Eleanor in her thirties. She was diagnosed with complex partial seizures and has never since experienced long seizure-free periods. Here, Eleanor shares the impact of uncontrolled epilepsy and her hopes for future research.

Epilepsy for me was a ‘bolt out of the blue’. It started when I was 34 years old. Apart from regular bouts of hay fever in spring and summer, I was in good health. None of my four siblings have epilepsy, neither do any of the next generation including my twins.

Complex partial seizures were eventually diagnosed, initiating in both the left and right temporal lobes of the brain. Seizures from one side did not provoke the other in my case, so I hadn’t experienced full convulsive seizures (so far)! At the time of my diagnosis, I was working full-time as a Medical Information Officer in the pharmaceutical industry, answering scientific and technical questions from health professionals about the medicines the company produced. This was at a time before the internet, so this role was necessary. Although glad I was able to continue working, I made no further career progress after diagnosis. A deterioration in my health through increased seizures and side effects of medication eventually meant I had to stop full-time working when I was 51.

For my family, my husband became my carer and my seven-year-old daughters ‘lost’ the rest of their childhoods, as they had to look after me when I had seizures too.

Apart from the first 10 months of taking medication, I have never enjoyed long periods without seizures. Until recently, I experienced about 10-15 seizures per month lasting between five and 30 minutes, with no warning of them starting. It meant doing anything on my own was worrying, so I lost a lot of self-confidence. When doing voluntary work or joining a new organisation, I have to be open about my condition and let people know what to do in the event of a seizure. This has closed doors to a wide variety of roles and planning activities has become problematic.

With my interest in medicine, I followed several Epilepsy Research UK webinars to increase understanding of the condition. I also took part in the UK Epilepsy Priority Setting Partnership process. I was pleased to see ‘What causes drug-resistant (refractory) epilepsy, and how can it be best treated?’ included in the Top Ten research priorities but was slightly disappointed that ‘seizure severity’ was not to be measured in all new clinical trials. It’s hard to believe refractory epilepsy impacts around one third of people living with epilepsy – around 200,000 people in the UK alone.

I believe refractory epilepsy should not be something for which doctors automatically trial the latest medicine. More should be done to find the cause of the epilepsy, considering the person as a whole. For instance, when is epilepsy most prevalent; in people with certain types of seizure? In cases where epilepsy arises starts suddenly despite no clear brain damage? Or for those who first experience seizures when they are in middle age? Is there a genetic tendency towards having epilepsy and could this be reversed? Is epilepsy linked with the diet and bacteria in the gut? I developed irritable bowel syndrome (IBS) around the same time and seizures often precede bouts of diarrhoea. Or does epilepsy arise most commonly from an immunological change? Seizure numbers are higher for me during the hay fever season or when suffering colds. Can anything be learnt from alternative therapies such as acupuncture?

Epilepsy is a complex condition and with that brings many questions. I’m hopeful that, as refractory epilepsy is a priority for research into epilepsy, we may start to find answers in the near future. My hope for epilepsy research is that thinking ‘outside the box’, and considering the individual circumstances of each person with the condition, might bring new ideas on how to help people with this condition finally live seizure-free.