Nelle Fagan

I have had symptoms of temporal lobe epilepsy as far back as I can remember. As a child I would have strange sensations, I felt I was floating out of my body. The instances were quite euphoric when they first appeared and didn’t cause me many problems, but the episodes began to build in intensity as I grew older. At an unrelated doctor’s appointment, I described it to a doctor when I was around 11 years old. The doctor referred me to a paediatrician who concluded that I needed better lighting in my room when studying. I have never quite understood that explanation. Later when I was 13, I again went to a doctor who told me that it was just my age.

By the time I was 15 the episodes were extreme and would seriously affect my schooling, I struggled to put the complexity of these experiences into words so instead described them as ‘dizzy spells’. They were not ‘dizzy spells’ they were simple partial seizures. I would have extreme hallucinations where I felt I was ripped from my body, I would feel so intensely nauseous during these instances that I would sometimes vomit. It could happen 10 times a day for weeks then subside for a few months at a time. I felt locked inside my own mind, even as an intelligent child I couldn’t find the words to describe my experiences.

At age 16 I was at home with my family, The One Show was playing in the background. They were interviewing a girl who had temporal lobe epilepsy and her description of her ‘seizures’ hit me instantly. I researched TLE and found many other descriptions of seizures. It was so freeing to read so many similar stories to my own: until that point I felt as though I was the only person on earth who had these episodes. I finally had the words to explain what I had been experiencing. I was soon diagnosed with temporal lobe epilepsy.

When I was first diagnosed I was prescribed lamotrigine.  This immediately made my seizures more intense. I had a particularly bad seizure where I felt cold liquid being poured onto the top of my head. I felt it trickle through my skull as if my head was a sponge. The liquid ran through the roof of my mouth, it tasted like cold metal. I didn’t feel like myself on lamotrigine, I cried every day, even when I wasn’t sad. I was unable to function normally. I also suffered from a sudden and substantial increase in sweating! As a result my GP took me off lamotrigine after less than a month and I immediately felt better. My consultant was very dismissive of my side effects and said that lamotrigine was not associated with these kind of emotional symptoms. I was prescribed keppra, this worked well for me and I continued on it for a couple of years. My epilepsy was fairly well controlled except for regular auras which are notoriously hard to control.

At around the age of 20 I had become very interested in natural medicine, I felt as though medication was not something that I could see myself using for the rest of my life. Under the supervision of doctors I came off my medication and I experimented with a ketogenic diet. I was also dealing with IBS symptoms at that time so I was eliminating foods that I believed to be a problem. I found that gluten was the cause of my IBS symptoms but strangely, I found it also correlated with my epilepsy symptoms. Whenever I re-introduced gluten into my diet I had seizures. I was lucky that during this time I had a very open minded GP, he was well read on new research into epilepsy and gluten intolerance and encouraged me to continue with my diet.

At this time in my life I am satisfied with the level of control I have over my epilepsy.  I have been gluten free for nearly 3 years and I have on average 1/2 seizures per year and occasional auras. My seizures occur during times of stress, I find that managing my stress levels and following a Paleo style diet work well for managing my epilepsy. I feel that epilepsy has contributed to my creativity and influenced my work as a musician. Temporal lobe epilepsy can be extremely lonely at times as it is not overtly obvious to an observer if a person is having a seizure. The main barrier to me receiving a diagnosis was not being able to accurately describe the abstract experiences I have during a seizure. It is important that we raise awareness of all kinds of epilepsy. I am very grateful that the one time I ever watched ‘The One Show’ was when they discussed TLE, or I may still have been trying to explain my “dizzy spell’!


March 2017