I have had symptoms of temporal
lobe epilepsy as far back
as I can remember

Nelle, a musician, believes that her epilepsy has contributed to her creativity. She explains how difficult it was for her to get an epilepsy diagnosis, not least because she found it difficult to describe her abstract experiences when having a seizure.

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’!

– Nelle, March 2017

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