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Epilepsy Blog Relay: The temporal lobe epilepsy (TLE) experience

This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018.  Follow along!

Nancy’s Story

I was diagnosed with epilepsy at the age of 7 – both grand mal and temporal lobe. My mother also had temporal lobe epilepsy as a child and all of my four siblings were eventually diagnosed with it too. We all experience it in unique ways and this has given me a lifelong fascination with this type of epilepsy and – in common with a lot of others I think – an interest in consciousness, the mind and religious or ‘mystical’ experiences.

Related article: Seizure education is a family affair

Temporal Lobe Epilepsy

I am now 41, an organic gardener and garden designer and my epilepsy has mostly all faded away. However the impacts of my epileptic years are still quite strong. The main way it affected me as a child was through what I dubbed ‘funny feelings’. These are also referred to as ‘auras’ and I think ‘partial complex seizures’ – seizures in the temporal lobe. These experiences for me always began with a strong feeling of deja vu and a sensation a bit like falling off the edge of a roller coaster – an ‘oh no, here we go again’ feeling. When I was little, this would be quite frightening. Sometimes at the beginning, I would get a smell – I remember pepper. One time at least I got whispering voices, many, many voices all at once. Always, I would feel like half of my consciousness was split off into another place, leaving the other half in my body. In this other place, I would be able to look around, walk around, explore or sit and observe. They varied in strength and so I was sometimes able to ignore it enough to continue functioning in the real world – continue with a conversation, for example. Other times, it was too strong and so I would have to sit tight and go with it until it wore off.

When I was in my late teens – I apologise now for what I’m about to admit – I had a mystical experience. I’ve got to be honest – I feel like I’m admitting to murder or something awful like that just by writing this down! I’ve always hidden this experience for fear of being thought a nutter! But I know what I felt and it was joyous, incredible, a feeling of one-ness and that I was in touch with the answer to everything – like the universe had taken a truth serum and all I had to do was think of the question and it would tell me. I felt euphoric, overwhelmed by the conviction that the universe is a loving thing.

How TLE can manifest

As strange as this might sound, it has brought meaning and direction for me. I think the insights I gained in that moment – and from subsequent similar experiences – have validity in the world, so I am not terribly interested in what electrical activity may or may not have been going on in my brain at that moment. But I am fascinated to know more about the experience of temporal lobe epilepsy and how it relates to other, historical descriptions of so called mystical experience or scientific revelation – eureka moments if you like. I have explored buddhist meditation and have researched the shamanic experience (through books only). I have spent the last 20 years learning about the science of ecosystem dynamics – how the world works. I am passionately driven to learn about the world and its consciousness, in order to discover whether the ideas that were impressed upon me through my epileptic experiences are true. Or perhaps more accurately – in an effort to remember what I learnt!

I accept that perhaps I’m chasing phantoms, so to speak, but it’s a fascinating journey. Made challenging, of course by my hopeless epileptic memory! However, I enjoy my work and ongoing studies in ecology and I find satisfaction in my increasing ability to bring health and wellbeing to the world around me.

Here are a few more stories on living with Temporal Lobe Epilepsy

NEXT UP: Be sure to check out the next post by Soo at livingwellwithepilepsy.com

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2 Responses

  1. bryan
    | Reply


    What a great explanation about how the mystical feeling comes with conflicting emotions. Thank you for your post.


  2. Gabriella L. Garlock
    | Reply

    I feel compelled to be logical regarding the medical explanation for my mystical, deja-vu and waking-dream seizures, but a clinical doctor’s approach is just SO unsatisfying an explanation for what makes me ME. Finally I had to shrug off modesty and admit, TLE seizures–and my reactions to them–have given me most of the experiences that have made me quite complex.

    So also finally I had to say, No, the reason I’m a writer isn’t merely Geschwind Syndrome: maybe it’s why I started, but somewhere along the way I got good at it.

    It’s taken years to realize this: maybe Geschwind WAS once my whole personality, but there’s a lot I can take credit for, too. That includes artistic impulses I choose to give in to. It includes my ability to understand complicated abstract theories. I’m more than the sum of my symptoms,

    Besides, God created sane, one-track thinkers unimpeachably logical and practical for some reason, too.

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