letter to epilepsy.com (request)

I have temporal lobe epilepsy, which can often present as atypical seizures (panic-attack type symptoms, dizziness, light and sensory changes).  I moved a lot during the years of diagnosis, and never had consistent (or even good) neurological care -- as a result I was left feeling alienated and as if I was going crazy.  One of the things that has proved most valuable in living with epilepsy are resources, books, articles, etc which present descriptions of other people's temporal lobe seizures. Clinical neurology typically presents a narrow and black-and-white description of a seizure, but in reading about and speaking with other people with seizures I've learned that no seizures are alike, and similarly everyone experiences it differently.  While epileptology can often be treated as a hard and fast science, it is not -- the brain is an incredible mystery, and the science of trying to understand it can be exciting as much as it is daunting.  A seizure is a fast head-long trip into this mystery; patients are thrust forward into a realm that neurologists are only now beginning to name and identify.  It makes sense that along with learning to not be afraid of these trips, patients ourselves hold the key forward.  We are too often silenced by backward-glances to neurologists to either confirm or deny our experiences; the question “is this a seizure” is a common refrain on this website.  The answer holds the power to bring us onto solid ground or shatter it; we hope for “no” while silently praying for “yes” – a clue to a diagnosis that, while scary, nonetheless takes the unknown and puts it into the hands of a professional.

Neurologists take this title and do wear it proud.  But I propose that we might also consider ourselves, epilepsy sufferers and their caregivers, a professional as well – if not in education, at least in experience.  We are co-explorers in the mystery of the brain.  We depend on neurologists for their knowledge and insight into the structures of the brain as much as neurologists depend on us – we are the light-holders, the first-hand seers, the explorers headed to unknown territory and reporting back.  But this depends on us, on our bravery to report back. 

In the years surrounding my epilepsy diagnosis, I supplemented (often times in lieu of) information from my neurologist with research I could find, particularly on temporal lobe epilepsy.  What I found was almost entirely clinical – reports and studies from one neurologist to another.  While these articles were augmented by case-studies, or illustrations using real-life patients told for the purpose of a for-drawn conclusion, they were told entirely second-hand.  This website, and similar foundations like it, fills a large void in the need for resources for epilepsy sufferers and their caregivers.    

Epilepsy.com is an unrivaled source of knowledge and comfort for epilepsy sufferers and their caregivers.  The community forum, in particular, represents a major step in the drive to focus on patients.  For too long epilepsy sufferers and their caregivers have had to translate clinical jargon, farm through medical articles aimed at doctors, and come to terms with pat answers from their neurologists without a sufficient avenue to ask questions and seek answers in the form of comfort from fellow sufferers.  The community forum is an invaluable resource to navigate the uncertainty and emotional toll that accompanies a diagnosis. 

What is missing, however, is a forum for recording descriptions of seizures.  Aspects of this is currently found in the community forum under different topics, yet it is veiled by the asking of questions – “is this a seizure, or is it not?”  The closest I can find to what I have in mind is the “What is a seizure” or “Types of Seizures” pages under “About Epilepsy: the Basics”; but again, this is from a clinical point-of-view.  The clinical terms (absence mal, atonic, etc) are important, but they are also not complete – what would make them complete are personal accounts or descriptions from epilepsy sufferers on a type of seizure.  Seizures are unique in that they often come down to personal experience – while an EEG or MRI can tell a doctor whether or not a person has epilepsy, they cannot say what that experience is like.  Therefore it is even more important to focus on the patient, and a patient’s experience – this, at least, communicates the importance of chronicling one’s seizures, and provides comfort in realizing that one is not alone. 

I’m sorry for this long-winded request.  I’ve been thinking that personal accounts and descriptions of seizures from epilepsy sufferers would be very helpful in providing a level of knowledge and insight not found elsewhere, though I haven’t been able to find this anywhere else on the internet (and a question I posted on the community forum asking if anyone had any ideas on finding resources for this came up with no responses) – and so I thought that I would propose the idea to you.  I believe that the way forward in the care and cure of epilepsy is through patients ourselves -- through our descriptions of seizures and our stories of learning to manage them.