my own account of growing up with epilepsy

I was first diagnosed with epilepsy between six and eight. As stated, every experience of epilepsy is unique to the individual. Sadly, much of the general public gets their first and possibly only definition of the condition from Hollywood story-lines. Contrary to way too many of these portrayals of epilepsy in general, I personally have never heard voices or hallucinated monster types suggesting I act out violently toward others, to be tracked down 4 commercial breaks and 57 minutes later by a hot crime drama detective kind enough to tell me I'm not crazy, I have something called complex partial temporal lobe epilepsy....(admittedly, there are the voices that repeat themselves over the phone; telling me how much they want to talk with me - over and over, for some 20 to 40 minutes, and to the point of distraction.....but doctors tell me there are no drugs or surgery to make those voices stop). I can't say I've ever suddenly floated up into the air with my head spinning on my neck either(although if I could...I would....I'd never have to wonder where I last laid down my keys again). And finally, I still see and hear epilepsy portrayed and instantly assumed as inclusive of and an indicator for lower IQs, learning disabilities and mental imbalance, yet like many others with epilepsy, my test scores were well above average (now they're dependent on coffee and spelchek); as a child my only confirmed learning disability was short attention span (doctors notes from that time state "precocious" - would you believe, many times), and I've been assured I'm as mentally balanced as the next person (although no one's ever told me how mentally balanced the referred to next person is - hey, works for me).

I actually did have complex partial temporal lobe epilepsy. While in these boringly un-Hollywood styled seizures, I would outwardly appear to be stoned or tipsy or as if I'd been experimenting with any number of recreational drugs of the time. They would appear to start suddenly and then stop just as suddenly, with a resulting tired fogginess when recounting them, although while in them I was extremely focused and aware, attempting to find a safe place to sit out the interruption to my senses, similar to a massive headrush blurring or muting the five senses. While occasionally I'd experience a sense of both having and observing myself having a seizure - experiencing both the lack of use of the 5 senses physically but seeming to also be able to (no idea of an accurate term for it) myself going through this - from something like an observational perspective, aside from this sensation, I could see, but as if the image was disintegrating into monochrome digital chips and blindness. I could hear, but as if through a rushing sound sensation. I could move my mouth to talk but could no longer make it produce the words I wanted. I could try to reach out and grab say what I hoped was a doorknob or chair, but wouldn't be able to recognize it's feel for the rushing sensation running through not just my ears but my whole body. This would be accompanied by strange smells and taste/nasal sensations (try this, imagine sucking in over-chlorinated pool water and getting a whiff of turpentine while standing up way too fast after sitting with your knees above your midline and, without letting it pass first, trying to complete an intended action and you've got an idea. Actually, for the '70s, I barely stood out.). Afterward, if asked what I recalled, I wouldn't be able to recall anything generally describable with the five senses and would have no sense of whether it had been a few seconds or many minutes. I'd only recall the sensation changes going on and my efforts at getting through them and, that recollection wouldn't be instantaneous. It would eventually come back to me, in the same way a dream you might be right on the cusp of recalling but forced to relax and wait a while for does still eventually come back to you.

In college I nearly died. Very fortunately it seems, I did finally find a doctor willing to look beyond simply raising dosages, and on finding out that my ('til then, worsening) loss of balance, bouncy double vision, falling in traffic crosswalks and down stairs, fading out in classes and anywhere else (I once came to from one of those hazy moments having to peel my fingers off the hot burners I'd fallen forward and caught myself on) were all just side-effects of the same anti-seizure drugs all the previous doctors had prescribed and raised each time I mentioned the strange new symptoms, and not related to the seizures at all, well I dropped everything and decided to travel (made sense to me). Eventually I opted for surgery having a 90-95% resection of the right temporal lobe, or a partial lobectomy. I had a headache for a month and then I was back to my self, so to say. I now see everything from a very left-brain perspective (go figure), my instant recall can appear instantly on demand, or instantly hours after the instant recalled for and I use 10 (ok, 20) words to say what 2 would accomplish ( I did say wordy).

After the surgery and experiencing further seizures even though far fewer, I read a book by Eliade discussing epilepsy from very different perspectives than those I'd grown up hearing. I kept on reading about more and more alternative views and differing practices, both past and present, than I'd ever been aware of before, eventually considering, practicing and relying on many of these alternative methods for further seizure control. Anti-seizure drugs never worked before surgery and only seemed to assist after surgery. Post surgery I've only had 1-3 seizures a year whereas pre had become several times weekly. Post surgery seizures became generalized tonic clonics (pre were only simple and complex partials), and most often during sleep cycles which I can more and more often wake myself from at onset, and pull out of in time to stop them. I've also learned more about diet and it's role in seizures. Many of the cool neat packaged foods I grew up begging for starting in the '70s and continued using as I got older had ingredients that when removed from my diet, seemed to eliminate most all of the seizures...which is great knowledge to have when addressing seizure control, but makes eating out and grocery shopping less than thrilling (lucky me, I never found grocery shopping thrilling to begin with).

I'll end just as I started, unsure of what more or less to include or not - and still keep you reading, not snoozing. There's an amazing amount of research out there presented both in favor of and against just about every theory proposed regarding epilepsy. I grew up hearing and considering (even if I disagreed) the standard definitions, reasons and expected futures generally proclaimed by the medical community and social culture of my parents' generation. Growing up it had been understood that doctors' prognoses were not questioned by mere mortals, that parents and teachers without the condition naturally knew better and more about such things than children and students (of any age) with said condition, and that Western medicine was the only true and respectable method of practice. I was well into adulthood before I consciously questioned this and began to make my own inquiries, look for multiple opinions and found the strength to disagree and state my own belief backed up with my own research and reasoning. It's taken a lot and I've burned some bridges in the process, but through this personal inquiry and research I've learned I'm not that different, that others have experienced the same in their histories with epilepsy its treatment and expected prognosis, and also like me, often only later eventually stopped and said "wait a minute". My hope is that whether you have epilepsy, know someone who does, have only ever heard of it from a tv crime drama or talk show, or simply recognize wondering about things you've always accepted and been steered and even scared away from questioning, both the doubt and possibility described on this page will inspire you to question and wonder, to weigh it all, to have an open mind and to consider why what's so easily been considered a given has been and whether it really is. Thanks for reading.

* Eliade, Mircea, "Shamanism: Archaic Techniques of Ecstasy", Princeton University Press, 1964, 29.
What's New in Neurofeedback, Vol. 9 No. 3 - March 2006, "In the Spotlight: Epilepsy", http://start.eegspectrum.com/Newsletter/mar2006.htm, downloaded June 2008.
** History of Epilepsy, http://www.ndsu.nodak.edu/instruct/nawrot/Courses/465Projects05/epilepsy/History.htm, downloaded January 2008.
History of Epilepsy, "1494", http://www.epilepsy.com/epilepsy/history, downloaded 2008.
McKale, Donald M., "Hitler's Shadow War: The Holocaust and World War II", Cooper Square Press, 2002, 154.
IB Holocaust Project, "Euthanasia Programs for Adults", http://cghs.dade.k12.fl.us/holocaust/euthenasia.htm, downloaded January 2008.
USF Teacher's Guide to the Holocaust: Forced Sterilization, "Nazi Germany was not the first or only....", http://fcit.coedu.usf.edu/holocaust/PEOPLE/USHMMHAN.HTM, downloaded June 2008.
Epilepsy & Health, Legislation, United States, http://www.2betrhealth.com/Stigma.html, downloaded/updated June 2009.
Hunt, Morton, "The Story of Psychology", Anchor Books, 1993, 232
Georgetown University, Kennedy Institute of Ethics, High School Bioethics Curriculum Project, Chapt 2, http://highschoolbioethics.georgetown.edu/units/cases/unit4_2.html, downloaded/updated June 2009.
Ridley, Matt, "Genome", Perennial, 1999, 290.
WHO, Epilepsy: Social Consequences and Economic Aspects, "Legislation", http://www.who.int/mediacentre/factsheets/fs166/en/, downloaded January 2008.
*** Hoag Epilepsy Center, http://www.hoaghospital.org/epilepsy/Article-FastTrack.aspx, downloaded/updated July 2009.

SITES & ARTICLES ON THE BRAIN & EPILEPSY Temporal Lobe Epilepsy Epilepsy Patients Caught in Treatment Gap Are Not Getting State-of-the-Art Care National Geographic - The Brain

BOOKS ON EPILEPSY & TREATMENT OPTIONS Treating Epilepsy Naturally: a guide to alternative & adjunct therapies,(2002), Patricia A. Murphy - former vp of the Epilepsy Advocacy Council of Long Island (also diagnosed with epilepsy) Prescription for Nutritional Healing (3rd edition), Phillis A. Balch, CNC Complementary and Alternative Therapies for Epilepsy (2005), editors: Orrin Devinsky-MD, Steven Schachter-MD, Steven Pacia-MD

SITES ON EPILEPSY & TREATMENT OPTIONS Epilepsy Newfoundland and Labrador eHow health - Complementary and Alternative Therapies Epilepsy Foundation of Western Pennsylvania some side-effects of anti-seizure drugs PeaceHealth

OTHER Seizures as an Effect of High Fructose Corn Syrup and Aspartame Effects of High Fructose Corn Syrup Through elimination diets, I was able to pinpoint the worst seizures (and the most) as following drinks or meals with aspartame and/or high fructose corn syrup as ingredients. (and the new version of Aspartame: Splenda; and the new name for High Fructose Corn Syrup: Corn Sugar) SUDEP: I learned about this after asking a doctor about several occurrences I started noting around 2004. They were so strange I thought I'd be told I was imagining them. Instead I was told about the possibility for my heart and lungs stopping suddenly as relates to my history with epilepsy. (I was, by the way, grateful to be told)