I want to apologize for not posting my reply sooner. Saturdays are when I spend most of the day with my parents in order to do routine shopping along with every once in a while helping them around their house. We just exchange favors with one another. This past Friday, I was working on posting replies on this support group, but kept getting stuck in the Internet’s ever famous "Page Not Found”.
I want to thank everyone who has welcomed me to the CWE. I've been around the epilepsy block many times, but it's more like being in "Epilepsy World" or “Epilepsy Land”, or maybe on "Epilepsy Island". Heck, here's one for ya. When I was in the Navy I was stationed on board an aircraft carrier (USS Saratoga CV 60), so maybe after that, I've ended up being on board the 'USS Seizure Disorder' or 'USS Epilepsy'. I first started experiencing weird, unusual, and hard to describe feeling way back in February 1987, which was roughly just 1 month after being stationed on board that aircraft carrier. Back then, I didn't know anything about seizures (szs) or epilepsy (ep), but since I already knew what it’s like to be lightly being shocked by electricity, I called those feelings “jolts”. Then when I had learned about szs and ep, I realized that those weird, unusual, and hard to describe feelings were simple partial seizures (sps). Ever since then I’ve experienced sps pretty much every day. The strength and frequency of those sps have been anywhere from just 1 sps by itself that I can barely even notice; all the way up to a daily cluster of sps that starts off with "WHAM!", as if I just hit the funny bone in my elbow. Those sps will repeat themselves one after the other with the strength of the seizures slowly fading away.
The very first tonic clonic (t/c) sz I had was back in July 1994. The doctor I was seeing way back then prescribe some anti-epileptic medication (AED), which resulted in to me not having any more t/c szs until in March 1996, another in the following April, and then another 3 on the same day of May 28, 1996. The doctor back then started me on the medication merry-go-round, which eventually resulted in to those t/c szs becoming under control. However, around that same time is when I started experiencing complex partial seizures (cps). I am currently taking Lamictal and Keppra twice a day. I have been on Dilantin, Divalproex (which is an extended release of Depakote), Phenobarbital, Tegretol, and Neurontin. I’ve been through a few general EEGs; MRI’s, a CT scan, 3 separate 24 hour video monitored EEGs (VEEG), the third/last of which was a presurgical EEG (electrode strips and grids), brain mapping, and WADA test. The results of that presurgical EEG showed too high of a risk of permanently losing my ability to speak. By the way, I’ve medically been diagnosed with having Temporal Lobe Epilepsy (TLE), due to an underdeveloped blood vessel in my left temporal lobe, but by reading information online, think I have abdominal epilepsy. For multiple reasons, I have no intention of having the VNS installed into my body.
The worst experience I’ve gone through, due to having epilepsy, was being forced to leave a church that I had been a member of for nearly 6 years, and this took place shortly after one of my re-occurring complex partial seizures had finally taken place inside the church. When a person has this particular type of seizure, the individual will most likely repeat the same movements, such as doing a variety of things with their hands, like picking at their clothing or moving papers around on a desk or table. Each one of these different movements is called an automatism. My parents and a few neighbors who’ve seen me having complex partial seizures have told me that I’m usually making some humming noises, or turning the upper portion of my body towards my left side, and or moving my right hand in the area below my belt. So for whatever I did when I had that one complex partial seizure inside that church, it apparently scared enough people in order for the church leaders to make up some downright excuses just to permanently force me out of that church, back in December 2001. I now consider that church being a “Church of Chickens”.
For many years now, I’ve been to multiple epilepsy conferences, and to me, the best is called the S.E.E. Program. S.E.E. stands for Seizure & Epilepsy Education. The first SEE Program I attended, was a 2-day presentation, that took place in Houston, TX, back in November 2004; and the second SEE Program I attended, was a 3-day presentation, took place last year in Dallas, Texas. The individual who created and does this presentation is a neuropsychologist, explains the details in a matter so easy, that even people with epilepsy, like myself, can understand it. And guess what? There is a special 1-day SEE Program presentation that’s going to take place on Saturday, August 23 of this year, in Lubbock, Texas. For more information about this upcoming presentation, please visit the website of …
theseeprogram.com/html/lubbock__tx.html
Here are some thoughts that I’d like to share with everyone who reads this reply. In several of my previous postings and replies on other epilepsy support groups, I’ve said that “Knowledge is Power; but it takes Awareness, Communication, Support, and Understanding in order to build up that Knowledge.” I don’t care if somebody wants to call me an epileptic. To me, it doesn’t matter what other people say when they want to make fun of people who have epilepsy, because the stigma that’s being thrown at us are coming from people who want to be “the center of attention”. Just because stigma is being thrown at us, does not mean we have to catch it. Because, if someone catches the stigma that’s being thrown at them, then the person who threw it has become successful with what they were trying to do. And they’ll continue throwing more and more stigma, however many times necessary so they can continue to be “the center of attention”.
