[urian]

I hate my epilepsy. Mind you I guess I'm lucky because I've never had a Gran Maul seizure (mine manifest as headaches mostly) but it doesn’t change the fact that I've been fucking crippled by god's bad joke.

A car hit me when I was 12. There was no real damage done except for a severe concussion. I was happy I hadn’t been killed or crippled so I chalked it up as a really screwed up childhood thing and went about my business.
A year later, when puberty poked it's head out, I had an episode at my house that screwed the crap out of my brothers (both younger). My mother rushed home from work to find me in the fetal position screaming, crying and holding my head.
Over the ensuing months I had half a dozen eegs and 3 MRI's done (along with a myriad of other tests) to try to figure out exactly what was wrong. I honestly believe that the Docs didn’t believe I had anything wrong with me. Well, ok, nothing they could identify. It wasn’t until a nurse came in and started asking questions (after months of tests) that the diagnosis of epilepsy was given and that was only because the nurse happened to have the exact same symptoms that I exhibited (she’s one of the only other people I know that has a similar form).
Well, the docs did what they do best. They gave me drugs (dilantin) and shoved me out the door. NO real explanation to my family or me as to what was wrong with me. Every week for the next 6 years I was at the hospital giving blood or taking testing to check my liver and other organs to make sure the drugs didn’t have an adverse affect on me.
During that time I was a teen in junior high and high school. I hid my epilepsy from everyone I knew because the few people that found out about it always acted like I was some leper or Typhoid Mary. They acted like I could give them epilepsy or that I was mentally retard or ill. One school counselor referred to me as a "special" student and tried putting me in special education classes because of my seizures. After an IQ test and an apology from her (reluctantly) I went about my business and transferred schools shortly afterward.
The Dilantin never really stopped my epilepsy. It just slowed it down from have a large seizure every week or day to maybe every month or so. The doctors insisted that I stay on my meds but I took myself off in an attempt to try to live a normal life and because I was sick and tired of hospitals, tests and doctors.

I think I need to explain my epilepsy for a second (or at least I feel I need to). I'll start with a good day. See, I have an ongoing headache from the time I wake up until I go to sleep (been that way since the first time). The last EEG I had showed that I average about 3 severe seizures and hour...you do the math. Anyway...on a good day my mind is similar to a TV that is on a station that is not QUITE clear. There's a little white noise, sometimes you can’t tell what’s being said, you can’t follow anything unless you really concentrate and sometimes other channels pop in and out. Sucks to high heaven.
ON a bad day imagine complete white noise and sensory overload. I can look at a book, recognize the words but I can't "read" them, erratic though patterns & that’s the good end of a bad day. Mostly it’s a complete shut down of my system. Light causes unbearable pain, any sound seems amplified to the Nth degree, touches (even air) feels like my skin's being sandblasted and I usually pass out from the pain.

I was off meds for years until around 2001 when things started happening. Mind you I the seizures never stopped but now I had mild, jerking seizures while I slept, I would drop things without realizing I had and other muscle twitches. MY memory starting going to the point that I would forget what I was saying while I was saying it or I'd forget where I was going midstride.
This bothered me so, after I visited my doctor, I saw a neurologist who put me on depakote...dear god I felt like dying on those meds so I asked him for different (less harmful) meds so he gave me topomax and told me that almost no one had reactions to that. Well, I was the almost no one. That medicine was evil in a capsule. At the time he told me there were no other meds and the only other alternative would be to take an ice cream scoop after the "infected" area. No thanks, and I haven’t been back to a doc since.
I try to control everything by watching my diet, keeping stress low, and trying to ignore the pain as much as possible.
It has been on of the most isolating things I have ever come across because I have only met a handful of people that admitted to having epilepsy but on two others that had a form similar to mine. It's also very difficult for the loved ones in my life to cope and understand.
OTFW has been with me for some of the worst one of my episodes and she tries so hard to understand but I know there have been times where she doubted the pain or what I was going through and I don’t blame her for that because, if I was on her end, I'd be tempted to do the same thing. But she tries which is more than what some people in my life have done.
There have, honestly, been a few times in recent memory that I have contemplated the ice cream scoop but the side effects are almost worse than the disease. Partial to severe memory loss, partial to severe personality change, intellectual effects, etc.
I don’t know


Look...I don’t expect any "poor baby's" or poor you or any sympathy. I just felt like whining about the one thing in my life I can’t change without changing myself.
Just felt like venting and bitching.