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I have had seizures since I was young, and I'm nearly 50 now.

Mon, 07/07/2014 - 20:31

I can remember (since 2nd or 3rd grade) in elementary school waking up in the nurse's office,with my eyeglasses (which I didn't start wearing until the 4th or 5th grade) usually broken and a sore lower back. My parents didn't tell me that I had epilepsy, and I didn't start taking medication (first Phenobarbitol, then Dilantin) until my early 'pre-teen' years. When I turned 17 and moved out, I stopped taking my meds and seeing doctors. Doctor visits, blood tests, and EEG's were making me have seizures. The blood draws and EEG's were the worst, although going to a doctor and the constant reminder of my condition wasn't all that great.. Since 30 years ago more blood was needed to measure med levels, and my EEG's required me to be strapped into a hospital bed with a giant strobe light stuck in my face and 'strobed' to enduce seizures was certainly not even close to my LEAST favorite thing. It got to the point where just having the EEG probes stuck into my head would be enough to cause me to seize. Besides, there was no way I could've afforded those treatments myself, so that made the decision easier to make..

10 years and ~15 days ago I was mugged or something. I remember flashing my headlights and beeping my horn to a buddy of mine as he turned down his street
and 5 days later I woke up in a hospital. The doctors there said I was in a coma for 3 days. A few months after my release, my friends organized a benefit
event and the funds from that help me pay most of my medical bills. Who knew a ride in a helicopter cost so much?? Even with all the help from my friends,
my girlfriend and I had to move from that area, Southern Maryland, to where we are now, Southern West Virginia.

Until late last year, my seizures were very infrequent, usually months, sometimes a year or so apart. They have changed in other ways too. Not only did they
used to occur less often, but I would have more 'notification time' than I do now. Sometimes before, I could say to myself,
"I'm gonna have one in the next day or so", but usually it was just in minutes, sometimes in the 5-10 minute range. Now, this 'notification time' is non-existant
or very small, or I'm just not able to recognize them yet, and it has not prevented me from several hospital visits and more than several stitches in my head
due to passing out to close to a stone wall or something similar to that..

So if you've gotten this far, thanks for reading. Pretty much all I wanted to say is my reaction to something my girlfriend said to me last night.
Right off the bat, and hopefully before anyone starts making false assumptions: I have been with her for nearly 20 years. I love her VERY much, and I feel
she is the best thing that ever happened to me. So, back to this boring post, last night she said to me something along the lines of
"it's nothing to be embarassed about". I somewhat strongly replied, "I'm not embarrased about it at all. I am extremely P.. Offed about having this disorder."

Now, I've been seeing two doctors (a general physician? and a neurologist) for almost a year now. I'm currently prescribed both Dilantin and Phenobarbital.  
So the nine (two meds and a multi-vitamin) pills a day, along with the new medical technology, have definately made a difference. Today, EEGS only require
some kind of water-soluable paste for the electrodes, no strobe lights (just don't move your head, look out a window, close your eyes for awhile,
then open them for awhile), and much less blood (with way thinner needles) is required.

Thanks for reading all of this, I frequent only 3 other forums, which have absolutley nothing to do with epilepsy. While I do plan to visit here for at least
a short time period, I make not stick around for long. The 'reminder' thing you know..

Comments

The tests today are nothing

Submitted by just_joe on Tue, 2014-07-08 - 22:29
The tests today are nothing like those I went thru back in the 1960's and yes smaller needles. The MRI replaced the neuro-angeogram which was a pain in the ass since they took a spinal tap with it. Oh and pumping air into the head doesn't hurt until you are recovering in a room/ what ever you do don't move your head.. While the air is up there they take exrays from all angles. But they didn't find anything right away. The last test was another EEG. In that EEg I fell asleep and they found seizure activity in my left lobes. Knowing where that came from they looked closer and they found scared brain tissue.  The meds yo uare on I was on for many years and they did control my seizures. I actually was seizure free for 3+ years while taking them. I do hope they get your dosages set and you do get seizure free.

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