It's Getting Old.

Hello my friends,

It's 3:04am.... Wait, wait, wait. This sounds familiar. These blogs are all starting to sound the same! Things are getting a little old around here with my insomnia, aren't they? Oh well, nothing I can do about it but press on. Right?

Today wasn't the best day. I woke up for work at 6:00am, took a shower (Oh God, why would I shower?! That's only the one place I have most of my seizures!) and ended up having a seizure, falling down and hitting my head against the tile. Nothing new, as this has become an almost everyday thing for me for the past few years. Well, minus the hitting my head on the tile part. That has only happened a select few times. At least there was no blood this morning.

I had to call into work. My manager didn't sound at all convinced that I was serious about having a seizure. People never seem to be convinced anymore... Even my family. It's like all I hear is "Don't tell me that crap." or "It's just an excuse." I cannot stand it. Do I need to fall naked in front of them again, convulsing and bleeding from the mouth for them to see that this is still very real? As a matter of fact, didn't that very thing I just mentioned happen only a month and a half ago?

I met with Dr. Szabo yesterday and we lowered the levels of my Vagus Nerve Stimulator implant by two notches. We're not sure if my brain was more comfortable with the level it was at a while back or not. My seizures have begun to go crazy as of a month or two ago, and that's when we took the stimulation up two notches. So my doctor is basically trying to take me back to where I was and see if I'll be okay again. Back when I thought that I would finally be able to get off of my medication. But judging from the incident this morning, I'm not sure if that's going to happen.

We talked about getting my temporal lobe or even both my left temporal and occipital lobe removed. So surgery is back on the table and no one is stopping me from getting it. I've about had it with medication, and I'm starting to completely regret having the VNS implanted. I believe that my only purpose for receiving that implant was to simply be able to share my experiences with you all. I don't think it was the right treatment for me.

I've tried almost every medication out there except for Sabril. It sounded promising to take at first, but the fact that my peripheral vision is already slowly going away, and vision loss runs in the family, I wont be giving Sabril a chance. It's far too expensive and the 25% chance of vision loss is not something I am fond of risking.

I've scheduled an EEG with video monitoring in about three weeks here. To sum that up, I'll basically be recording the electrical activity that occurs along the scalp of my head from my brain. I'll be taken off all of my medication, and I will be FORCED to play video games, play with my cell phone, work on the computer, and stare at flashing lights until about three seizures occur. This way, doctors can pin-point the area where most of my seizure activity comes from.

It sounds violent, and I wont lie - it might as well be a crime to do this to people. Unfortunately, it's the only way to help a person with Epilepsy. But don't worry, I will be blogging as much as I can during my hospital stay and I'm sure my mother will be right next to me with a camera taking embarrassing pictures of me after my seizure like she always does. I still don't know why she finds that okay to do, but maybe if they aren't too bad, I'll share one with you all.

After the EEG I will most likely have to repeat my Wada test or ISAP test, named after Canadian neurologist and epileptologist Juhn Atsushi Wada. It is an "intracarotid sodium amobarbital procedure" used to establish cerebral language and memory of each hemisphere in the brain. It's quite fun actually... aside from all the pain in which I am practically immune to now. They make an incision in my groin and insert a pretty thick catheter into my artery and release a barbiturate into my brain, one hemisphere at a time.

No pain killers can be given, since they affect the way your brain works, so pain is something that you have to deal with. A local can be given, but it only helps that first layer of skin from feeling any pain. It does not get rid of the pain that comes along with pushing the catheter up through your body until it reaches your neck. They claim you should feel no pain, but I was on the verge of tears during my last Wada test. So it's all a lie!

The fun part is after the barbiturate has been released. Your eyes feel like they are being pressed on for a few seconds, and then the doctors try to see if you can read, recognize objects, talk, etc. After the drug has worn off, they see how much you can recall. It's a lengthy process and quite painful, but it's amazing to go through it all and get to experience these crazy things.

I remember the entire time I went through my Wada test I got to stare up at about 20 screens above me, all showing different angles and views of my brain. It was practically a live MRI/X-Ray. Totally awesome to see. I'm hoping to get a recording this time so I can share it with all of you. It's really up to the doctors though. Hopefully, if I do get a recording, no one cracks a joke about losing their wedding ring in my groin. That was totally not funny!

I know this blog sounds very negative, but these things aren't exactly pleasant to talk about. I assure you, though, I have a positive attitude about all of this. I'm hoping to still be a surgery candidate and get these pieces of my brain taken out as fast as possible. I want to be seizure free so I can further continue my advocacy without these pauses that many of you notice. I no longer want to say "Sorry folks, my blog posts will be delayed for a week or two due to some seizure activity".

Until then, I'll make due. Please stay tuned for more Epilepsy, A Love Story pieces and be sure to check out the following pages... and my CONTEST which will be running for the next week. The prize isn't HUGE - only a $15 Amazon.com gift card and two FREE RedBox movies. But it's just a kick-off contest for some of the bigger ones that I have coming soon! This contest requires no purchase or any of that wacky "apply for a credit card" crap. It's a simple sign up, and all it takes is some quick participation and you're entered! Even better, you can enter each day!

To enter the contest, please see my CONTESTS page!

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