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| Cleveland Clinic in Black and White (Photo credit: Wikipedia) |
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| EEG shows abnormal activity in some types of seizure disorder, but may or may not display abnormal findings in PTE. (Photo credit: Wikipedia) |
When I first heard that option I freaked out a little. The idea of some doctor operating on your brain can be scary. So I firmly told family and friends that I wasn't about to let a bunch of know-it-all doctors play with my brain and screw me up even more. I even thought that hey having seizures all the time and never being able to drive wouldn't be so bad, but I was at point now where the battle was something I was having trouble keeping up with.
The added stress at work wasn't much of a help. I felt like I was in the wrong for working there while my epilepsy wasn't under control. The horrible nightmares I had at night where I would die, be tortured, or kill someone I cared about was another load of stress I really didn't need. The dreams were vivid and often had me worrying about them longer than I needed to. Simply put I was miserable and fighting to find happiness was taking a lot of my energy and I didn't think I had the strength to keep fighting with incompatible meds and having seizures that would take away hope.
So I told my mother that I was considering the surgery the Dr. had mentioned and my mom asked the Epilepsy Center for information about the surgeries. We were given a very detailed packet about what goes on. I thought about looking through the information, but I already knew what my decision was going to be. I was going to tell my Dr. I was ready to be tested for surgery. I was afraid that the contents of the packet would change my mind so I never opened it. I didn't want to know.
The appointments leading up to my week long stay at Cleveland Clinic are a bit of haze because I was trying to block out the information given to me. I just wanted to show up and let them do what they needed to do to fix me.
The current meds I was on seemed at the time to be controlling the seizures, but the side effects were hard to deal with. The meds actually hindered my ability to communicate with people and absorb information. For example if someone asked my opinion of a movie I recently saw I was unable to tell them my opinion I wasn't able to find the words to describe it verbally. So I would usually respond with generic answers like Good or see for yourself. The only way I was able to communicate like normal was in my writing. My parents described it like I was two different people. One had trouble communicating and the other was excellent at communicating and putting fresh images into your mind.
This wasn't the only draw back of the meds either. If the Rx would give me a generic brand I would seize. Or if I took a pill a little late or dropped a pill while taking them without realizing I would seize. So the meds offered an illusion of control that I didn't really have.
So when I did check in for my stay at Cleveland Clinic I knew that I wouldn't be taking my meds for the week and that I would be hooked up at all times to an EEG machine so that they could record my seizure and be able to tell how to best help me and to determine if I could have surgery.
Most of the stay was a blur Mostly because of the seizures I had there make it nearly impossible to remember the stay. I mostly remember some really bad food and my mother who stayed with me having to go get me some decent food. I remember them giving me a drug to temporarily stop any seizures while they ran a test of some sort, but the reaction I had to that medicine was not a good one and I don't remember it to well. The drug they gave me made everything move and wave at me. This includes the pizza they served me to the walls, ceiling, and my own skin. Imagine little things with smiley faces suddenly rising out of your skin and waving at you. I was freaked out and just decided to sleep it off. That really is all I remember of my stay.
When all was said and done I found out that I was not eligible for surgery. That they were about 90 percent sure that I had generalized epilepsy and that I had been trying medicines for the wrong kind of seizures and they changed my meds that continue to work today. There was a small chance that I have a harder to spot focalized epilepsy that spreads throughout the brain so fast that it appears to be generalized. They decided not to do more tests unless the meds I'm on were to fail for some reason.
Although I don't remember much about my stay. Cleveland Clinic marks the point of a turning point in my life. After that I slowly regained control of my life and that would not have happened if I hadn't gone. My one regret is that I was so stubborn for so long. The whole mess could have ended sooner if I had just asked for the necessary help.
