I was scheduled to have a 30 minute EEG and in that time frame they were going to do everything possible to cause a seizure. This way they can see what part of the brain is effected in order to figure out what was causing this. I was terrified that I may have a grand mal seizure so my friend Kara went with me and slept on the floor while I was having strobe lights flashed in my face. Nothing happened, no seizure, but I still had more tests to do and then see my Neurologist again.
Next on the menu was an MRI. For an MRI you are in a giant tube machine thingy and you have to stay completely still. You will hear very loud banging sounds but you still cannot move. They kept telling me to stop moving which did not make sense to me because I felt like I was as still as a pile of bricks. I was also paranoid that my metal fill-ins were going to be ripped out of my teeth because the MRI is a giant magnet. Thankfully that didn’t happen. My worst case scenario mind thought of everything I tell ya. Once again there was no doctor to review this with me so I’d have to wait to see the Neurologist.
After this I had a scheduled sleep study. This was terrible. You are in a room that resembles a hotel but there are cameras everywhere and microphones in the room. You have to go to sleep when they tell you to(you set the approximate time of course) and they turn off the t.v., all the lights, and your cell phone. NO CELL PHONE? How will I survive?
It is really difficult to sleep when you know that someone is watching your every move. I mean, what if I fart?
Generally I sleep like I am dead and I am not woken up easily. For whatever reason they tried to tell me that I had sleep apnea. I call BS on that one. They made me watch a video about it and not one thing that all of those people with sleep apnea described related to me. The only time I fall asleep is if I plan to. I don’t fall asleep watching t.v., driving my car, sitting down; I don’t even do a face plant into my cheerios in the morning. I go to sleep at a specific time with the intention of sleeping and at no point during the day to I fall asleep unintentionally. Sometimes I’m a bit sleepy but usually that is because my son woke up in the middle of the night for 2 hours. The sleep study was a waste of time. I kept having companies calling my phone trying to get my to buy some stupid machine mask to wear when I sleep and when I said no they acted like I was 2 seconds away from dying for not following through with the recommendation.
I’m very skeptical of all things in the world. If it involves sales than I don’t think I need it. You have to prove it to me. When I got to visit with the Neurologist he reviewed the tests and said that he could not determine anything definitive yet. Next step? A 48 hour EEG. Basically they strap your scalp full of electrodes attached to a 10 pound box that resembles a bomb and tell you to go about your normal life. Hello? I’ve got 50 multi colored wires coming from the top of my head held on with glue. I look like a nut case. I also had a button attached that I had to press anytime I felt the ‘feeling’ so they could look at my brain waves at that exact moment. I did what they said anyway. I even went to watch a Sweet Sixteen Basketball game at Lucas Oil Stadium in Indianapolis. Because, why not?
I pulled my own head tons of times because I would get up and forget that my head was attached to this box and it would jerk me backwards. Good times!
After this test they were able to diagnosis me with Epilepsy. I did not believe them. They put me on Keppra XR and said that was the only thing that would stop that feeling and there was no cure. I would have to meet with a neurologist on a regular basis but that was it. I did what they told me to do. The side effects of this medicine are insane.
The first month I was on the medication I thought I was losing my mind. I would wake up crying for no reason and not get out of bed. I would flip out and be angry at everyone. It was a hard month for me. My roommate was there and it was definitely good to have someone who cared. She had to take a lot in that time because we lived in a city where we didn’t really know anyone else. Special thanks to you Kara! This is far from the end of my story about having epilepsy.
Part three next time and that will wrap it up for now. Epilepsy is a life-long struggle so be sure to support and spread awareness!