Out of the Hospital Update

I came home from the hospital yesterday. Luckily for me, my body is easy to torture, and I passed out the first night I was in the hospital. I had to stay until yesterday morning to talk with the doctor though. So I did and they sent me home. I needed some time to process everything I was told, and I could probably still use some time. However, for the sake of my friends that have been on pins and needles, here is my "new" diagnosis:

First of all, I am still diagnosed with Dysautonomia. You can see my explanation of all that here. I was in the hospital doing this study because doctors, family, and friends were all starting to believe that there was something else going on. Mainly, everyone was worried about seizures. So I went in for this study to try to find some answers. My answer is that I do have seizures.

There are two main types of seizures, from what I understand. There are epileptic seizures and non-epileptic seizures. After my passing out Tuesday night, my neurologist was able to confirm that my seizures are non-epileptic. I did not show any of the epilepsy brain abnormalities.

This means that my seizures are non-epileptic, specifically Psychogenic Non-Epileptic Seizures (PNES). These manifest in much the same way as epileptic seizures- loss of consciousness, strange movements, etc. However, their causes are different. PNES is caused by psychological stress. Since all of this started in April 2012, I have said again and again that stress was not a cause because I was rarely stressed when they happened. I would be in church, in creative ministries practice, with my friends, in class (ok, that one might be stressful at times). But my point is that I was happy.

Ironically, that is exactly how PNES typically shows up. The way my doctor described is that my body would not let itself handles stress well during the actual stressful situation. It buried my stress deep inside, and that stress manifests when I am calm, when I am happy. In other words, I have something along the same lines as Post Traumatic Stress Disorder (PTSD). Most likely, this is the result of my high school experience, which I briefly talk about here.

During the worst part of high school I passed out and landed on a very hard floor after bouncing off some furniture on the way down. I got a pretty bad concussion from that incident. That concussion kept me out of school the majority of my senior year second semester because I was so sick. I have dealt with the effects of that concussion since then. It is also playing into my PNES now, in the opinion of my neurologist.

These are the two main culprits behind my PNES now, but there may be more stress buried in my body that I don't even realize, according to my readings.

There really isn't any treatment for PNES because of how little doctors really know about it. However, 30-40% of people with seizures have the PNES type. I am actually participating in a study at UAB this summer, to try to help them learn more.

PNES is ideally dealt with by both a psychologist and a neurologist. I am struggling to come to terms with the fact that I might need psychological help again. I don't want to need that help. I feel like people are going to think I'm crazy, that I'm just making it up or overreacting or whatever else. But I'm not. My doctor made it a very clear point to make me understand that I am not crazy and there is still nothing I can do to prevent an episode from happening. Although it is non-epileptic, my body still takes over. From my perspective- it is the same as an epileptic seizure. I have completely lost control over my body when this happens.

So as I try to move forward and make sense of all this, please understand that I'm not just crazy. Please don't treat me like I am. I don't know whats going to happen. I was certainly not prepared to be diagnosed with a psychological problem when I checked into the seizure study. I'm still not used to the idea, but so many people were wondering what exactly happened.

In the EMU...Day 1

Contrary to my sister's first impression, I am not currently in an actual emu. I am in the Epilepsy Monitoring Unit at UAB. My sister keeps asking me about the large bird though.

Today is day 1 of my seizure study. I was told to come and expect a 2-5 days stay. So here's what's happened so far-

• I have 23 electrodes glued to my head. Yes, glued. And they pulled me skin tight while they were gluing the electrodes on so I can't move my face either. If you know me at all, you know I hate having all this crap on my head and in my hair. 
• I am on a sleep deprivation plan. They will keep me awake until 4am, and then wake me again at 7am. Who volunteers to stay up and talk to me until 4am??? 
• They truly are planning to torture me into an episode with flashing lights and making me hyperventilate and such as that.
• I am being constantly watched. Constantly- there's a camera in my room. 
• I had to explain freckles to my doctor. "No, I wasn't born with them. No, they don't go away. No, they don't itch." Really? A doctor doesn't know what a freckle is? I am not feeling very confident.

I'm really quite bored. I'm just sitting here waiting to pass out. Mom's here with me, and my sister visited me today. 

So yeah, it's not terribly fun here, and I would really love to pass out pronto and GO HOME!!! Pray for that pretty please!!!!!