My letter to the Epileptic Dr.

July 7, 2009

Hello Dr. ----,

Please find attached a DVD of my episode on Friday, July 3rd. I do not remember most of the first half so I will tell you what my cousin told me. (She was with me). What I do remember is how it started. I was folding clothes in my room and started to feel hot (which I’m always cold) I turned the fan on which I could not feel, so I turned it up more and directed it on me. Still I could not feel the fan. I had finished folding the clothes and took a shower, I felt a bit drained. I went back to my room with my robe on to blow dry my hair. As I was drying my hair, I did not feel well. My insides felt, I can’t even explain how I felt. When I would section my hair I put the dryer down. When I put the dryer down, my right hand would curl up. I got frustrated and tried to straighten my hand out. Kept telling myself I was fine. I only used two words “I’m fine” at the time I didn’t realize my speech was impaired. I continued to dry my hair and tried to ignore it, but every time I put the dryer down the same thing would happen. I then knew I was going to seizure. I still continued to dry my hair, trying to deny it. I was using the mirror to dry my hair and noticed that my left hand was constantly picking up the top of my hair very fast as I was drying it. I stopped and knew to call my cousin (who was already on her way to my house). I called her and told her I was not feeling well (not knowing my speech was hesitant, slow, missing words, repeating myself a lot and slurring) My cousin was a few exits away. I hung up and then called her a couple minutes after because the sensation was getting worse. Again I thought I was speaking normal, but I was not. I told her that I was worse and that I was going to unlock all the doors now, because I didn’t think I was going to make it and pass out by the time she got there and that I was going to lay down on the couch. I felt my insides shaking and the feeling of no control of my body coming. I called a friend thinking she was in the neighborhood so I would not be alone as I felt the feeling coming on stronger. No answer so I called someone else. It was hard to make the calls but I finally did it. As I was speaking to my friend I realized my speech was not normal. As hard as I tried to speak normal it came out as if I was slow. I started to get emotional because I had no control of my body and speech. I then received another call from another friend and they picked up my abnormal speech immediately and she was nervous and didn’t understand why I was speaking that way. I just got more frustrated as I lay on the couch unable to move. My cousin arrived and all I remember from that point on was her taking the phone from my hand and telling her that I could close my eyes now. The only reason I remember the 2nd half (which is on the DVD) is only because I had watched it over and over again. My cousin told me the following from the first half I do not remember:
When my eyes were closed they were moving around rapidly
I was in and out, I would not respond to her and then I would at times.
She also picked up from the phone call and from when she walked in that my speech was not normal. She had told me now, that it alarmed her and got her nervous.
My body was twisted and stiff laying on the couch.
My arms were limp though my hands were jerking.
I kept making noise with my mouth (which you hear on the DVD) like a snapping noise.
She also told me that I had asked her to move me to sit up, but it was hard for her because my body was stiff and twisted. I do remember it was hard for me to breathe at times. Also I remember getting pain in between my breast. My heart was not racing or anything like that. I just remember having a dull pain which only lasted about a minute or so.
I came out of it and told her about 10 mins. later that I felt it coming again and she told me that is when I had said for her to get the camera. She helped me lay down, which I do not remember The video is broken up in clips, we might have lost a few seconds in between. I do remember my head hurting from time to time and at one time I felt extremely dizzy. It started around 1pm and lasted until 3pm. I had gone to sleep about a half hour later and woke up with a tremendous headache that lasted through out the night into the next day. My muscles were weak and ached that night and the next three days. I still feel very drained and a bit out of it. I’ve also been feeling numb since I’ve been taking Trileptol on the right side of my face and head (the side of my surgery). Please let me know when you would like me to come into the office.
FYI – The video was taken in different angles, you will have to put your head sideways to watch some of it, I apologize, my cousin was under the control of my camera. You will have to play it on a computer for it will not play in a DVD player for the television. I apologize once again.

That is all I sent to the doctor. My cousin remember bits here and there and she had told me recently that I was crying through it. I do not recall this. The video is disturbing as my one friend Ann told me after watching it. It was hurtful to watch myself. It's starting to take a toll on me that I have accepted that I'm one of the people. One of the people who have a seizure disorder and that is one thing I have never imagined would happen to me. I try to stay positive and strong, but it starts to get frustrating when it doesn't stop and you have no control of your body. I'll stand up and keep my head up, because I know that I'm grateful just to be alive.