I am 22 years old, I have lots of medical conditions, most chronic being my low to mid back pain, that no one can seem to find a reason for. I was diagnosed with psychogenic nonepiletic seizure disorder, along with conversion disorder ( now just finding out that the term for this is “CD” ) in April of 2011 but my symptoms started in September or October of 2010. I started having the shaking of my entire body for no reason. I was able to explain some of what was going on, but not the entire situation. I was lucky living with my mom, and my two younger 16 year old brothers at the time, both of the boys were able to lay their weight across me to try to hold me down so I wouldn’t get too out of control. I was diagnosed by two EEG’s and a CCTVEEG (closed circuit television EEG).
OHSU Epilepsy clinic did the study. My mom was able to stay in the room with me, for the few days I was on camera 24/7. When the doctor did come in and said that I didn’t have epileptic seizures, I took a sigh of relief. Being that my mom, my grandma, her best friend grandma Chris, my Grandpa (who is divorced from my grandma and remarried) and his new wife was in there, it was hard to hear the next thing that came out of his mouth. “Have you ever been sexually molested, or abused in any way that you can remember?” He asked. “You have something called psychogenic nonepiletic seizure disorder, along with conversion disorder” He said. I said “No not that I can remember”. He said that at most of all the cases he had seen in his experience the patient has been sexually abused in some way. “The best way treatment for this is counseling, and to see a mental help specialist.” With that 10 minute conversation, my entire life was changed.
Moving on, I live a pretty stressful life, having so many doctors appointments, having so many different medical problems, just everyday life stress can cause a whole new kind of seizure, and I am not the only one in my family that has medical problems. The one thing you don’t want when you have conversion disorder – stress in ANY WAY SHAPE OR FORM, not that ANYONE can have that kind of life, unless you’re a Monk. They seem to live pretty calm serene lives.
I have been doing my research on these disorders, and it seems that FINALLY I can see that SOMEONE UNDERSTANDS EXACTLY what I am going through/How I am feeling COMPLETELY. The fact, that I cannot control the seizures AT ALL. Is like the fact that NO ONE can control a exploding can of pop, that’s how we feel in seizure mode. Which is kind of feeling that way all the time, because we feel out of control all of the time.
With Conversion Disorder, I can be sitting here talking to you, (or anybody) being completely of sound mind, and then all of a sudden, I will forget what I am saying, what you were saying, and I’ll either break out shaking, or have something that would look like a convulsion once every 30 or so seconds. I try really hard, more in front of people I don’t know to hold it back, which only causes more pain for me, and it seems to make the seizure worse. Sometimes I’ll be sitting in the car, singing to the radio, totally okay, then I’ll just have a muscle jerk, or at least that’s what my mom calls them. That is another sign I am a going to have a seizure.
I sometimes can catch them fast enough, mostly anti anxiety medicine is something that I have to take to get them to go away. Sometimes, I end up in the emergency room just so they can give me something by shot to make the seizure go away. Those are only when the seizure is really, really bad. Or the seizure has lasted over 8 to 10 hours. Sometimes I will try to go to sleep, and I end up having seizures in my sleep. Also, I go to bed in a seizure and then I wake up in one. (Just sitting here writing this is making me anxious, it’s hard to write about something that’s so hard to explain to someone who hasn’t experienced it.)
My life is totally different now. It was before I started having these. I also have medical problems like PCOS, PsuedoTumor Cerebri, Chronic mid to low back pain, Fibromyalgia, Chronic irritable bowel syndrome (what a lovely conversation starter), Ataxia (makes me fall anywhere at anytime), Migraine headaches, depression, PTSD, Anxiety/panic disorder and more, I just can’t quite think of them right now.
I’m on a variety of medications. Some make me really tired, so I have to take them at night, the ones I have to take during the day, make me have to take naps.
I have lost friends, gained friends, and lost them again. No one “friend” can understand the stress it puts me under when they are fighting with me, or just arguing even. I tend to have lots of seizures when I am arguing with someone. My mom sees it first hand, and my brothers also.
To be left alone, is to pretty much be laying down, not moving around much just in case I fall and knock myself out. I’m not left alone much. I spend most of my time with my mom, or my brothers, like I said I don’t get left alone much.
My Mom has been there for me through this whole thing thick and thin. If it wasn’t for her, I don’t know what would’ve happened to me, or happen to me now. I thank god for my mom, my brothers, my grandma, and my grandpa Dean everyday. They are my rocks that I lean on. And if I didn’t have them, who knows what would happen to me. I also have extended family, like my aunt Betsy, uncle Butch, my grandma Christine. I just want you all to know how much I love and appreciate you. Even when I don’t show it.
Anyways, this is my story. I am hoping that I can find more people going through the same thing as me. Or just find some pen pals to have someone to talk to, who understands.