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Hello everyone! My name is Jenn, I'm 33 and live in Colorado. I live with my beautiful 13 year old daughter Lily and my parents. I have had epilepsy for 2.5 years after a car accident where my airbag didn't go off and even though we were in a relatively minor wreck (I was the only one hurt, my car and the other car honestly didn't have much damage to it but because of my airbag not going off yet passenger side did... it was um... can't get the word out... but we had to get a new car after that.) It really wasn't a bad wreck though. Someone pulled out in front of us and cut us off, I hit my head, and at first we thought I just had a concussion. I don't remember a lot of the wreck and I "came to" and Lily was screaming, our car was attached to the car in front of us and I was like "What the hell just happened?" But I got out and walked around and seemed fine at first. My daughter was fine. THANK GOD. I would rather be going through all this than her. The person in the other car was fine, which I'm glad for too.
We just thought I had a concussion, and all seemed well.
But then a week later things really started to get bad. I was driving with my Mom on the highway and I "came to," and was staring at my Mom... our car was pulled to the side of the road, thrown into park. My Mom was staring at me and saying "Weazie, Weazie.... do you know what just happened?" (My family nickname is Weazie because of my asthma) I just shook my head no... I had no idea what had happened. Apparently I was driving and my Mom said I didn't answer her... she looked at me and I was just staring straight forward, not moving, not talking. She was screaming my name and she grabbed the wheel of the car, pull us off to the side and then had to throw it into park. I said "I don't remember any of this, I don't know what is going on...." with her explaining what I did I said it sounded like how the students acted when they had absence seizures when I would teach middle and high school. We immediately get me into the doctors and I had a 3 hour test to see if they could try to get me to have seizures. I left the test feeling fine... I didnt think anything happened!
But then we see my doctor a few days later and we were told the news... I was having seizures. That's when I started having more and more. No convulsive seizures, but petit mal seizures where I do the pill rolling, talk nonsense, drool, I've started to pee, pace back and forth, throw things... just generally act weird where if you didnt know it was me having a seizure.... you may think I was a drunk or overly emotional person (sometimes I just laugh hysterically or cry).
We have tried 12 or 13 different medications and nothing has helped. The 2 Im on now... lyrica and topamax... are what has helped me the most but still I seize. I had a recent 5 day hospital stay to see if I was a candidate for RNS or VNS surgery. The first 5 day hospital stay I had, it was a hard time getting me to have enough seizures. This time they almost gave me medicine to STOP having so many seizures, I had 7 within 24 hours. I had 9 within the 72 hours of not being on my medicine, but I still have at least one seizure every 4 days on general average even on my medicine.
So now we are taking the step to get the RNS. I am getting my hysterectomy first.... and then go and get the RNS done. I hate how my seizures mess with my life, I want the RNS first but my neurologist thinks I should get my hysterectomy first. So it will be lots of surgeries coming up but I hope it changes my life and fixes me. At least helps a lot more, ya know?
Got any questions you guys would like answered?
We just thought I had a concussion, and all seemed well.
But then a week later things really started to get bad. I was driving with my Mom on the highway and I "came to," and was staring at my Mom... our car was pulled to the side of the road, thrown into park. My Mom was staring at me and saying "Weazie, Weazie.... do you know what just happened?" (My family nickname is Weazie because of my asthma) I just shook my head no... I had no idea what had happened. Apparently I was driving and my Mom said I didn't answer her... she looked at me and I was just staring straight forward, not moving, not talking. She was screaming my name and she grabbed the wheel of the car, pull us off to the side and then had to throw it into park. I said "I don't remember any of this, I don't know what is going on...." with her explaining what I did I said it sounded like how the students acted when they had absence seizures when I would teach middle and high school. We immediately get me into the doctors and I had a 3 hour test to see if they could try to get me to have seizures. I left the test feeling fine... I didnt think anything happened!
But then we see my doctor a few days later and we were told the news... I was having seizures. That's when I started having more and more. No convulsive seizures, but petit mal seizures where I do the pill rolling, talk nonsense, drool, I've started to pee, pace back and forth, throw things... just generally act weird where if you didnt know it was me having a seizure.... you may think I was a drunk or overly emotional person (sometimes I just laugh hysterically or cry).
We have tried 12 or 13 different medications and nothing has helped. The 2 Im on now... lyrica and topamax... are what has helped me the most but still I seize. I had a recent 5 day hospital stay to see if I was a candidate for RNS or VNS surgery. The first 5 day hospital stay I had, it was a hard time getting me to have enough seizures. This time they almost gave me medicine to STOP having so many seizures, I had 7 within 24 hours. I had 9 within the 72 hours of not being on my medicine, but I still have at least one seizure every 4 days on general average even on my medicine.
So now we are taking the step to get the RNS. I am getting my hysterectomy first.... and then go and get the RNS done. I hate how my seizures mess with my life, I want the RNS first but my neurologist thinks I should get my hysterectomy first. So it will be lots of surgeries coming up but I hope it changes my life and fixes me. At least helps a lot more, ya know?
Got any questions you guys would like answered?
