freckleface19
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Hi! I'm not new to seizures, but I am new to this support group. Here's my story
When I was 12 years old, I started having auras. My auras are complicated. I call them "colors". They only happen when I stand up from lying or sitting down, but it doesn't have anything to do with blood rushing from my head. My vision will be completely covered with flashing multi colors, my whole body will go stiff and numb starting in my legs, I will get the pins and needles feeling, my whole body will throb, I will get an extreme headache, and afterwards, I feel completely normal. I am completely aware during it, but I will feel confused after. So I had these auras for 6 months before I had an actual seizure in July of 2006 (I had a few fainting spells before), and I was completely aware during it. The only thing they found was that my right temporal lobe is smaller than my left lobe, and there's a scar on my right lobe where the activity is coming from. I was put on Tegretol for about a year before it lowered my WBC count, I got an infection and had to have surgery. They then moved me to Lamictal which I stayed on for another 3 years and only had one breakthrough seizure. They are unsure exactly what kind of seizures I have. It seems that I have characteristics of several different kinds. I will have an aura, faint, and my entire upper body will convulse, but I'm completely aware of what's happening. In 2010, I had another EEG, and it came back normal, so I was taken off my meds, believing that I had outgrown the seizures. About a year ago, my auras starting coming back slowly. Over the past year, I've noticed that my auras will be more frequent and stronger when I'm stressed and right before I start aunt flow. The stronger the auras are, the more painful it is. Last week, I fainted again, but I'm not sure if I had a seizure or not, because I was alone. I had an EEG, and the doctor just told me yesterday that it came back abnormal. So I'm going to go back in soon hopefully and get all the details worked out so I can get back on meds. This all happened exactly 3 years after I was taken off meds. How convenient lol. Still unsure of the cause.
So I'm basically here because I don't know of anybody who has seizures/epilepsy. I've explained all this to my friends, but obviously they can't relate. They've made fun of people with seizures, not specifically me, but I still find it insulting. It's one thing to make fun of it and think that you know what it's like, but you don't know til you have a seizure or have to take daily meds. I think it'd be nice to relate to some people who are going through the same thing I am I'm 19 by the way!
When I was 12 years old, I started having auras. My auras are complicated. I call them "colors". They only happen when I stand up from lying or sitting down, but it doesn't have anything to do with blood rushing from my head. My vision will be completely covered with flashing multi colors, my whole body will go stiff and numb starting in my legs, I will get the pins and needles feeling, my whole body will throb, I will get an extreme headache, and afterwards, I feel completely normal. I am completely aware during it, but I will feel confused after. So I had these auras for 6 months before I had an actual seizure in July of 2006 (I had a few fainting spells before), and I was completely aware during it. The only thing they found was that my right temporal lobe is smaller than my left lobe, and there's a scar on my right lobe where the activity is coming from. I was put on Tegretol for about a year before it lowered my WBC count, I got an infection and had to have surgery. They then moved me to Lamictal which I stayed on for another 3 years and only had one breakthrough seizure. They are unsure exactly what kind of seizures I have. It seems that I have characteristics of several different kinds. I will have an aura, faint, and my entire upper body will convulse, but I'm completely aware of what's happening. In 2010, I had another EEG, and it came back normal, so I was taken off my meds, believing that I had outgrown the seizures. About a year ago, my auras starting coming back slowly. Over the past year, I've noticed that my auras will be more frequent and stronger when I'm stressed and right before I start aunt flow. The stronger the auras are, the more painful it is. Last week, I fainted again, but I'm not sure if I had a seizure or not, because I was alone. I had an EEG, and the doctor just told me yesterday that it came back abnormal. So I'm going to go back in soon hopefully and get all the details worked out so I can get back on meds. This all happened exactly 3 years after I was taken off meds. How convenient lol. Still unsure of the cause.
So I'm basically here because I don't know of anybody who has seizures/epilepsy. I've explained all this to my friends, but obviously they can't relate. They've made fun of people with seizures, not specifically me, but I still find it insulting. It's one thing to make fun of it and think that you know what it's like, but you don't know til you have a seizure or have to take daily meds. I think it'd be nice to relate to some people who are going through the same thing I am
I'm 19 by the way!
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we're not all old fogies either, there are plenty of younger people on here as well.