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Simple Partial followed by Generalized Tonic Clonic-Sometimes
Sun, 11/28/2004 - 20:11Any input would be great I would love to talk to someone who may have had or has similar seizures.
When I was thirteen I was awakened one night by my left hand cramping and jerking uncontrollably, I remeber trying to scream for my dad but was unable to. It then progressed to what felt like an unbearable tightening of my left arm and moved on to my enitre body I guess the whole thing had a kind of hum to it "VVVVVVVV" and seemed very violent even though I didnt feel like I was shaking "Felt a bit like beeing torn apart maybe Like ever muscle I had was fighting with ever other muscle". I saw a flash of white and then red "I had many more after this but never saw any flashes of color again". I woke up on the floor if you would call it waking up I was unaware of where I was in fact even what I was (indescribable). When I had regained a bit of composer and attempted to move my arm (Near impossible) it was like slinging limp spaghetti with some jerking. From there I only remeber waking in the morning and not thinking much of beeing on the floor "I got dressed and walked to school".
Believe it or not I didn't remember any of this until a couple of weeks later. I had been having what I thought was just cramping in my left hand mainly my pinky and ring finger for a while before this (Not sure how long) and really thought nothing of it. When I remembered what had happened I was more afraid than I had ever been in my life (In fact it still scares the crap out of me today) I remembered it pretty well I think, and its still very vivid in my mind. After that they seemed to come on like a storm I had at least one full blown seizure a day until I was put on Dialantin. The Dialantin never controled the hand cramps, but did control the full blown seizures THANK GOD.
One of the strangest things about my experiences is the fact that no one ever let me know any real details about my epilepsy. Not my doctors or my parents. I really had no idea there were so many different types of seizures. I was just told I had epilesy and that there was no cure, but that it could be controled. I have done much searching lately to try and see what type of seizures I had. Does anyone else here have similar seizures.
Anyhow after many years of 400mg of Dilantin a day and the occasional full blown seizure due to missed doses mostly. I am 29 years old now and have been off meds since I was eighteen.
I am now having some twitching in my left thumb and index finger, and I am very afraid of what this may signal. although it is not the hand cramping I experienced as a child it is uncontrollable and seems to alternate being either my thumb or index finger. It lasts only a second or less, but is frequent.
I would like to ask if any of you know a basic percentage of children who outgrow this type of epilepsy may have future problem. I have also recently started on Zoloft, could this be related.
RE: Simple Partial followed by Generalized Tonic Clonic-Sometime
Submitted by taito2000 on Sun, 2004-11-28 - 20:11
The same thing happens to me when I have GTC seizures, and I did have a similar pattern of what occurred to you. Usually, I'll just have a simple partial seizure (although mine are different in that I just stare at the ground and can't talk until it passes), but when I do have GTC seizures, it will start out as a simple partial seizure, and then I'll go into convulsions.
But what happened to me with the med reduction was similar as well. I was on Neurontin and had gone without a seizure for three years, so the neurologist I go to suggested that we reduce the meds. We did so, and once I was completely off it for a while, I then started having the simple partial seizures (although we didn't know it at the time). We brought the dosage back up at my mom's insistence, and after six years, it was recommended that we reduce the dosage again, and we did so. In the second week of reductions, I had a GTC seizure. I had two more before I started on Keppra, and I still have simple partial seizures, but haven't had any GTC seizures since July of '03.
Sorry to give such a long explanation, but once I get started telling that story, I just can't stop. BTW, the simple partial seizures started when I was 16.
The same thing happens to me when I have GTC seizures, and I did have a similar pattern of what occurred to you. Usually, I'll just have a simple partial seizure (although mine are different in that I just stare at the ground and can't talk until it passes), but when I do have GTC seizures, it will start out as a simple partial seizure, and then I'll go into convulsions.
But what happened to me with the med reduction was similar as well. I was on Neurontin and had gone without a seizure for three years, so the neurologist I go to suggested that we reduce the meds. We did so, and once I was completely off it for a while, I then started having the simple partial seizures (although we didn't know it at the time). We brought the dosage back up at my mom's insistence, and after six years, it was recommended that we reduce the dosage again, and we did so. In the second week of reductions, I had a GTC seizure. I had two more before I started on Keppra, and I still have simple partial seizures, but haven't had any GTC seizures since July of '03.
Sorry to give such a long explanation, but once I get started telling that story, I just can't stop. BTW, the simple partial seizures started when I was 16.