Hello to everyone. I am finally posting my intro post (it only took me 2 months to do one). I tend to be a bit of a procrastinator.
To my story... I had two febrile seizures as an infant and was placed on Phenobarbitol for a bit. It made me really hyper, so my mom stopped the meds. I was seizure free for a very long time (about 30-35 years?, maybe more). I started having auras very sporadically, where I would get this welling up feeling, then an awareness that "it" was starting again, my tongue would feel thick, I would have a metallic taste in my mouth and my scalp would get tingly and numb (like the old egg crack on your head thing we used to do as kids). I would also get the deja vu feeling, usually with the same memory and often accompanied with the same song. It's very hard to explain to people who don't understand, but I know I've seen posts here with the similar experiences. These episodes only lasted only 15 to 30 seconds or so, and I would always try to "talk" my way out of them by saying "no, no, no, no... stop!" I had these for many years (couldn't tell you how long because I was trying to ignore them). I didn't seem to have any after effects from them. I remember about a year ago having an episode at work where I had an aura then got a little confused and had a hard time trying to say anything coherent. It was very frustrating. I think it was around that time that I started doing research on what was happening. I realized that these episodes were most likely simple partials but again, didn't do anything about them, mostly because they seemed pretty benign and I didn't want to have the old "pre-existing condition" insurance problem. Well, that all came to a screeching halt last May 19th when I was in bed watching TV when I felt the aura coming on but didn't have time to try to stop it. I had my first adult tonic-clonic episode. Freaked out my husand royally! He said that I stuck my arms straight out with clenched fists, did the jerking thing, frothing at the mouth, etc. Next thing I remember was coming around to my husband and the friendly EMT standing next to the bed trying to get me to move onto the gurney. Long story short (too late!), I ended up in the hospital for a couple days (CT scan, MRI, EEG, sleep-deprived EEG, all normal). Released with a script for Keppra which I didn't fill because I never talked to a neurologist, just a hospitalist. Made an appointment with a neurologist a couple weeks later, then filled the script for Keppra after he answered my questions and I started to come to accept the diagnosis of E. Wiped out on the Keppra for about a week, but then my body adjusted. Now on 500 mg bid and have had good control. I have other questions, but will put those in other posts as this is turning into a book.
Anyway, I love this site, have been lurking for two months and am grateful to see that there is a site where people understand and are more than willing to help total strangers.
To my story... I had two febrile seizures as an infant and was placed on Phenobarbitol for a bit. It made me really hyper, so my mom stopped the meds. I was seizure free for a very long time (about 30-35 years?, maybe more). I started having auras very sporadically, where I would get this welling up feeling, then an awareness that "it" was starting again, my tongue would feel thick, I would have a metallic taste in my mouth and my scalp would get tingly and numb (like the old egg crack on your head thing we used to do as kids). I would also get the deja vu feeling, usually with the same memory and often accompanied with the same song. It's very hard to explain to people who don't understand, but I know I've seen posts here with the similar experiences. These episodes only lasted only 15 to 30 seconds or so, and I would always try to "talk" my way out of them by saying "no, no, no, no... stop!" I had these for many years (couldn't tell you how long because I was trying to ignore them). I didn't seem to have any after effects from them. I remember about a year ago having an episode at work where I had an aura then got a little confused and had a hard time trying to say anything coherent. It was very frustrating. I think it was around that time that I started doing research on what was happening. I realized that these episodes were most likely simple partials but again, didn't do anything about them, mostly because they seemed pretty benign and I didn't want to have the old "pre-existing condition" insurance problem. Well, that all came to a screeching halt last May 19th when I was in bed watching TV when I felt the aura coming on but didn't have time to try to stop it. I had my first adult tonic-clonic episode. Freaked out my husand royally! He said that I stuck my arms straight out with clenched fists, did the jerking thing, frothing at the mouth, etc. Next thing I remember was coming around to my husband and the friendly EMT standing next to the bed trying to get me to move onto the gurney. Long story short (too late!), I ended up in the hospital for a couple days (CT scan, MRI, EEG, sleep-deprived EEG, all normal). Released with a script for Keppra which I didn't fill because I never talked to a neurologist, just a hospitalist. Made an appointment with a neurologist a couple weeks later, then filled the script for Keppra after he answered my questions and I started to come to accept the diagnosis of E. Wiped out on the Keppra for about a week, but then my body adjusted. Now on 500 mg bid and have had good control. I have other questions, but will put those in other posts as this is turning into a book.
Anyway, I love this site, have been lurking for two months and am grateful to see that there is a site where people understand and are more than willing to help total strangers.
