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I just decided to re-write my first post. So I joined a while ago, but moving cross country kind of stopped me from doing anything till I settled for a bit.
I started symptoms about six years ago, then had my first GM in front of people three years ago.
Since then, I've been on phenytoin with pretty typical results: a few random auras, PM seizures (aura + word memory loss + fear). I haven't had a GM since I started meds, though my wife noticed that once in a while I clamp my teeth when I sleep right before I wake up having an aura.
When I moved, my new neuro suggested moving to brand name dilantin due to changes in chemical composition of phenytoin over time due to vendor changes.
Everything's pretty fine, though I've since noticed my word memory has gotten pretty bad. I usually have a tip of the tongue at least three to five times a day, and it gets much worse when I'm stressed. Also, about once a month, I have around four days of pretty bad symptoms - a couple PMs, a few auras, and wretched migraines that make me want to take a drill to my brain. On the second or third day, it's about twenty or more auras during the day and at least ten or more PMs and my brain feels like it's caving in. It then disappears and comes back again in about four and a half weeks. It's like I've developed a weird brain-based menstrual cycle.
My new neuro wants to see if it continues over the next six months. I'm used to my old neuro who would see me about once every few months, and then whenever I wanted to see him. The new one just always says, "let's see how it continues."
So, that's me. Hope to have fun? Any opinions on the weird month-based symptoms or the constant tip-of-the-tongue thing that is not an aura?
PS, my auras are usually an odd weird deja vu (repetition of the same thing constantly while feeling weird), jamais vu, normal deja vu, and rarely: rotten smells.
I started symptoms about six years ago, then had my first GM in front of people three years ago.
Since then, I've been on phenytoin with pretty typical results: a few random auras, PM seizures (aura + word memory loss + fear). I haven't had a GM since I started meds, though my wife noticed that once in a while I clamp my teeth when I sleep right before I wake up having an aura.
When I moved, my new neuro suggested moving to brand name dilantin due to changes in chemical composition of phenytoin over time due to vendor changes.
Everything's pretty fine, though I've since noticed my word memory has gotten pretty bad. I usually have a tip of the tongue at least three to five times a day, and it gets much worse when I'm stressed. Also, about once a month, I have around four days of pretty bad symptoms - a couple PMs, a few auras, and wretched migraines that make me want to take a drill to my brain. On the second or third day, it's about twenty or more auras during the day and at least ten or more PMs and my brain feels like it's caving in. It then disappears and comes back again in about four and a half weeks. It's like I've developed a weird brain-based menstrual cycle.
My new neuro wants to see if it continues over the next six months. I'm used to my old neuro who would see me about once every few months, and then whenever I wanted to see him. The new one just always says, "let's see how it continues."
So, that's me. Hope to have fun? Any opinions on the weird month-based symptoms or the constant tip-of-the-tongue thing that is not an aura?
PS, my auras are usually an odd weird deja vu (repetition of the same thing constantly while feeling weird), jamais vu, normal deja vu, and rarely: rotten smells.