I just joined the community. So...... Hi Guys!
I'm a 25-year-old woman who was diagnosed with epilepsy at the age of 14. Initially, I had partial complex seizures lasting about 15 seconds apiece, allowing me to retain consciousness but rendering me unable to respond to stimuli. These would occur every other day, on average.
I took Carbatrol alone while in high school. I'd had a good diagnosis and so, after about three years of no seizures (at 17), I tried tapering off -- however, this didn't go so well, and the same seizures came back. Then my neuro and I tried Keppra + Carbatrol, to no avail... then I had to leave my nice pediatric neuro and find another, who had me on Lamictal + Carbatrol, to no avail.
This neuro did nothing but push Lamictal on me, with absolutely no improvement in my epilepsy. I suggested that we try something else, as I felt crappy on all these meds. His general bedside manner illustrated that he didn't really care for me as a patient -- I sometimes had to wait three hours for my appointment, without so much as an apology -- and when I suggested that these meds were doing me more harm than good, and that I knew this since it's MY body (when he questioned this point), he dismissed me as a patient.
After this, I found (via ProPublica) that he had indeed accepted rather larger sums of money from GlaxoSmithKline (the company that produces Lamictal), which solidified my decision to taper myself off my medications, very gradually, and without the help of a neurologist. Afterward, I found myself more energetic and happier, with no increase or worsening in my seizure activity. Still, though, having 15-second zone-outs every other day that I remained conscious throughout.
So, I've been on and off of medication for the past decade, but this year I experienced my first ever grand mal seizure. I had a couple, actually -- and both were after drinking two nights in a row. Bad idea. I'm not a huge drinker, but apparently doing that, coupled with being way more stressed out that I'd ever been in my life, basically, while struggling to survive alone in New York City just sent me over the edge. Before this year, I hadn't been on any meds for four years. And, to stress this again, both of these grand mal seizures occurred underneath extraordinary mental anxiety (two special work days, you could say), coupled with bad hangovers -- anomalies, pretty much. Unfortunate outliers. Aside from the two grand mals, I had still had just the partial complex episodes, as before.
After getting bed bug bites in an ER bed after my roommate saw me seize grandly, I got a prescription for Levetiracetam (generic Keppra), and as soon as I reached my full dose on it, I had seizures like nothing before. Not a grand mal, but not one I could remember, either -- just, blacking out. Every other day. These have taken the place of my old ones, that I used to be able to remember and remain standing throughout. I quit the Levetiracetam cold turkey back in March, 3 weeks after beginning it -- bad idea, obviously, but it made me feel so weak, and sick to my stomach, that I just couldn't take it anymore. The cold turkey quitting gave me a third grand mal. Whee.
Then I tried Zonegran, to no effect. I asked this doctor "Why Zonegran?" and she told me, "Well, all doctors have their favorite medications" and left the room. It didn't work at all, and so my affair with Z was short-lived.
Now I'm back at home with my family till I get this sorted out, and on 325 mg Dilantin/day and 200 mg Carb/2x/day. I'm still seizing like before. The Dilantin makes me feel like the walking dead. My energy level is so static -- I'm never tired enough to sleep (cue 3mg Melatonin/night), but never feel really awake. Hopefully, this Carbatrol (which I JUST began today) will prove to be what I need at this point, and I can go back to having dynamic energy levels.
I decided to join this forum primarily because -- while I do believe I have finally found a good neurologist whose team does seem to genuinely care about me -- I nonetheless am wary of doctors. I haven't had any grand mals since quitting Levetiracetam, but the sort of seizures that I have now, I NEVER had before taking it. My goal is to get opinions on whether taking Levetiracetam could have permanently changed my brain... which I guess I'll solicit in a thread not in the "foyer" section, heh. My neuro and his team tell me "no," that it can't possibly be the fault of the Levetiracetam. However, Levetiracetam also screwed my menstrual cycle up severely. Beginning back in March, I had a period once every two months. Turns out my progesterone levels were way off, and such was the case as recently as September, and THAT just got back to normal in October. Nothing aside from the Levetiracetam could have caused this, and THAT aspect of my body that it affected just got back into shape. So.... I'm holding out hope that maybe, maybe, my brain is still recovering from the Levetiracetam, too.
And on that note, telling you all far more than you ever cared to hear about my menstrual habits...
Good night, and nice to meet you all!!!
I'm a 25-year-old woman who was diagnosed with epilepsy at the age of 14. Initially, I had partial complex seizures lasting about 15 seconds apiece, allowing me to retain consciousness but rendering me unable to respond to stimuli. These would occur every other day, on average.
I took Carbatrol alone while in high school. I'd had a good diagnosis and so, after about three years of no seizures (at 17), I tried tapering off -- however, this didn't go so well, and the same seizures came back. Then my neuro and I tried Keppra + Carbatrol, to no avail... then I had to leave my nice pediatric neuro and find another, who had me on Lamictal + Carbatrol, to no avail.
This neuro did nothing but push Lamictal on me, with absolutely no improvement in my epilepsy. I suggested that we try something else, as I felt crappy on all these meds. His general bedside manner illustrated that he didn't really care for me as a patient -- I sometimes had to wait three hours for my appointment, without so much as an apology -- and when I suggested that these meds were doing me more harm than good, and that I knew this since it's MY body (when he questioned this point), he dismissed me as a patient.
After this, I found (via ProPublica) that he had indeed accepted rather larger sums of money from GlaxoSmithKline (the company that produces Lamictal), which solidified my decision to taper myself off my medications, very gradually, and without the help of a neurologist. Afterward, I found myself more energetic and happier, with no increase or worsening in my seizure activity. Still, though, having 15-second zone-outs every other day that I remained conscious throughout.
So, I've been on and off of medication for the past decade, but this year I experienced my first ever grand mal seizure. I had a couple, actually -- and both were after drinking two nights in a row. Bad idea. I'm not a huge drinker, but apparently doing that, coupled with being way more stressed out that I'd ever been in my life, basically, while struggling to survive alone in New York City just sent me over the edge. Before this year, I hadn't been on any meds for four years. And, to stress this again, both of these grand mal seizures occurred underneath extraordinary mental anxiety (two special work days, you could say), coupled with bad hangovers -- anomalies, pretty much. Unfortunate outliers. Aside from the two grand mals, I had still had just the partial complex episodes, as before.
After getting bed bug bites in an ER bed after my roommate saw me seize grandly, I got a prescription for Levetiracetam (generic Keppra), and as soon as I reached my full dose on it, I had seizures like nothing before. Not a grand mal, but not one I could remember, either -- just, blacking out. Every other day. These have taken the place of my old ones, that I used to be able to remember and remain standing throughout. I quit the Levetiracetam cold turkey back in March, 3 weeks after beginning it -- bad idea, obviously, but it made me feel so weak, and sick to my stomach, that I just couldn't take it anymore. The cold turkey quitting gave me a third grand mal. Whee.
Then I tried Zonegran, to no effect. I asked this doctor "Why Zonegran?" and she told me, "Well, all doctors have their favorite medications" and left the room. It didn't work at all, and so my affair with Z was short-lived.
Now I'm back at home with my family till I get this sorted out, and on 325 mg Dilantin/day and 200 mg Carb/2x/day. I'm still seizing like before. The Dilantin makes me feel like the walking dead. My energy level is so static -- I'm never tired enough to sleep (cue 3mg Melatonin/night), but never feel really awake. Hopefully, this Carbatrol (which I JUST began today) will prove to be what I need at this point, and I can go back to having dynamic energy levels.
I decided to join this forum primarily because -- while I do believe I have finally found a good neurologist whose team does seem to genuinely care about me -- I nonetheless am wary of doctors. I haven't had any grand mals since quitting Levetiracetam, but the sort of seizures that I have now, I NEVER had before taking it. My goal is to get opinions on whether taking Levetiracetam could have permanently changed my brain... which I guess I'll solicit in a thread not in the "foyer" section, heh. My neuro and his team tell me "no," that it can't possibly be the fault of the Levetiracetam. However, Levetiracetam also screwed my menstrual cycle up severely. Beginning back in March, I had a period once every two months. Turns out my progesterone levels were way off, and such was the case as recently as September, and THAT just got back to normal in October. Nothing aside from the Levetiracetam could have caused this, and THAT aspect of my body that it affected just got back into shape. So.... I'm holding out hope that maybe, maybe, my brain is still recovering from the Levetiracetam, too.
And on that note, telling you all far more than you ever cared to hear about my menstrual habits...
Good night, and nice to meet you all!!!
I'm glad you found us here. Sorry no one has responded yet. Sometimes posts get pushed down the list and, unfortunately, overlooked. 
