Hi everyone!
I joined the forum a while back, when I was staying at my parents' house in Arkansas, but should reintroduce myself since I have been basically inactive on here since moving to Portland, OR earlier this year, and being caught up with settling myself in a new place. My story is basically that I was diagnosed with epilepsy when I was 14 (I am now 26), and only ever had consciousness-retaining seizures that would last for about 20 seconds and render me unable to respond to external stimuli, but still leave me aware of my surroundings. I took Carbatrol and Keppra for a while during high school, and had success with that for a couple of years... then my pediatric neurologist tried tapering me off, and the seizures came back, and then we put me back on those same AEDs to no avail... then another neurologist put me on Lamictal, which brought only side effects, and no relief... then I just tapered myself off during college, and carried on with life.
I went successfully without any meds for about 4 years. I still had daily zone-out episodes, but they didn't really affect my life adversely at all. Again, I was conscious throughout them. Last year, however, when I was living in New York City and working as a freelance writer, the stress of surviving in such a pricey place through such an irregularly paid manner made my epilepsy worse than it had been before -- I had my first-ever grand mal seizure, which occurred after two nights in a row of drinking. Stupidly, I went to see a neurologist rather than simply realize that I should simply avoid alcohol, and the ensuing prescriptions of generic Keppra, Zonegran, Dilantin, and Klonopin that I went through last year brought on a new sort of random, blacking-out seizure that now occurs practically daily. Really, I saw that one week after beginning my generic Keppra, I had a "fainting spell" at my local coffee shop, which was unlike anything I'd ever had before: neither the sort of consciousness-retaining zone-out that I'd become so accustomed to, nor the full-out grand mal that I had after those two nights of drinking. This sort of "fainting spell" only became more frequent as I went through those other medications last year... and now I often have them multiple times a day. I'm wondering... can anyone speak to whether or not the new types of seizures brought on by some of these drugs could now be stuck with me permanently? I mean... how often does irreversible damage occur from AEDs? Getting off the Klonopin that I was taking earlier this year was particularly rough, as the benzodiazepine withdrawal seemed to exacerbate my seizure activity even more.
I ended up moving to Portland in February specifically so that I could take advantage of alternatives to pharmaceuticals that are more common here than in many locales throughout the US. Namely, I am now pursuing acupuncture as well as neurofeedback therapy, and I am interested to hear: has anyone on here successfully gotten their epilepsy under control without AEDs? Perhaps through neurofeedback?
It seems like the neurofeedback is helping. For instance, I went two days in a row without having a seizure after my session this past Wednesday, for example. Two days is significant, seeing as there have been some days in which I've had up to five seizures in the span of 24 hours.
Then, I had one seizure on the third day after my session. . . and another one today. . . so I am basically wondering... what are people's experiences with neurofeedback? I'm eager to hear anything and everything that fellow epileptics have to say about this technology. In cases in which people have found success... did you have any experiences with effects of treatment lasting, say, for only two days or so, early on... and then the benefits lasting longer and longer, with the more treatments that were underwent, perhaps? I'm hoping that I've found something that will actually bring me relief, if I'm just patient enough to stick with it long enough.
Truly, any and all information is very much appreciated.
Many thanks,
Elle
I joined the forum a while back, when I was staying at my parents' house in Arkansas, but should reintroduce myself since I have been basically inactive on here since moving to Portland, OR earlier this year, and being caught up with settling myself in a new place. My story is basically that I was diagnosed with epilepsy when I was 14 (I am now 26), and only ever had consciousness-retaining seizures that would last for about 20 seconds and render me unable to respond to external stimuli, but still leave me aware of my surroundings. I took Carbatrol and Keppra for a while during high school, and had success with that for a couple of years... then my pediatric neurologist tried tapering me off, and the seizures came back, and then we put me back on those same AEDs to no avail... then another neurologist put me on Lamictal, which brought only side effects, and no relief... then I just tapered myself off during college, and carried on with life.
I went successfully without any meds for about 4 years. I still had daily zone-out episodes, but they didn't really affect my life adversely at all. Again, I was conscious throughout them. Last year, however, when I was living in New York City and working as a freelance writer, the stress of surviving in such a pricey place through such an irregularly paid manner made my epilepsy worse than it had been before -- I had my first-ever grand mal seizure, which occurred after two nights in a row of drinking. Stupidly, I went to see a neurologist rather than simply realize that I should simply avoid alcohol, and the ensuing prescriptions of generic Keppra, Zonegran, Dilantin, and Klonopin that I went through last year brought on a new sort of random, blacking-out seizure that now occurs practically daily. Really, I saw that one week after beginning my generic Keppra, I had a "fainting spell" at my local coffee shop, which was unlike anything I'd ever had before: neither the sort of consciousness-retaining zone-out that I'd become so accustomed to, nor the full-out grand mal that I had after those two nights of drinking. This sort of "fainting spell" only became more frequent as I went through those other medications last year... and now I often have them multiple times a day. I'm wondering... can anyone speak to whether or not the new types of seizures brought on by some of these drugs could now be stuck with me permanently? I mean... how often does irreversible damage occur from AEDs? Getting off the Klonopin that I was taking earlier this year was particularly rough, as the benzodiazepine withdrawal seemed to exacerbate my seizure activity even more.
I ended up moving to Portland in February specifically so that I could take advantage of alternatives to pharmaceuticals that are more common here than in many locales throughout the US. Namely, I am now pursuing acupuncture as well as neurofeedback therapy, and I am interested to hear: has anyone on here successfully gotten their epilepsy under control without AEDs? Perhaps through neurofeedback?
It seems like the neurofeedback is helping. For instance, I went two days in a row without having a seizure after my session this past Wednesday, for example. Two days is significant, seeing as there have been some days in which I've had up to five seizures in the span of 24 hours.
Then, I had one seizure on the third day after my session. . . and another one today. . . so I am basically wondering... what are people's experiences with neurofeedback? I'm eager to hear anything and everything that fellow epileptics have to say about this technology. In cases in which people have found success... did you have any experiences with effects of treatment lasting, say, for only two days or so, early on... and then the benefits lasting longer and longer, with the more treatments that were underwent, perhaps? I'm hoping that I've found something that will actually bring me relief, if I'm just patient enough to stick with it long enough.
Truly, any and all information is very much appreciated.
Many thanks,
Elle
