Any and all advice is very, very much appreciated. Cuz I'm feeling desperate.
All right. So, I am now 26, and was diagnosed with epilepsy when I was 14. I only ever had these 10-40 second episodes of blanking out and becoming unable to respond to external stimuli, but retaining my consciousness, and having a memory of the event afterward. A combination of Carbatrol and Keppra kept my seizures at bay for two years, but when my pediatric neurologist and I tried to wean me off of my meds due to my current stability and positive prognosis, the seizures came back. And when we upped my doses again to what they had been originally, they unfortunately stayed back.
When I turned 18, I had to find another neurologist. He kept me on the Carbatrol but made Lamictal the add-on, though for two years it did nothing but make me tired and depressed — and although it never showed any signs of bettering my epilepsy whatsoever, my then-neurologist insisted on doing nothing but upping my dosage of it every time I saw him... and then fired me as a patient when I voiced my desire to simply wean myself off of it, since it was doing me more harm than good.
At this point, when I was 20, I simply weaned myself off of my medications after my most recent neuro's dismissal of me (my pediatric neurologist, through our weaning attempt, had taught me how to do so safely), to absolutely no increase in my seizures whatsoever. I still had the blanking-out episodes, on average every-other day. They didn't really adversely affect my life in any way, though. I remained pretty independent.
I went without meds until I was 24. At this point in time I'm living in New York City, working as a freelance writer. The stress of the city is getting to me. I have my first-ever tonic-clonic the October after I move there, after two nights in a row out drinking. I had never seen any sort of correlation between alcohol and epilepsy before, so I didn't fully make the connection between the seizure I had and the double-hangover. Skip ahead to February, Mardi Gras time. Another two nights in a row out drinking, another grand mal the next day upon returning to all the stress surrounding me and smoking a cigarette. This time, my flatmate witnessed it and called 911. Having ended up in the ER now, I thought that that might be a wake-up call and that I actually should return to meds.
The first thing I was prescribed was Keppra. I got my prescription filled at a random WalGreens, and was given some generic brand. I didn't even question it... just took it. Exactly one week after beginning the generic Keppra, I had a whole new type of seizure. I went to a local cafe, and after one sip of coffee, was told that I "fainted". I knew that I would previously not have had a seizure at that time of day, nor in that situation. At this point, I upped my dose to the higher end of the range that my neurologist had prescribed me (800 mg? I believe I had been taking 500 mg/day that first week?), not making the obvious connection — that the medication was the very thing that brought about this worsening.
By this point, I was having perhaps one seizure every other day, still mostly just the consciousness-retaining types, but with a few black-outs thrown in. I end up getting prescribed Zonegran, which I take for about a month. It gave me a strange rash, as well as some other adverse side effects and no benefits at all, so I discontinue usage. By now, basically all of my seizures are black-outs.
I then end up taking Dilantin for a couple of months. It decreased the number of seizures to one every two or three days or so, but made me feel like a zombie. I realized that I would rather be having seizures than have completely static energy. Never feeling fully awake OR tired. So, I tapered off of that. At this point in time, I was taking a Klonopin once every few nights when I couldn't get to sleep.
Then I took only Klonopin, which seemed to help my condition somewhat, but I was still having seizures about once every three days. And, despite what help I did see from the Klonopin, I got tired of only ever getting six hours of sleep, which is one effect it had one me. I always felt really drained of energy on the Klonopin — which I took regularly morning and night for about six weeks — so I quit taking it. The following benzodiazepine withdrawal threw off my menstrual cycle, made my hair fall out in the shower at an increased rate, and gave me loose stools for the next five months (a side effect that I first saw with the Zonegran, but had since ebbed). Oh yeah, and increased the number of seizures I was having.
I quit taking the Klonopin shortly after moving to Portland, OR, where I am now. For months now, I have been pursuing neurofeedback therapy. I have found that I am sensitive to gluten, as well as soy, and have cut those out of my diet. I have discovered Qi-gong meditation, which seems to be helping - its calming effect actually appears to be a key part of my healing. All of these lifestyle changes and treatments appear to be helping in some way or another. . . however, I am STILL having at least one seizure a day though. In some cases, five or six. And so, I am considering revisiting pharmaceuticals... though I definitely fear another bout of worsening, as I experienced upon taking the generic Keppra before. (I am also considering medical cannabis, since we have that in Oregon.)
Please, I want some input. Have I gone too long with having multiple seizures a day? Is my brain, most likely, just stuck in these patterns now?
Has anyone recovered from such severe epilepsy... meaning, is it possible at this point to find something that might actually quash the seizures?
After doing some investigating on this site, I find that Keppra is often accredited as being one of the best AEDs out there. Is it worth trying again, in my case? In fact, is there something about taking the brand-name Keppra that might be particularly HELPFUL because it was generic brand that seemed to set me on this downward spiral? Or, should I definitely avoid the Keppra because of what its cousin did to me?
Sincerely, any and all advice is very much appreciated. I find myself terrified of being out of solutions, and of simply being doomed t o losing my consciousness multiple times a day for the rest of my life.