Hi there, I'm new to the forum, and would greatly appreciate any and all advice on my situation. Please bear with me as I tell the longwinded story of my travails with epilepsy, from my diagnosis to now, including what medications I’ve taken over the years. Truly, any input you have on whether or not my brain chemistry may be permanently altered, and any suggestions as to where I should go from here, are very, very much appreciated.
I am now 26, and was diagnosed with epilepsy when I was 14. I took Carbatrol and Keppra upon being diagnosed, and it kept my partial complex seizures at bay for a couple of years. When my neurologist tried tapering me off when I was 16, however, the seizures came back, and my neurologist and I subsequently couldn't get the same dosages to do the trick again. Fast forward, long story short, when I was 20 and in college, I just tapered myself off of the Carbatrol and Lamictal that I was then taking -- a combination that was making me lethargic and depressed -- and just accepted the fact that I would have a 10-20 second episode of "zoning out" in the morning, every other day or so. Tapering off in no way worsened my seizures. If anything, there was minimal improvement, as I just felt overall healthier.
Note that I had never had a grand mal seizure, or lost my consciousness, during a seizure, at this point in my story. I would simply be rendered unable to respond to external stimuli for less than a minute, and would be able to remember the entire episode in hindsight. And for four years, I just dealt with having 10-20 second episodes of impaired consciousness every other day or so. No big deal.
Two years ago, when I was 24, I decided to move to New York, where I worked as a freelance writer. The stress of that situation turned out to be less than ideal for my epilepsy, and four months after moving to the city, I had my first-ever grand mal seizure in November 2011 -- the day after my second night in a row of drinking a moderate amount with friends -- and upon waking up to loads of work-related stress.
December 2011 and January 2012 went by all right -- I had a few seizures more similar to the sort that I was used to from before, but with my consciousness more impaired than it had been, though not totally gone. However, these were such infrequent events that I didn’t think much of it.
For three weeks in February 2012, I began drinking Bolthouse Farms Green Goodness -- a nutritious healthfood drink packed with vitamins -- every morning, and didn't have any seizures at all -- not even the milder kind I was used to having! However, for Mardi Gras later in February of 2012, I did something idiotic -- I went drinking two nights in a row again. And, lo and behold, the next day -- which was stress-filled with work I had to catch up on -- I had a grand mal seizure. Which my flatmate witnessed, and so she called 911.
I interpreted my ending up in the ER was perhaps a wake-up call to start taking meds again, and so ended up seeing a neurologist, and was prescribed 500-1000 mg Keppra/day. I picked up some generic Keppra at the pharmacy, and one week after beginning to take 500 mg/day, had an atypical seizure. I was at the coffee shop, and was told that I "passed out" upon taking my first sip of coffee.
I took the generic Keppra -- upping my dose to 1000 mg -- for another couple of weeks. In hindsight, I see that the keppra most likely CAUSED that coffee-shop seizure that I had. After another two weeks, I tapered myself off the generic Keppra because it made me feel miserable in several ways. I was bloated, gassy, lethargic, and unhappy.
I subsequently went in for an EEG at NYU med center. I was there prescribed Zonegran, which I took for a few months, from April - June 2012. It didn't have any noticeable effect on my seizures. By this point, in May, I was having about three consciousness-losing seizures a day -- unlike anything I had ever experienced before. I decided to leave the city and stay with my family so that I could recover. I was finally given a Klonopin prescription in July 2012, so that I could take it on an as-needed basis to calm my brain down either when I needed to get to sleep or simply have a day that was not anxiety-ridden.
I took the Klonopin every few days, and began seeing a new neurologist back in my hometown. He got me off of the Zonegran and prescribed me Dilantin, which made me feel like a zombie. I took the Dilantin for fall of 2012 and thensome -- August - October 2012, really -- before I realized that I would rather just be having seizures than feel so absolutely static and lifeless in my energy. It didn't even do away with all of my seizures, anyway -- I wasn't having them every day, but did have one basically every few days. I also had to take melatonin -- recommended by my doctor -- to get to sleep at night while on the Dilantin.
I got off the Dilatin in November, and tried taking Carbatrol again, upon this second neurologist’s suggestion, for the rest of 2012, to no avail. In November, I began taking the Klonopin more regularly, as it did seem to keep my seizures somewhat at bay.
By January 2013, I was no longer taking the Carbatrol, as it was not having any noticeable effect. At this point, I was taking .25 mg klonopin 2x/day.
In February, I moved to Portland. I noticed that I could only ever get 6 hours of sleep while taking the Klonopin, and knew that that couldn’t be healthy, so I decreased my dosage over the next week, and quit taking it. I thought that since I had only been taking it for a month and a half on such a regular basis, that there would be no harm in tapering off in the span of a week. Upon seeing how it affected my sleep, I in fact thought it best to cease any and all relations with that drug ASAP, the sooner the better.
Ever since quitting the Klonopin, I’ve been experiencing benzodiazepine withdrawal. Not only did my seizures increase in frequency, but my menstrual cycle disappeared. (These are known side-effects of benzodiazepine withdrawal. While it gives me hope that I am still just experiencing benzo withdrawal -- which is known to last for quite a while, in some cases -- there were obviously more drugs involved than just the Klonopin. The problem obviously originated, and had gotten worse, before it even entered the scene.)
In telling my story, I'll also share my current concerns:
Have I permanently worsened my epilepsy by taking all these drugs in the span of just a year? I obviously should have just stopped drinking after that first grand mal that I had; however, I had never, ever seen a correlation between drinking and seizures before, and thought that it was just a fluke of some sort. Hindsight is 20/20.
Specifically, did the generic keppra -- which has been purported to worsen seizures in cases other than mine, my research reveals -- permanently alter my brain? After all, it was ONE WEEK after beginning to take it that I saw a definite change in my epilsepy. That seizure at the coffee shop -- being told that I had just randomly “fainted” -- was entirely new. Not hangover-induced... but occurred upon taking ONE SIP of coffee. And, I was drinking coffee every single day at this point in time.
Could the generic Keppra still be in my system after all this time?
Or, could I have just taken so many drugs over the span of that year, that somehow there is still some sort of combined residue in my system, even six months after getting off the last of them?
Could it be that introducing so many pharmaceuticals to my system over the span of just a year screwed me up? Could these effects be permanent?
Is this just a matter of aging? After all, I did have those slightly more severe seizures during the winter of 2011/12, AFTER that first alcohol/hangover-induced grand mal the previous fall, and BEFORE taking any medications. They were relatively mild, but still worse than what I had ever experienced before moving to New York. As in, I couldn’t remember the entirety of the episodes, but they were still just partial complex seizures.
Ever since February of this year, I have been pursuing alternative treatments. Naturopathic doctors have been helping me to detox. I have been pursuing acupuncture, to regain balance to my system, as well, and I do see myself getting better -- I went three days in a row in June without having a seizure, and my period returned in July... it seems that with every new month, I go more and more days seizure-free (last month was a grand total of seven). I seem to go two days in a row without a seizure, every two weeks, at this point in time (as of September 2013).
At the end of July, I also began pursuing neurofeedback therapy, and have yet to see whether or not that will bring any real improvements.
At this point in time, I have about two seizures a day, average. They aren’t grand mals, but I do lose my consciousness and am unable to remember the episodes. They typically last about a minute, and I am usually post-ictal for a couple of minutes afterward.
An immense THANK YOU is due if you read the entirety of this post, somehow making it this far. Although I see minor, gradual improvements -- which are considered standard for someone going through benzodiazepine withdrawal -- I nonetheless feel desperate and sometimes begin to lose hope, wondering if I’ll ever get through this.
Please, any and all input is very, very much appreciated. ANYTHING helps.