Getting off of Medication

Hey there, I'm new here and just looking for some casual thoughts on getting off of medication (Keppra in specific). I'm 21 at the moment, and my case of epilepsy is very mild (or so my doctor tells me), so everything will probably go fine. But I figured I would reach out and try to get as much supplemental information as I can, just out of curiosity. First I should give an overview of my situation, so here it goes! When I was about 15 I started having mild non-consulsant seizures where I remained totally conscious and otherwise normal (though I didn't know they were seizures at the time). They usually lasted about 1-2 minutes. My case of epilepsy must be focused most on some emotional processing system in my brain, because during the seizures I would just feel very weird, emotionally speaking. The feeling wasn't quite like sadness, or anxiety, or any common emotion I'm familiar with. The feeling was something altogether different, but I would definitely classify it as an emotion (and a negative one at that). During these emotional seizures I also got some odd tingling/pressure sensations which started around in my left arm, progressed into my chest, and then eventually down to my legs and right arm. Usually I would just keep working or going about my day during a seizure, despite feeling more than a little off for those 1-2 minutes; then when it was over I would go back to normal like nothing happened. Sometimes, if I was in a conversation when it happened I would react by asking the other person to not expect much conversational acuity for me for the next few minutes, in the same you might do if you were suddenly hit a very bad stomach ache; but we usually still kept on talking. During a minority of seizures (maybe like 15-20%) I would feel an acute sense of tiredness immediately after. If I was home then I would lay down for a 30-60 minute nap, though if I was at work then I would just wait 5 or so minutes and shake it off. Again, the need to rest after a seizure was an exception rather than a rule. I told my GP about all this, but he didn't know what to think. Because the seizure's physical sensations started in the left arm and chest he though that maybe I had a heart problem, but a few tests showed that I was alright in that area. These small seizures weren't very frequent either. On average I would say that I would go for 2-3 months without having one at all. Then eventually I would have a handful of days where I would have anywhere between 0-3 episodes per day, but then the symptoms would subside for another few months. I think a few times I went for close to a year without having an episode at all. It was certainly odd having a new attack after going without one for so long. I would be sitting there in my chair when it would hit for the first time in 6-7 months, and would I think "Oh, damn, it's this thing again; I totally forgot that I used to get these." So, I ultimately ended up not doing anything about this (undiagnosed) epilepsy until I turned 20. One day during my 20th year I found myself going through a perfectly average day. If I recall correctly I was pretty well rested, and I don't drink, so I wasn't smashed or anything like that; I was otherwise normal, not at all altered, and doing well. I went to the bathroom for a pee, and that's the last thing I remember. My dad said he heard banging noises coming from my (rather cramped) washroom. He went in shortly after and found me passed out on the floor. When the ambulance crew came I must have been starting to come around, because I recall the police officers and medics standing over my bed. But I was still pretty out of it, because I don't remember the ride to the hospital. At the hospital I eventually came to, and when the doctor came by she said that I had had a seizure. During the discussion the topic of my little recurrent "attacks" eventually came up, and she told me that I definitely had epilepsy. They sent me for an MRI, which turned out normal. Before they sent me home they gave me a doze of Keppra and a prescription for 500mg twice daily (totaling 1000mg daily). I went for a follow up a few weeks later, during which I got an EEG. I think it lasted for something like 20-30 minutes, but it came out totally normal (they said that if my case was mild then they would have to do an EEG during one of my little attacks to find anything, but given how infrequent they were that wasn't going to be doable). The little attacks quickly subsided while on the Keppra. I can remember having a few of them while on the meds, but I could count the number of occurrences on one hand. I think at the moment it's been something like 6-7 months since I had any "mini seizures." I was never very good at taking the meds consistently, and I'm still not. I go a lot of days with just one of the 500mg pills, so I probably really average something more like 700mg daily in the long term. When my neurologist asks me if I miss doses I usually just reflexively say "no, not usually" and then kick myself later for lying. Plus there's the fact that I don't feel like I would be able to communicate with him very well if I brought it up and started a conversation. I can't quite put my finger on why, but his personality makes me less than prone to opening up. Anyway, before I get to the topic of stopping the meds, I should mention one more thing. In the above text I only relayed the story of one full-blown seizure, but there was also another. There was a time, about 5 months ago, when I stayed over at a friend's college dorm for one night, and I had been especially bad at taking the meds in the few days prior. I think I had probably gone like 3-4 days without taking my pills. The visit was unplanned. I went up just to say hello, and ended up staying over (hence why I didn't even have my pills with me to begin with). I was already tired that day to begin with due to early morning classes, and on top of that we ended up staying up until like 3:30am in the arts building that night. When we got back to the dorm I collapsed into bed, but a few short hours later I woke up in the hospital feeling pretty awful; apparently I had a seizure during my sleep. I tell myself that one "doesn't really count," since if I had to take an uneducated guess I was say that I was probably experiencing withdrawal from the Keppra, and being that sleep deprived probably didn't help either (which ins't generally normal for me). So, anyway. On with what I plan to do in the future, and what I would love to get some thoughts on. Lately I'm really afraid of being on this medication indefinitely. I read in the news that they're still doing research on Keppra, even for the possibility of it treating diseases other than epilepsy. But what I'm afraid of is the possibility of it having yet to be discovered negative side effects, especially over a lifetime (since it's so relatively new). I mean, when you take that pill it goes into your stomach and then gets absorbed into your blood stream, and goodness knows what it might be doing to your bones, or to your liver, or heart, or kidneys, or nerves, or muscles, or colon, or any of the other thousands upon thousands of tissue types it comes into contact with over the course of a lifetime. Not to mention what other things it might be doing to your brain too. Unless it's something very targeted like a local anesthetic, I always look a medication as something that "does a lot of different things to your body, one of which just accidentally happens to be treating your condition." And it's the "lot of different things" part that I'm worried about lately. Perhaps I'm being paranoid and just talking crazy. And I'm definitely not a doctor, so the rant in the previous few sentences, if read by a medical professional, might make me seem a bit loony; feel free to tell me if it does. The thing is that lately I've started to experience symptoms of what is probably RLS. If I'm laying in bed in the afternoon to watch a TV show then my legs will behave in weird ways. They'll do two things, specifically. The first is that they will sometimes just throw off twitches without my control. And the second (and more consistent) one is that they will get an all-pervasive sensation of tingling/tightness that I just have to relieve by either tensing the muscle, or shifting the leg into a different position. It also happens during the day. It's mild and mostly ignorable if I'm rested, but it's pretty bad if I'm tired (which to repeat, is rare for me). This started about 4 week ago, and it's an every-day sort of problem. I can probably survive just fine with these symptoms, but there's a little voice constantly saying "maybe it's the Keppra." Whenever I bump my head, or crush a finger in the fridge door, or burn my hand on a pot, I think to myself that maybe it's because of the "coordination problems" which Keppra lists as a possible side effect. And I even have myself convinced that I'm having a more of these little accidents since starting the meds (though I haven't exactly been keeping a log). I recently watched this video by NYU doctor Orrin Devinsky: http://fora.tv/2008/10/26/Epilepsy_Conference_Dr_Orrin_Devinsky If I understand his speech correctly, he seems to be into the idea of leaving mild cases alone to begin with. Or at least to take patients who are doing well on their meds and start to slowly wean them off of the medications with the idea that perhaps the epilepsy won't come back (or perhaps will just be mild enough now so as to make further treatment unnecessary). Watching that video made me question if it's worth my being on the meds in the first place. I don't drive since I have an easy and stress free job as a software developer, to which I commute by train. My seizures are very infrequent, and maybe that first full-blown seizure when I was 20 would have been an isolated episode even without meds. Just the act of having to take the meds every day is annoying enough that I would rather just live with the mild seizure episodes every few months. If you add on top of that the worries about side effects, then it definitely feels worth it to me to try stopping the meds. I wouldn't even mind having a full-bown seizure once in a blue moon; it doesn't seem like something life threatening, and at the rate I was going some people probably have more seizures in a month than I would have in a lifetime. I know you can't stop them meds cold turkey (which I learned the hard way from that 2nd seizure in the dorms). Since I live in New York I'm going next month to see that Dr. Devinsky from the video, with the hope that he'll be up for the idea of giving me a schedule to slowly start taking less and less Keppra until we get it down to 0mg daily. Anyway, this writing has gone on for a lot longer than I expected. I'm not sure I even necessarily expect to get any responses. It just felt nice to organize my thoughts here in writing. Good luck everyone, And if you've gotten this far in reading, then thank you very much for the attention, -Patrick