New to this and feeling lost.

My name is Chris, and I am a 29 year old male living in Michigan. I've spent hours upon hours combing through this webpage and figured it'd probably be a good idea to just go ahead and join. I've had to get to know my disorder very attentively, because the small time windows with various doctors and specialists offer very little insight and have been inconsistent. Ultimately I've had to piece all of this together as best I can, but I'm still uncertain about a lot of things. But here goes. In August of last year, I was diagnosed with inattentive-ADD and prescribed adderall. In September, a couple weeks later, I had a tonic-clonic seizure and was found asleep on the floor of the office I was working in that day. I had only taken the prescribed dose, . I was so confused at the time that I didn't know what happened, nor did anyone else know for sure... Although I had random bruises on my body, every muscle I have was sore, and my tongue was wrecked. I had a second one in November lying in bed next to my wife. I moved up to Michigan from Georgia and we got married 3 weeks prior, so I feel absolutely awful for what this means for her, but she has been incredibly graceful, patient, kind, and unwaveringly loving. I woke from that one not knowing who she was, what year it was, where I was, or who had just been elected president. EMS was there and everything was a confusing blur. The ER contacted the neurologist they associate with and he told them to prescribe me Oxtellar XR. Based on my psychiatric history with a similar drug (lamotrigine) for stabilizing my moods, I was apprehensive and wouldn't take the medication until I had further clarity on what was happening. The first neurologist I saw was the worst medical experience I've ever had, although the EEG I had there supposedly showed abnormal activity during hyperventilation. I didn't trust it though, because the experience was radically unprofessional, but admittedly I experienced some symptoms flaring up during it. It was actually my new psychiatrist that convinced me it would be in my best interest to try the drug the neurologist had prescribed, so I did. I experienced a host of unmanageable side effects, so I stopped taking it before my brain and body got used to having it. I also stopped taking the adderall. The ER nurse had suggested I inquire with my psychiatrist about an alternate stimulant, Focalin, with the hope that it would have little to no effect on my seizure threshold. It was also a crapshoot, because I had a host of awful side effects from it. I stopped taking it a few weeks in. It is clear to me that I cannot safely take CNS stimulants. Even coffee, which I have been drinking since I was a little boy (even working as a barista for 7 years), has to be approached with a lot of caution. My sensitivity to fluorescent lights, TV and computer screens, noise and commotion, and any number of other stimuli have gone beyond my usual annoyance to being a danger for me. Since quitting my prescribed stimulants, I have continued having grand mal seizures for months now. Even getting adequate rest, adequate food, a pretty regular schedule, and a significant overall decrease in caffeine consumption, yet my disorder seems worse than ever before. I had 2 grand mal seizures last week on consecutive days. The 2nd one last week was with my wife at the mall while she was working on her laptop. She paid careful attention; I went into convulsions for 12 minutes and was in and out of semi-consciousness for half an hour, all of which is blacked out in my memory. In fact, I literally did not believe her when she told me I seized. Only when I started trying to move did it become obvious that it was true. She told me I needed to go to the hospital, because waiting until the 20th of this month for my next neurologist appointment didn't seem advisable under the circumstances. I was there for a day and a half for safety, observation, and testing. MRI, CT, EEG, and blood work all came back normal. But this was my 8th grand mal seizure, the last 4 being over the past month, and the injuries to my body and my postictal exhausted confusion made it very clear to everyone involved that I had definitely seized. The hospital kept me stable first with Ativan and then by administering and prescribing me Lamictal. My release papers included a packet of information about epilepsy. This was my second hospitalization for seizures within the same network of hospitals. No one said to me "here is your diagnosis", but it seems abundantly clear at this point. The messed up thing is I was pretty sure there was something neurologically wrong with me for a few years leading up to all of this mess, but I didn't know what the issue was. In fact, my neurological problems are a part of why I sought out treatment for ADD. Loss of focus, inability to concentrate, sudden loss of ability to communicate or comprehend speech or writing, mixed signals in my brain, some of it severe enough to be quite frightening, really -- like feeling frequently but not constantly locked in some sort of invisible forcefield that makes me cognitively dysfunctional. In fact, I can trace the beginning of those symptoms back a few years... When out of frustration I had abruptly stop taking my Lamictal. And though a few people over this time suggested I may be experiencing seizures, I didn't recognize them for what they were due to my ignorance about epilepsy and the different types of seizures that can occur. It took having grand mals to see and learn that I was, in fact, having seizures and it just progressed over that time. All the literature points to partial seizures with secondary generalization. The specifics haven't been medically confirmed or observed (although the aftermath of the GM's is easy to see), but the lamictal seems to be helping. I'm not sure if it's worth further diagnostics, like sleep deprived EEG or what have you. I guess that depends on their ability to assess and treat it with the front line medications. But strangely, I am going through a whole lot of denial intermittently throughout each day (Well, each day that I feel more or less "normal"). I think what I ultimately need in conjunction with diagnostics and treatment is a network of support with people more experienced than I and people who are in the same boat. This is a truly terrifying and confusing thing, but I want to get a grip on it and live a good life and a better life for my wife. And I want to in turn help others who suffer. Until now, I never had such a profound appreciation for various "awareness" groups, because I and most others I talk to were confused that this stuff would manifest in my late 20's, but I know now that that is a dangerous misconception. Anyway, I'm glad this is here and hope this will be a good resource for support and education. Any advice you all may have to offer will be greatly appreciated. -Chris