Concerned and looking for some advice.

Hey there. I'm a first time poster here, though I've looked in on a lot of discussions over the last couple of years.

I'm 40yrs old and have been dealing with my seizures (which are tonic-clonic convulsive) for going on 20 years now (will be twenty years come January of 2015, to be exact). Over that time I've dealt with having a few seizures a month, to having one six-month time frame where I didn't have any seizures at all (still not sure why that was, or what was different than any other time), to having multiple seizures a day just earlier in the current year, to now having them about 2-3 times a week.

I have pharmacoresistant epilepsy, and have been, at one time or another, on nearly every type of seizure medication that can be imagined. Though some of them worked for a little while when others didn't do anything, even after they upped dosages and what not on those that worked, they always ended up not working after 6 weeks to 2 months.

So, after getting tired of constantly suffering the side effects (which it seems I -always- get) of all the meds I was taking, and getting equally fed up with different neurologists trying to get me to take things I'd taken before (they always said, "But You haven't taken it for me yet"), I began doing a lot of research on alternative methods to try and give myself some measure of relief from these things. That was hit and miss mostly, to be honest, but while doing so I came across a nootropic supplement (which seems to be mostly L Tyrosine and Choline?) that supposedly helped with memory retention. My memory isn't very good these days, due to my seizure frequency and severity, so I thought I'd try it out just to see if maybe it'd help in the way it claimed it could.

Long story short, I found that while on this supplement (at least at the beginning) it cut my seizures from 2-3 a day, to 1 a week. I still have no idea how, or by what process, but to say I was both astonished and amazed at how much it helped is a massive understatement.

Now that I've been on it for going on four months, it too seems to be waning now, and I am, admittedly, desperate. I'm terrified I'm going to go back to the every day seizure routine, and I'm not sure I can handle that again. It was so, so nice to have a reprieve for the time it was working on me, and I'm curious if anyone has any advice on what I should do now?

I'm 6ft 4 and weigh 265lbs, and have a lot of tattoos, and I'm a big, intimidating guy by most people's standards. I've found, especially over the last few years, that a lot of doctors don't seem to take me seriously when I try and explain my condition to them, or why I'm so hesitant to go through weeks of side effects for little, if any, help the meds they want to give grant. It seems like, because I look more like a biker than someone off the street, they assume I'm a drug abusing miscreant, when in reality I'm a homebody who doesn't do anything of the sort, for fear it'll cause my condition to get even worse than it already is.
I'm on SSI due to the severity of my seizure disorder, and I constantly get dirty looks from my doctors and other health care professionals because I appear to them as a big, strong, capable guy.

And I don't know what to do.

I wish I could be the big, strong, capable guy people see, but more often than not, I'm just scared, stressed out and anxious about my condition. Not to mention the ache I generally feel all over, from all the convulsing. Once upon a time I could get right back up and it didn't bother me so much, as I was young (and stubborn), but I'm not so young anymore, and it's starting to show in how I feel a lot of the times.

I smoke pot sometimes, because it does actually help a little (plus it calms down my anxiety), but I'm not a stoner or even a fan of smoking for recreational purposes, and smoke only small amounts so I don't get a tolerance to it as I have everything else (plus I don't live in a state where medicinal marijuana is legal at present, so there's that problem too).

What should I do?

I'm not going to lie. I'm a big, scary looking dude who's terrified that this is never going to end.

Any advice and opinions would be greatly, and sincerely, appreciated.

Thanks for Your time.