I really don't know anymore after joining this website.
I was originally diagnosed with what is now Type 1 bilateral TN six or seven years ago after wrecking my teeth (and having them pulled), demanding treatment for a disorder I don't have (TMJ), visiting the worst sort of chiropractors for imaginary "misalignments," and thinking I was flat-out crazy over the course of several years. As far as we can tell from multiple MRI/MRAs it's idiopathic, and I'm not inclined to let any doctor drill holes in my head just in case we're wrong. It may be tied to the brain lesions I keep developing, but there is no proof of that, so I've learned to live with "don't know why, it just is."
Diagnosis or not, I'm just not sure if it is TN anymore because of what I don't have these days.
I don't have much trouble dealing with the fear beyond the actual time spent in pain crisis. When I'm having that "gonna die" feeling, I'm scared as hell and know that the world is coming to an end, but when I'm in remission or on a decent med schedule it's just not there.
I don't have any fear of my doctors. I'm done listening in awe, and I feel required to take an active part in my own treatment... whether they like it or not. In my experience, most neurologists don't like it much, but that's how they earn their paycheck.
Don't get me wrong, sometimes they give great advice that I don't always agree with at the time. I asked one of my old neurologists if I should quit working. He looked at me with the most baffled expression and said, "Why? So you can sit around and think about how bad you feel all day? Wouldn't it be better to get it under control so you can keep working?" He was right, I know that in retrospect, but that didn't make him omnipotent.
I don't have confusion about meaning anymore. It is what it is, I don't deserve it or deserve to be without it. It's not fair or unfair, or karma, or anything. It's just really bad pain and life can go on once I get it under control.
Most of the time I don't even have the pain anymore, although I know from bitter experience that is subject to change. I've learned to recognize the warning signs and start medication when I've been in remission. I've learned to avoid the opiates that were making it worse for the first several years that I was undiagnosed. I've learned to take someone with me when I end up in the emergency room to avoid being shot up with morphine by doctors that can't understand me and have no idea what they're dealing with. I've learned my limits and usually avoid triggers because I'm not a fan of the alternative.
Do I still have TN, or should we call it something else? I almost feel like I lessen the meaning of the diagnosis for people who are suffering so much more today because it's just another part of who I am now. I'm Tina, I'm short and a little rounder than I'd like to be, my hair is turning gray, I'm a wife and mom, and every once in a while I hurt really bad for a while but mostly I'm ok.