I had a root canal around January 2009. Doctors say they don't think there's a connection, but either I had an unnecessary root canal because the TN was causing pain or the TN started up right after the root canal. The endodontist put me on steroids and pain killers and we muddled through until about June when he finally raised the spectre of TN. I was mostly pain free until about a year later (June 2010), I was at a trade show when I started feeling these weird flutterings or twitches on my forehead. They weren't unpleasant or painful at first, just strange. By the end of the show however, I was in real pain a lot of the time and Ibuprofen wasn't cutting it. Back to the Endodontist who said in that solemn voice that it was TN. I had no idea what I was in for.
He sent me to some stupid Oral Surgeon who began me on Tegretol at such low doses it was completely ineffective and kept bringing me back every two weeks to up the dose a smidge. All I really remember about those days besides the constant pain was his giant hands front of my mouth holding one of those metal pokers trying to get in my mouth to gauge the sensitivity of each tooth and me in a puddle of my own tears fighting him off until I finally walked out. Dumbass.
I was largely worthless so my wife found me a neurologist who put the Tegretol dose where it should have been and I was happy enough to, at the neurologist's urging, stop taking Teg for a couple of months. <Cue spooky music> That is, until March of this year when it came back with a vengeance. One seriously bad night at the ER with no relief, but a referral to a new Neurologist who I like a whole lot more. The first one seemed more interested in pushing me to the Gamma Knife at the hospital he's affiliated with and putting me on brand name Teg saying the generics are less effective. I think he's full of it. The new Neuro put me on Neurotin and upped the Teg and that worked for about six weeks and now it's baaaaaack like Jack Nicholson in "The Shining."
That last bout caused me to lose about three weeks of work. Talking, eating, licking my lips caused spasms of pain at the 7 or 8 level for up to 2 to 3 minutes up to 12 or 15 times an hour. There was no way I could work. I'm a salesman. Tough to sell when you're writhing in pain on the floor or spouting expletives when you can open your mouth. Boss was pretty cool for a while, but not three weeks.
The meds worked while they worked, but they also left me in this cloud of stupid and clumsy. I used to be a "Jeopardy" kind of guy shouting out answers to Alex in a Scottish accent, but now I often have to reach for words and lose the train of thought which again is not so helpful for a salesman and supremely sucky for a "Jeopardy" fan. And these are the good drugs.
So, the pain is back and the prospect of losing a few more weeks while we get the meds right is not an attractive one. The boss is already frustrated and I've only had few appointments. I burned most of my annual leave earlier this year. But I'm interviewing surgeons and am determined to do something else besides heading onward into the fog.
I'm leaning toward MVD rather than Gamma Knife. Frankly I don't quite grok the notion of scrambling or killing the nerve rather than addressing the cause. But then I get a little weak in the knees when I see how serious MVD is. I also don't relish the idea of 30 more years of meds that work for a few months before we try some other combo.
So, that's sorta' my story for now. I feel a little embarrassed given the heavy crosses the rest of you are bearing. Your strength blows me away. My story isn't all that bad relatively speaking, but it is pain and it is my pain.