I'm new to this forum but NOT new to TN2. I've had it since Sept of 1998, at a time when even the most excellent Neurologists assumed that women in their 20s who had "headache like" symptoms were developing migraines. My symptoms didn't fit any of the Migraine symptoms reallly and never responded to any of the meds that worked on Migraines but that was the closest thing they could come up with so we started there. Went thru Cluster HAs, TMJ disorder, and of course the all too familiar, "it's all in your head," while implying that I was just a junkie.
After teaching for 13 years - 12 of them in pain, I quit my teaching job because my Teacher's Union wouldn't go to bat for me to get me long-term disability while I figured out what was really going on, I moved up to a tiny town in Alaska where I found an amazing PT who on my first visit asked, "have you ever heard of Trigeminal Neuralgia?" From there, she started some amazing body work called "Skin Rolling," which helped to get my myelin sliding and gliding again. Between that, a less stressful job, some diet changes (avoiding Gluten, Dairy, processed foods, and sugar), lots of PT exercises, and my meds, I was able to make some amazingly significant progress in both improvong my quality of life and tapering down on the opiates for the next 3-4 years.
In the last 2 of those 4 years, I may have overdone it, I'll admit. I eventually got a more professional job again, maintained a new relationship, and started being able doing things besides work again. I learned how to fish for Salmon on fly rod and became the formerly extremely active person I had been before 1998. Then in Septmeber of this past year, the pain came back with a vengence but this time in my teeth and gums. At that point, I still had been living with the pain behind my eyes but it had become so well managed, I was able to live with the daily mild to moderate range it stayed in. But this teeth and gum pain doesn't seem to respond to the same methods and meds.
So I recently started Tegretol. At first, it didn't seem to be helping, was super expensive, made me dizzy at first, and seemed to be affecting my memory and ability to focus at work. I also have to travel 500 miles to a Neurologist in Anchorage for it. Since I didn't think it was helping and I was getting to my last refill, I started to wean myself off of it. Good news and a bad mistake. Once I got close to being able to go off of it comletely, the pain came back to the point where it had been - that point where if you didn't know it was the TN2, you'd be wanting to pull out your own teeth with pliers.
So back on the Tegretol I go, hoping to go on a higher dose eventually to try to get this pain under control. Still, all of these meds and out of pocket expenses have literally bankrupted me once and now I'm in a very sticky situation.
So I'm on this forum to try to answer questions, help others benefit from my long-term experience with the condition, and of course, to get some support myself. Right now I'd love to know of any other meds that help with the teeth and gum pain. I'm not sure why narcotics and gabapentin were more effective on the pain behind the eyes and not effective in my jaw area. Maybe there are simply more triggers that I can't avoid. I'm trying to figure out what those are right now.
I guess that's it right now. Sorry for the long intro but we all have our stories and I think it's interesting to hear other people's journeys with this condition so none of us feel so alone. I'd love to hear any feedback that anyone might have for me or anyone with a similar story.