Posted 5/23/2016 3:17 AM (GMT 0)
I also have TN. Back in 2010, I had both TMJs replaced, as well as much of the jaw itself. I get quite the looks when I walk through a medical detector. If you look down at my signature you'll see that I'm an avid collector of autoimmune diseases. Some people collect stamps or coins, but that is just so boring and unoriginal. Anyway, the he bones were fusing together and my mouth opening was down into the single mm.
The extensive surgeries created severe nerve damage. If I close my eyes, you can touch on area of my face, and I'll feel it in an entirely different area. While essentially all the nerves throughout the face are affected, the TN pain is the most severe.
As Straydog mentioned, there are a number of treatments that Drs use to try and treat the root cause. Those that involve a permanent change in the alignment or structure of the teeth/jaw are where there are completely treatment plans. That's something you and your Drs can discuss.
It sounds like you are looking for symptom management. We both know just how difficult this is to achieve. Seriously, amputating my head is something I've suggested many times. For whatever reason, I've yet to convince my Dr that this is a reasonable request. As far as supplements, there are few that I'm allowed to take. My immune system is wonky, and many of them interact with my meds.
In the past, Botox provided some relief. I also get nerve blocks every few months. In PT, an ultrasound/e-stem combo helps as well. As you know, any pain involving the head results in wicked neck, and the upper trap spasms as well. You mentioned acupuncture, but have you tried dry needling? Initially I didn't get much relief, but after it was done 3x a week for a number of weeks, there was definitely an improvement in the pain level. The muscles at the base of my skull are pretty much locked down in spasms. Needling, it's self helps, but if the spot is especially stubborn, e-stem can be used through the tiny needle itseof.
There are a couple of other techniques I've tried as well. As you already know, while there are options out there to help alleviate the pain, few(if any at all), provide any sort of lasting relief.
I'm still trying to convince my med posse that amputation is the best solution to provide lasting relief.