I've been following this great site for a while but have never posted. Not that I have much to contribute since my story pretty much mimics plenty of others I have read, except perhaps for my annoying trigger point location.
I have what I suspect is Type 2 TN, although they are calling this just some generalized neuralgia. It started with dental work three years ago (root canal, failed, apicoectomy #1, apicoectomy #2, and finally extraction).
After the extraction, I immediately developed severe headaches on the left side (same side as the molar). These persisted for 6 weeks, during which time I had an MRI which was normal. Headaches eventually subsided.
On advice of my oral surgeon, I went to see a very well-respected Neurosurgeon here in the Chicago area and he is treating me now. I am suspect of having this brain surgeon treating me, because I always get the feeling that he's eyebaling me for some type of surgery, but I am going with this at least for now. He did say that on the MRI, there is some artery that is pressing on the trigeminal nerve, but I don't think we're at the MVD stages yet, and with my symptoms perhaps less of a chance of a good outcome.
There is a trigger point that is about an inch inside of my nose (which actually had started to appear at some point during one of my dental proceedings). It's on the septum of my left nostril for those into nasal anatomy, about 3/4" up into my nasal passage. If I blow my nose, I'll say it, pick my nose, or in any way disrupt things up there, it's like tweaking a harp string that washes a dull aching pain across that area of my nasal cavity down into my ear where it nestles as a sharp and varying pain. Prior to the tooth extraction, this same trigger point washed the dull ache across the problematic tooth, which is why I insisted that it be extracted, despite my oral surgeon's assurances it was no longer infected.
Even if I avoid the trigger point there is still some level of pain all the time. Lately, it's been escalating. Like many on this forum, it feels great in the morning, but deteriorates throughout the day. By the end of day, the only thing I want to do is get into bed and forget about it. What a great life!
I just started on Tegretol 100mg 2x per day (having previously tried Cymbalta 60mg, which did work but insurance stopped paying for it, and then Lyrica 300mg/day which is not doing the job). Why they prescribed the Tegretol chewable tablets, I have no idea - I hope this med is available in standard pill/tablet format. In any case I hope it works because it is dirt cheap, costing only $3.00 and some change with my insurance plan.
Looking at the big picure and over-analyzing things as I tend to do, it seems to me that if I could get someone to just jam a needle into whatever damned nerve was at this trigger point, and inject some steroid and anesthetic, it might knock it down, and then perhaps the meds could keep the pain at bay, at least for a time. That's my theory anyway.
Yet I do not see much mention on this site of anyone having trigger point injections, or any other type of injection. Is this just not an option for most people? Can these neurologists not determine the specific nerve(s) that are causing the pain? It just seems that taking such a systemic approach (such as anti-siezure medication) to something that is clearly localized is backwards-thinking. Yet I'm no neurosurgeon.
I didn't have any of this prior to the dental work, so it would be hard to convince me that an underlying artery against a nerve suddenly decided to wake up. Something was damaged, and it seems that some expert should be able to repair it.
You find me a window now, and I'm going to scream, "I'm mad as hell, and I'm not going to take this anymore!" Now who is with me?