atypical trigeminal neuralgia with no pain ?

[damson71]

I've recently been told by a neurologist "Your symptoms/clinical presentation is most consistent with atypical trigeminal neuralgia."  (Not quite saying I have it, but not saying I don't).  Perhaps he didn't go full on with a diagnosis because I'm not suffering from pain.  I'm wondering if this is how it starts for many people and whether I should expect to develop pain in the future.

It started in August 2022 when I was brushing my teeth.  I started to feel a wave of numbness on the left side of my face - kind of fuzzy like when a foot goes to sleep - and it went away in a few minutes.  Began happening once every few days and I noted it was when I brushed my lower inside left.  I figured I had some dental infection (I have a fixed bridge on lower left) and the dentist would figure it out at my next cleaning appointment in October.

So the dentist looks at my teeth and saw no signs of infection.  It's a really good non-corporate practice that was recommended by a friend who is a retired dentist.  They have a panoramic xray machine that can do a CT scan too and suggested we try that.  The result showed some kind of "structure" in my left cheek area, but no issues whatsoever with my teeth to cause this.

In the meantime, my wife (who is retired from healthcare) finds information on trigeminal neuralgia.  She thinks I need to see a neurologist, but I needed to start with my primary care MD.  Saw him in November.  I said nothing about my wife's thoughts and on his own he mentions maybe TN.  He puts me on 100mg gabapetin twice daily and see him again in 2 weeks.  Next time I tell him the gabapentin is doing nothing so he refers me to the university neurology department.

All this time, the frequency of the numbness increased.  It started to occur when brushing my upper left inside too.  It sometimes occurred when eating something crunchy.  But then it also occurred sometimes eating something soft, or even eating something that required no chewing like ice cream.  The intensity of the numbness increased, and extends as far as my left nostril, edge of my eye, and left of the jaw.  But no pain, just unpleasant numbness.

Saw the neurologist in early December and he put me on 300mg gabapentin twice a day.  So far, I don't see any signs of the gabapentin taking any effect.  It's possible it would have been worse by now without it.  I get the numbness almost every time I brush my teeth, and pretty frequently when eating.  Sometimes it just happens out of the blue.

I have read it can be excrutiatingly painful, like being on fire.  If my condition never progresses beyond numbness, I could live with it.  But I am concerned about it progressing.  Typical internet resources don't talk about cases like mine and don't talk about any stages of TN.  I figured the best place to understand this would be from other patients, so I found this forum.

If you are suffering from the extreme pain, you have my sympathies, and I'm sure you'll understand my concern about where I may be headed.