How old are you? If you are fairly young, there is an increased chance that your TN is due to MS. I am 31 and was diagnosed with TN when I was 28. My neurologist at the time was concerned about Lyme Disease because I was living in New England, and never gave me an MRI to test for MS. I later found out this was a huge mistake on his part.
I moved back to Oregon (where I grew up) and got a new GP, who asked right away if I had had an MRI to look for MS. She ordered one immediately. I had lots of small lesions and one large enough to be MS. I have another MRI scheduled for 6 months later to look for other possible causes of the TN (compressed nerve) or other new MS lesions.
I am assuming I have MS because I am a young white woman who grew up in the Pacific Northwest (very little sun/vitamin D), who has TN.
Now about my TN… I was first diagnosed when I had an intense attack of atypical TN (TN2). It was the most excruciating pain… I didn’t know anything could be that painful. It was constant - I couldn’t eat, think, or sleep for days. It was on my right side in my lower and upper jaw, jaw joint area, and up on the side of my head above my ear. After 5 days, I was on the verge of suicide before I finally got diagnosed and got some anti-convulsants. Carbamazepine gave me sores in my mouth and a tingly numb tongue, so I switched to gabapentin. It went away!
A couple weeks later I started to get the same symptoms on my left side, which is unusual. I took gabapentin and they went away.
Then for over a year, I felt almost nothing. Now and then I had a little twinge and I would just take a gabapentin and it would go away.
For the last few weeks, however, it has come back in an odd way. I am now getting the “typical” TN1 stabbing pains. First on my left side last week, and now on my right side. They are more around the temple/ear area, and the gabapentin does not seem to help at all.
So that was long. To wrap it up, I have both TN1 and TN2 on both sides. Other possible MS symptoms I have include pins and needles stabbing sensation, ocular eye pain, severe fatigue, bouts of hypersensitive skin, bladder disfunction (sometimes hard to empty bladder, sometimes urgently need to go all the time), and bouts of dizziness with ringing in my ears. Somehow I thought these were just normal things many people experience. Apparently not.
I really don’t want to have a spinal puncture because I have heard it can be so awful for some people and I am just unlucky with those kinds of things!
I’d love to hear your results.