Lynda,

Sorry you have such bad pain. I have only had one really painful episode of what I believe was TN--the first one many years ago--but those shocks under my ears were so excruciating that I remember thinking if they had lasted more than a split-second, they would be literally unbearable.

Like you, I have bilateral symptoms. In that first episode, I had about a dozen shocks over a week or two--all on my left side EXCEPT one on my right side.

In the seven years since then, I have continued to have almost daily face shocks, but little actual pain. My most common variety of electric shock--running in a semicircle around the outside of my eye and into the side of my nose and upper lip--is actually completely painless.

For maybe every ten shocks on the left side, I get one on the right side. At some times I will have a dozen or so of them a day, then they taper off and I don't notice them for a while, but they ALWAYS come back!

I, too, was once told (not definitively, not in my records except pretty vaguely, but clearly by the neurologist) that I had MS. That seemed to be based mainly on my Lhermitte's. No one ever talked about or acknowledged the bilateral facial shocks nor tried in any way to explain them.

I have since been told, essentially, that I'm a hypochondriac. My MRIs show only small, nonspecific spots, i.e., not MS according to the neurologists, although the radiologist says they are consistent with (not specific for) MS. I have had a large variety of weird symptoms (a period of arm incoordination when reaching, various paresthesias, numb or itchy or buzzy areas, etc.) but nothing that shouts MS (except Lhermitte's and, to my mind, the bilateral face shocks), and nothing dramatic except a sudden hearing loss and dizziness.

Everything I have read about TN says that bilateral symptoms--especially in a young patient (I was 42 when it started)--are a red flag for MS.

But, I guess since the shocks are subjective symptoms, in the real world they don't count for anything diagnostically--the doctors just want to ignore them if your MRI doesn't look specific for MS. I don't need treatment for my shocks, they are not a problem for me, but I hope your pain is being treated properly.

Best of luck to you,

Nancy T.