My TN started in September 2014 with unilateral pain. I had bilateral pain for two days in October and then back to unilateral. Now it’s back to bilateral for the past 10 days. What patterns have others experienced with bilateral TN? What have your neurologists or neurosurgeons said?
Ironically, the first neurologist I went to said I couldn’t have a nerve problem b/c my pain was bilateral. Obviously, he was completely wrong, but it appears many in the profession are ill-informed about our condition. However, I have “atypical” or Type 2 TN, not the classic form.
Bilateral pain very often develops sporadically after a period of unilateral pain -- sometimes when the pain seems to "switch sides" for a while, only later to occur on both sides at the same time, generally in slightly different forms. At one time, any pain that seemed to "cross the midline of the face" was regarded as psychosomatic and labeled "atypical face pain". Among experts, that error is dying out. There is no such thing as psychosomatic or psychogenic pain. But some practitioners refuse to learn that.
Among our membership, quite a number are bilateral. For statistics, consult the article "Who Gets TN?" in the Face Pain Info tab of our menus. That demographic study of face pain may be the largest ever published in the Net to date. FYI, one of the improvements we were able to get into the NINDS Fact Sheet on TN two years ago, was the explicit recognition for the first time that trigeminal neuralgia can be bilateral.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, LWTN