I made a video about possible causes of my tn, including cervical problems, viruses, and damage to myelin

I made this video to help find answers and document my journey for treatment of trigeminal neuralgia, geniculate neuralgia, hemofacial spasms, and torticollis spasms. Solutions are complicated by having systemic lupus, so finding the cause and source of the cranial problems has been very difficult. I can't help feeling that people with lupus and cranial neuropathies fall through the medical cracks, as there are not too many specialists who are familiar with both areas of medicine.

The more we get the word out, the more advocacy and better chances of a solution. I believe there IS a connection between neck "injuries" whether from a fall or severe degenerative disc damage, like what lupus can cause, and cranial neuralgias. Cranial nerve Xl, the auxillary nerve, if damaged can cause torticollis spasms. I have these spasms with my tn attacks. The proximity and chance for inflammation damage (from a process like lupus or an injury) is possibly the cause of trigeminal neuralgia and other cranial neuralgias as well. At the very least it may be part of a combination of problems that can cause cranial nerve damage.

Thanks for watching and listening to my story.
Hugs, Julie


Julie Koehler, Phoenix, AZ

"I'm no lazier now than I was 40 years ago, but that is because I reached the limit 40 years ago. You can't go beyond possibility", Mark Twain

thank you for making this video---very informative. And I agree, if we share info and keep looking we will find the cures we seek