Trigeminal Neuralgia...I feel your pain.
Unfortunately, Trigeminal Neuralgia seems to hit a lot of us with MS, especially those of us with lesions in our cervical spine. In layman's terms, it happens when lesions form on or near the trigeminal nerve. It is fairly rare, only 4% of those of us with MS suffer from it, but we are 400% more likely to experience trigeminal pain than those without MS.
The nerve that is affected is called the Fifth Cranial Nerve. It has three branches and affects the areas around our foreheads, ears and jaws, usually on one side of the face. I have experienced no other pain like this in my life. The sudden jolts of electric pain are so intense they take my breath away and leave me stunned for a few moments....breathless and shaking. It's hard to describe to those who have not suffered from it, but if you have, you know.
There are surgeries and medications for Trigeminal Neuralgia. I've tried the nerve block injections which helped for a month or two, and a few medications that didn't touch the pain. I am on Oxcarbazepine now and hoping it works, but I've noticed recently that my jaw is spasming during an attack and my teeth chatter like I'm freezing cold and I have no control over the movement.
We know, here at this website...we know about all of the lousy things MS can do to our bodies. I love that we boost each other and understand what it feels like to hurt in ways that others can't understand. We share information and experiences to help each other and the words hold such value. I wish I could tell you I had this pain under control and had a way to help you, but I don't have the answers. If you have had some relief from TN, please share it here and maybe someone out there will benefit from your knowledge.
In the meantime, I wish you peace and answers and hope and a blessed 2017.
Do you have a fear of needles and take medication that requires injection?