Thank you everyone or your welcome posts. This has been a week and a half of terror. I have never felt so much pain. My heart goes out to all of you have suffered for years. I am praying that my problems stem from a vitamin B12 deficiency. I have good news. Yesterday was the first day I was actually able to shower, brush my teeth, wash my hair and eat solid food! I do not know if the B12 I am taking is helping or if it is the Gabapentin. Anyway, I am ecstatic. The pains are just in my forehead now and are down to about a 5. Hoping, hoping, hoping....this night mare is almost over. I thank all of you for taking the time share your stories; they are a lifeline in a sea of agony. I pray that someday soon there will be a simple solution to this horrible disease.
Joy, I have been diagnosed with B12 deficiency many years ago and I know my TN wasn't caused by it. But that doesn't mean yours isn't. I do have lasting neuropathy in my feet. Before I was diagnosed with b-12 deficiency, I started falling, my toes would not stop moving, my arms would have spasm and wake me up at night because they would hit me in the head. It was awful. I was put on a high dose of b-12 and I felt better after a month. The sublingual is the best but now I can't even absorb that so I have to get shots each month. No big deal but I'll have to take them for the rest of my life. And the next day I feel so much better it's amazing.
The hope is that B12 will repair the myelin and you can get back to normal. It actually may have kept my TN in check for many years. I would just have this feeling of pressure, no stabbing pains until much later. But if an artery is rubbing on your nerve eventually it will damage the myelin permanently. By any chance do you take Metformin? B-12 is becoming a big problem for those on Metformin. The best thing is that there is no danger of too much b12. Keep on it even if it wasn't the cause of your TN. As we get older our bodies do not absorb it well, and a low b12 even mimic dementia. Before they came out with vitamins, this deficiency used to kill people.