Never diagnosed...except by Dr. Google

I am new to this website, and to Trigeminal Neuralgia in general. I have been suffering with facial pain for two and half years, on both sides of face. It is constant pain, with random, shooting pains throughout face and ears. This also effects my teeth, gums, head and jaws as well. The tension from the pain will hurt my shoulders and back. I have been told that I have TMJ disorder (my jaw clicks occasionally) but I am not convinced. The pain brings tears to my eyes; I can't do daily activities either. I Have had MRIs done to brain, neck and lumbar spine (disc out of place, but not touching nerves). All normal. I am on my 6th neurologist who thinks I do not have any sort of TN ("Tn is only on one side of face, pain is ALWAYS a 10" blah blah...)

What are everyone's opinions on this? I greatly appreciate any answers!!

chech out the group on TN2. you may find a number of people with similar symptoms & help you find more answers. I also had a neurologist who told me it could not be TN b/c it was on both sides…

About 20% of our membership have bilateral pain, and 40% have a mixture of Type I (electric shock) and Type 2 (constant burning, throbbing) trigeminal pain.

Lauren has a doctor or neuro ever suggested starting an anticonvulsant for your pain?
Aside from our descriptions, having success ( pain relief) with an anticonvulsant is also a diagnostic tool for them.
I have bilateral TN, but never at the same time. I’ve been told many times over the years I can’t have TN, despite the proof of all diagnostic factors and the way my pain presents.
No compressions were ever seen on my MRIs,
I recently had an MVD on my type 2 side ( the second side of my face to present, the first was my right side as type 1 TN) 3 compressions were found.
I am living pain free right now.

You know your body best, my theory is who cares what the doctors call it or don’t call it, you need medication to treat your pain.
That’s most important.
I wish you strength on this journey, hope you are getting relief…(( hugs )) Mimi

A few years ago my TN pain got much worse. Nothing helped. My jaw pain was so bad that I had trouble chewing. I got no where with my old doctors and set about to find a new one. I made an appointment to see if the new doc and I got along figuring that maybe I am difficult. Well, he asked me what my concerns were. I told him that my big concern was the unexplained loss in weight (over 20% in a few weeks). He ordered a blood test to check my SED rate which was elevated. I was diagnosed with pollymyalgia rheumatica and big cell arteritis after having a bilateral temporal artery biopsy. These are auto-immune. After proper treatment my TN is back to being manageable.

Are you about 50ish? Have you ever had your SED rate checked? PMR symptoms include neck pain, severe jaw pain, even worse ear pain...I have had TN since early childhood and PMR made everything much worse. Big cell arteritus can cause blindness by depositing placque in the temporal arteries. Dr. Patterson is my hero. Nancy