Confusing TN diagnosis

hi there,
I started out experiencing zaps in my temple which quickly gave way to a sore aching pain in my right jaw with occasional pain in my left and sometimes lower jaw.
My neurologist told me I have tn2 (Stanford neurologist). The UCSF TN clinic diagnosed me with facial migraines and the Center for Orofacial Pain at UCSF diagnosed me as having TMJ.
So now the pain is getting worse and my tongue/jaw feel weak! is this a symptom of TN? I never get the flashes of pain but I feel as though I have been punched in the face.
In addition to weakness, sometimes i drool from the side of my face. Also when i brush if i push on my brush hard enough on my right gum i feel the pain.
These do not sound like TN, does anyone have an idea?

Thanks

H

I too have pain in my right side of jaw. It feels like someone has a vice grip on my teeth at times. No flashes of pain. My tongue hurts from time to time and sometimes I get a pain on roof of mouth. This week with the weather we have my ear feels like it has water in it and hurts at times. Mine started almost 2 years ago with my lip being very sensitive and the side of my ear by temple being sensitive to touch as well. When I touched both of them my jaw would hurt. I can feel when my face is swollen as if I had just come back from dentist and I slur my words at time. I feel lucky that this is the pain I have at this time but wonder about the future. I wish you the best.

I had similar symptoms for years and was variously diagnosed with tn and tmj. Eventually I found a top maxillofacial surgeon who X-rayed my jaw and immediately found that the cartilage jaw disc was severely out of place.

He cleaned out the debris from the joint so that the muscles could pull the disc back again, an easy procedure under local anaesthetic. He explained that the pain was caused by the muscles working in vain.

However I had months of very severe pain until the disc was back in place. It took so long because the problem had been there for years. Even now it can go “out” as the muscles are overstretched like a rubber band. It happened recently when I yawned too wide. However I can eat with much less pain now.

Thank you guys for your replies.
@Scared do you have any diagnosis yet? have you seen any neurologists? what have they said ?

@Pat_G thank you for your reply. I think i may have something similar, but what makes me question a musculoskeletal source for the pain (as is the case for you) is that the pain sometimes moves around, sometimes it is on the left, sometimes moves around the molars, sometimes its in the cheekbones etc. I do have arthritis in several of my joints so if it hadnt been for the unpredictable locations of the pain i would have come to the same conclusion (disc/cartilage issues). What do you think?

H

I was lucky in a way. After calling my ENT and explaining my symptoms he made an appointment with a Neuro within 1 month of the start of symptoms. The Neuro diagnosed me. I told him I was ok with the pain and did not need meds. He suggested that I look TN up on line and set up another appointment with him. I went back within the month and he scheduled a MRI. The week after that I went to see him again and he said everything was clear on the MRI and felt my TN symptoms were caused by a virus. He said he could give me meds but I said no at this time. I go for acupuncture and feel it is controlled at this time.

Haach, yes my pain did move around depending on which muscles were straining to pull the disc…cheek, molars, tongue, neck, chin, temple, ear. It still happens but to a much milder degree. At its worst I couldn’t even speak and could barely eat or drink.

I’ve been lucky that it hasn’t much affected my other side although sometimes it has felt under strain. The consultant asked if the other side was affected so obviously it does happen.

Obviously you may have a different pattern so it’s important that you find someone to give the right diagnosis. Are you able to get an X-Ray of your jaw to rule out a disc problem?

Only those of us who have been there can understand the stress anxiety and pain involved. I hope that you get some help.

@Scared thank you for the information and im glad you got a timely diagnosis and that your symptoms are under control! i should try acupuncture also.

@Pat_G ah ok, that is interesting, I should go back to the Oral and Maxillofacial Surgery center in UCSF and ask for an xray. I did get an xray by my dentist and also i did have a high resolution contrast MRI of my skull base (which did say there is close proximity of trigeminal nerve and the artery, but that may not be sufficient for a definite diagnosis). Anyways i will ask them to reconsider a joint problem.
The issue is that my symptoms are so different from classic TN, otherwise i would have resigned myself to a TN diagnosis.

Thanks

H