Hello, all - this exchange has been so helpful to me. I was suffering with facial pain after a horrible dental experience that led to a prolonged bone graft/implant placement/crown setting over 18 months instead of the usual 6-8 because of COVID. I don't remember how I happened upon TMS, but it was after the dentist told me there was clinically no reason for me to be experiencing pain and I was just an overly sensitive middle-aged woman imagining the pain (paraphrasing - he didn't use those exact words). I certainly have the TMS personality traits and recognize now I have experienced other TMS issues in the past that immediately resolved once the stressor was eliminated. So, I was convinced this was TMS showing up again - but then I had an MRI to rule out a tumor or necrosis and a vein was found near the nerve root that was "suspicious" and given my facial pain in the TN area of the face I was given the Trigeminal Neuralgia diagnosis. The unconfirmed but "possible nerve compression phenomenon" set my doubt in motion. How can I have TMS if they found an "anatomical" cause of my pain? This thread is a lifeline! So far I have not felt the electric shock like pain usually associated with TN - just have a constant ache which is sometimes accompanied by pins/needles sensation or itching in my face or jaw. I have been put on Carbamazepine and learned I am allergic to it. I was then put on Gabapentin and as they kept increasing the dose because my pain wasn't impacted by it at all but I started developing pins/needles in my arms/hands and legs/feet. So they lowered my dose and then added Bacolfen - which I am currently still taking. My pain has not changed at all...unless I am gardening or doing something I enjoy and am distracted. Then I don't notice the pain at all. (Classic TMS, right?) I was feeling like my body was rejecting the meds because I don't really need them. Then the MRI. Then I felt like I needed to stay the course with the prescribed meds because the doctors have told me this pain will just get worse over time and in my case MVD surgery is only successful 50% of the time...and "successful" may mean a best-case reduction of pain by 50%. Have the doctors ever considered the suicide factor of this disease is due to the fact they paint such a horrid picture of the life to come they put the patient in a spiral of depression? Thank goodness for the internet so I can be exposed to these additional points of view...otherwise I don't think I would be able to get out of bed. Not because of the pain - but because of "what's the point" thinking given the future outlined for me. Although they did try to soften that at the end with a "but every patient is different" and an offhanded comment about some patients do go into remission with or without medication. So - with some additional resources found here (Dr. Hanscom and Dr. Weekes) I am going to continue to work at getting to root cause so I can resolve the pain and will have a conversation with my physician about eliminating these drugs since they aren't work and increasing them has only caused side-effects that I feel are worse experiences than the pain itself. I am working on trusting my body/my belief that like a bulging disk found on the MRI a suspicious vein near the nerve root doesn't mean its the actual cause of the pain. It is just a finding the physicians can use to halt their investigation of the source of pain - it is the evidence needed to give me a definitive medical answer. I have nothing life-threatening. I have TMS that is presenting as TN. Grateful to know I am not alone. Grateful to know there may be some wine in my future! ;-)
It may have been temporarily irritated there but structural damage seems unlikely because of the TMS pattern.