Before I introduce myself, I want to say thanks - I’ve been lurking for a bit, and have found so much help and encouragement in the posts. So thank you!
This has gotten really long, so here’s the executive summary: I have TN1. I’m on Tegretol XR and am scheduled for internal neurolysis surgery at OHSU in April. I’m married, have two cats and a dog, and work in administration at a university.
My “development to diagnosis” story is typical. It showed up almost a year ago while I was eating a sandwich, a sudden sharp pain. I continued to have pain when eating, etc, so assumed I had broken a tooth or a filling. So off to the dentist, who did x-rays and assured me that my teeth were fine. He thought it might be caused by seasonal allergies (note that I live in Oregon - so much blooms here in the Spring that they should just put allergy meds in the water). I was thrilled that I didn’t have a broken tooth or filling…
The short version of the rest: dentist, doctor, antibiotics, two month remission, back with a vengeance, doctor, NSAIDs, doctor, way strong antibiotics, doctor, diagnosis.
My main trigger is temperature, especially cold food/drink. Chewing, talking, etc… the usual. My attacks last longer than the “few seconds to a few minutes” - can last up to two hours. I think it might be multiple attacks in a row / building on each other. Happens in all three branches of the nerve, the middle one is the worst. Like so many whose posts I’ve read, it made me despair - what if it didn’t go away? I can’t think or move, let alone live any kind of life, in that type of pain.
I’ve been on Tegretol since diagnosis. It mostly controls the pain, but has given me a laundry list of side effects. It stopped working as well over the last couple of months, but I haven’t increased the dose - while the pain has gone up, the brain fog has decreased, and I really hated feeling like a zombie.
The super-duper-high-res-3D-MRI-and-MRA done by OHSU does not show any compression. It shows a vessel that dips down and maybe grazes the nerve before swinging back up. So that’s why I’m having internal neurolysis.
As to why I’m having surgery this soon, before trying other meds, etc… I’m 39. I’m approaching this with the expectation that I’ll live another 50 years and that the TN isn’t going to go away. So I have to plan for 50 years of treatment. The common factor in TN treatments is that they usually don’t work for a long time, so I will probably have to use them all at some point. I’m thinking of this sorta like a game of tetris, with each treatment being a block and the screen being my lifespan. I know, I know, people make plans and God laughs. But not making a plan doesn’t seem any better…
Anyway, of the treatments, the brain surgery one is most likely to be off the table in my future - it has the most pieces that need to align for it to be a viable option, and those pieces are all aligned in my life right now (decent health insurance, a job with enough sick leave etc, supportive coworkers, good neurosurgeon, good health, and young enough that surgery isn’t risky). And my husband works for himself, from home, so is able to care for me afterwards.
So that’s the long
and short of it. Thank you again, for this site and the posts on it. I felt very alone, having this at my age, but this site has helped immensely.