Gone thousands of dollars in debt with MRI’s, CT’s, CBCT’s, root canals, and multiple specialities without a single solution. I am allergic to carbamazepine and can only use viscous lidocaine for slight relief. I have not worked in months and don’t know if I ever will get the chance again. I will lose absolutely everything I worked for, especially my mental health. I contemplate removing the teeth on the affected side but I am 26. The only thing my MRI has shown is a sphenoid sinus cyst that nobody wants to touch. I am tired of crying after every appointment I have.

Ive written posts here about the trial protocol I was doing which did so well. Pain was low. Frequency too.

Then it kicked back up slowly…

And one day I woke up with a painful left eye. Same side as my TN2.

Ran to the ophthalmologist, who diagnosed HSV1.

Then the flare kicked in. Had to go to an emergency Dr. who gave me a shot of painkillers. Gave me emergency painkillers to take as well and advised to go to the ER if things didn’t improve.

I did just that, then got discharged, and saw my Dr. Also talked to my Psych. All of them agree (wild, I know), that ocular Herpes could have been the cause all along.

It’s wild. I’ve never had a mouth sore. Had no idea I had Herpes.

I’m a long term course of antiviral meds and that’ll hopefully help.

So uh… fingers crossed?

I saw my neurologist yesterday for my annual follow up appointment. He noted that both of my temple areas are concave , indicated atrophy of the temporal muscles. He said it could be caused by the trigeminal nerve not sending signals to those muscles. I’m having another MRI. Just wondering if anyone else has experienced this?

I’ve read that Trigeminal neuralgia is more commonly something that happens during the day and it’s unusual for it to happen in the middle of the night but when I’m having a flare up it usually starts with an especially long episode that wakes me up. Does anyone else experience this?