A-typical facial pain and Trigeminal Neuralgia

Posts: 1
Joined: 2008-09-03

Is there anyone here familiar with facial pain; trigeminal neuralgia and/or Anesthesia Dolorosia.  I've suffered for 9 years and detoxed once off oxycontin only to find I had to take it.  Soon, I will try again because I am finding pain relief in an anxiety medication.  I wonder if it makes the nerves stop firing in the face.  Thanks, any advice is welcome.





Posts: 28
Joined: 2008-08-18
Trigeminal neuralgia

Hello fotogal, it is very unfortunate that you are suffering from this HORRIBLE pain. I have had this for 3 years now. Specialist to specialist. It all started while I was in paramedic school and I was in one of my lessons in front of everyone and got an "electric shock" like pain in my left eye. Everyone was like are you okay? It was kind of embarrassing, seeing as how I didn't know what in the world that was. I went on with my day because the pain only lasted for a couple of seconds. And as the months went on, the attacks started to last longer, and longer, and longer. Until I coundn't take it anymore. I had never experienced this kind of excruciating pain. It even shot down to the left side of my nose, my left jaw line, and down behind my left ear. I finally spoke with my doctor about it. I was sent to an ENT (Ear, Nose, and Throat specialist) who said he thought it was TN/ tic de larue(an excruciatingly painful shock like pain- similar to TN or sometimes, people see it as two of the same). So then I got a referral to Shands, in FL, and was put on numerous , not all at the same time, trials one at a time to see if one worked for me or not, and all kinds of diagnostic tests. The medications included, Lyrica, Tegretol, Neurontin (horrible side effects for me- I felt groggy, gained wait almost 10 lbs, which is the main reason why I stopped)(I did get some releif after a few months of being on Neurontin, but the side effects over-weighed the results), pain medication (the pain meds mostly just helped me go to sleep), etc. Nothing would relieve this kind of pain. Once I even had to call an E-VAC, (my instructor at the time, was the one who was first on scene).. I've heard this is the worst pain known to mankind. Finally after, all the trial and error, I ended up back at my ENT's office, and as the last resort, he said I'll go ahead and operate on you. There is a 40% chance this will help your situation. The operation wasn't just for the pain, I do have chronic sinus problems too. The surgery went better than expected. My sinus canals turned out to be very small, a deviated septum.....I am still recovering but I am not suffering daily attacks as I was. It was weird, it was like the attacks would come at the same time every day, around 3:30-4:30 P.M. and last for hours of electric shock like pain, no matter where I was or what I was doing. My heart goes out to you to find a solution to this ungodly pain. I still have issues with my spine from the birth of daughter and meningitis, surgery, bulging discs, and so on, ( no more sob stories) hehe, but there will be an answer to every question and a solution to every problem, just don't give up on looking for the right medicine to help you. Maybe the anti-anxiety medications relax the trigeminal nerve, there are three branches, have you figured out which one is triggered? Or is it all three branches?