I am still waiting an actual diagnosis -- I started having problems almost a year ago after being a very small dose of prednisone (for acne) for a whopping FOUR days. Right after I stopped it -- the pain in my face began. It is on both sides of my face and all three quadrants and ALL the time *around my eyes, around my nose, in my top/bottom teeth, jaws and forehead* I am going in a few days to see another neurologist with the Mayfield clinic who specializes in facial pain (unlike my present nuero who doesn't seem to know much about it). I am currently on Cymbalta 60mg and 100mg of tegretol. My questions are:
1) is there a difference in ATN (type II) and Trigeminal nueropathic pain -- if so, what is it?
2) Are there surgical procedures for this type of pain? From what I've been reading, it doesn't sound like it.
3) My pain is definitely made worse with physical movement (facial expressions, talking, moving, etc) and this may sound crazy but I feel like it gets worse just from THINKING -- like if I am trying to figure something out or have to actually think about something -- I notice the pain gets a little worse, like the smallest amount of stress spikes it. Its so strange...am I the only one to notice this?
you need to find the BEST neurosurgeon for MVD. Can make your pain much lower with ATN. I'm not sure what the difference is for Trigeminal neuropathic pain. Somebody will chime in.
But for today, you can call your primary and ask for a prescription called in for lidocaine patches for face - can help many!
KC is correct about the MVD, from everything I've read 65% of those (like myself) with ATN come out of the MVD with no pain and the even those still with pain say it did help lower the pain to a livable level. The most important thing right now is to find a doctor who understands TN and the benefits of the MVD. Good luck
I have bilateral ATN, all three branches. I hs MVD on both sides this year, right in January and left in October. The surgery on the right side stopped the shocks, but since I had it intermittently and undiagnosed for almost 10 years, it did not stop the burning boring pain. The nerve was too damaged to recover, so eight months later, my surgeon suggested a peripheral nerve stimulator implant. That is working very well to control my pain.
I had only had ATN on the left for one year before I had MVD. That was on October 14 th, and I am happy to say I am pain free, and no longer take medication. (I was taking 2400 mg of Gabapentin per day.)
Like others have said, it is important you get to a TN expert. I traveled from Georgia to NY for my surgeon, and would do it again without hesitation.
Best of luck
Christine
Thank you all for the responses. My neurologist right now doesn't even agree that their are two types of TN so I knew that I wouldn't be getting far with him. The Mayfield Clinic in Cincinnati do however specialize in it and accepted my case so I will be going to see a neuro through them next week. I will definitely bring up all of this and hopefully they have more options for me than just meds. Right now I take Cymbalta 60mg and Tegretol 100mg...I know 100mg is nothing but the tegretol makes me so tired that I am scared to increase it. I have a three year old and between the pain AND being tired...its a war. To me a good day is if the pain isn't making me cry...which I haven't been for a couple of weeks now. Thank you all again for the feedback!