Hi Mrs. NolaVette,
I have trigeminal neuropathy (not neuralgia) on one side of my face that is a sequelae from a severe eye injury that I had 8 yrs ago. The majority of my pain is in and behind my eye. And it is a result of damage to other nerves and tissue behind my eye caused by the injury, in addition to 2 autoimmune eye conditions that I have -- both of which cause pain in and around the eye. Like Dixie said, I can COMPLETELY relate to wanting to rip my eye out, because the pain is so severe...
However, my ophthalmic branch of trigeminal nerve is also affected where it emerges from the skull behind the eye. And my trigeminal neuropathy is likely due both to direct damage from the injury, and compression secondary to retrobulbar inflammation from my autoimmune diseases. It causes pain to radiate from my eye across most of the affected side of my face (forehead, over the ear/nose, and down to the upper lip). And it is especially intense when my eye pain is at it's worst.
I have not found any medications (nerve medications, opioids, etc) to be especially helpful with my pain. Hydromorphone has helped me some, but nothing earth-shaking. I do have a trigeminal nerve stimulator (same device as a spinal cord stimulator, except with leads on the ophthalmic branches of the trigeminal nerve, instead of spinal nerves). The stimulator has helped me some with the trigeminal neuropathy pain (less so with the main source of my pain, which is behind the eye). However, it also unfortunately tends to cause local muscle contractions, which limit it's use. It was more helpful to me initially, but has become less effective over time. I'm not sure if it is just because my body has "gotten used to" the stimulation, or because the muscle contractions are worse due to scar tissue formation or something of the like. I suspect that perhaps it is a bit of both.
While the stimulator that I have was primarily implanted for eye pain, I do know that they are used for trigeminal neuralgia with some regularity. Actually, the neurosurgeon who implanted mine is a TN expert, who I was referred to by my neurologist. I just mention it, because perhaps it may be something to look into down the road (not a first line treatment by any means). The one thing about
nerve stimulators is that they are very personal experiences. What works one person doesn't always work for another, even if they have the exact same disease. It is something that you actually have to try before you will know whether or not it will be of any help to you. For me it was a last resort...a Hail Mary, if you will -- something that in my case, was completely experimental, and was only pursued only after exhausting ALL other less invasive options (medications, nerve blocks, etc). And it has helped, even though it is not as effective as it once was.
Unfortunately, I don't have much more to add. I'm sorry that you are suffering from this horrible disease. Although my condition is not exactly the same, I do know how awful chronic, severe facial pain can be. I hope that you are able to find some relief. If I were you, I'd be looking not just for a neurologist/neurosurgeon, but one that is particular familiar with TN. As it is a complex disease, and can be very difficult to treat. Best of luck to you!
Post Edited (skeye) : 1/2/2015 11:07:44 PM (GMT-7)