I have MS and have been dx with Trigeminal neuralgia originally on the right side. I take tegretol and self adjust based on attacks. I get a pre warning sign of a spot of pain before it gets bad. I use narcs if I want to amputate my face.
Last week I had an attack on the left side. My question is how many of you have it on both sides and what the heck am I going to do. I am just so down and done with pain.
I also have Psoariatic arthritis and MS and can normally manage not too bad but this is doing me in.
When MS is confirmed, it is possible that the face pain you are dealing with is best characterized as "symptomatic trigeminal pain" from MS lesions, rather than neuralgia. The treatment protocols for this sort of thing tend to concentrate on symptom management. If you haven't been tried on one of the tri-cyclic antidepressant drugs, then it might be a good idea to discuss Amitriptyline and Nortriptyline with your prescribing physician. This class of drugs has a recognized cross-over effect against neuropathic pain, and is frequently prescribed for atypical forms of TN.
In the demographics study we did here on Living With TN, among 1800+ members whose profiles we evaluated, possibly as many as 20% reported bilateral pain. Feel free to read in greater depth in the "Who Gets TN" sub-tab of our Face Pain Info tab.
go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst and Moderator, LWTN
My mom has TN1 and MS. It is all about symptom management with her. I think Gabapentin and Tegretol worked for her. I have bilateral ATN (but not MS) and have taken Amitriptyline and Nortriptyline. My mom is currently in remission. Her TN has come and gone quite a few times. I have had remissions as well.