I’ve had TN for about 5 yrs now and experience both types of pain. It has been soley on the left side. I’m on 600mg of trileptal 3x a day and baclofen 10mgs 2x a day. The meds work pretty well although i have an almost constant ear ache like pain and an occasional flare up. I do have zombie like effects that I’ve learned to deal with. About 3 or 4 days ago the pain completely stopped on the left side and flared up intensely on the right. It last about 2 days and was like the meds weren’t helping at all. It went down about a day ago but now i have pain on both sides, sometimes alternating and sometimes both at once. I recently decided to have MVD in the new yr and can’t get in to see my neurologist until the first wk of January. I’m looking for advice from anyone else whos had the pain switch like that and can tell me how it might affect my surgery. 3 wks is a long time to wait for answers especially when you’re in pain…and yes I’m on a list to try and get in sooner…any advice is appreciated…
I have bilateral TN, with both types of pain also. My right side was affected for a long time, and while I was on my maximum dosage of gabapentin, my I started to experience pains on the left also. I’m not sure that the pain jumps from side to side, as the nerves are independent of each other. About a month after the left side pain started, and had a consult for MVD, and the doctor had me undergo a high resolution MRI that showed compressions on BOTH sides. I elected to have MVD on the right side first, and also on the left side several months later.
Bilateral TN may not be as rare as it was thought to be, and you , unfortunately , could have it. I hope you can get to see your doctor sooner, and that you find some relief.
Please feel free to ask my any questions, I am happy to share my experience.
Best
Christine
Christine has offered good input, I think. When I analyzed the demographics at this site, I learned that up to 20% of the membership have bilateral pain, most of them with the same pattern you describe (sometimes simultaneous, sometimes at different times on the two sides, both emerging on one side first, and later seeming to "switch" sides). MVD can address only one side at a time. Over the years, I've talked with a good many patients who have had MVD at different times on both sides.
Go in Peace and Power
Red