I'm a 46 year old female recently diagnosed with TN. I've been dealing with almost constant pain (with shooting pain intermingled) since September, which I guess puts me in the atypical catergory of TN. My pain started on and off a couple years ago, mainly just in my right ear. I kept thinking I had an infection but then the doctor could not find a problem. As of September, the pain spread up to my temple and right eye. I believe it's in all three branches as it hurts from my eye down to my chin. The "epicenters" seem to be my eye and my ear. I am now starting to get twinges of pain in my left ear. This is basically how it all started on the right side. Can the pain shoot around to the opposite side or should I prepare myself for possible bilateral TN? I'm up to taking Trileptal twice a day and am supposed to work up to 4 pills (if I can stay awake long enough to do that! :0) ) The Trileptal is not helping much yet but I know it takes a while. I appreciate the fact that forums like this exist. Thanks.
Hi Monnie – welcome and I'm sorry you are going through this and are joining us in the world of TN. I recommend purchasing and reading the book "Striking Back". I find it to be the Bible on TN and all things facial pain. One thing I learned is that sometimes there is a "warming up" period with TN, which sounds like what you experienced (I did as well). My pain was off an on for a year and a half and then came back last June and hasn't completely gone away. If you check out where the 3 branches of the trigeminal nerve go, the top or first branch is really up over the eye and more the forehead area. I suffer from pain from the 2nd and 3rd branch so really my eye socket on down to my jaw. Some people do feel TN on both sides of the face. The nerve is the largest of the cranial nerves and does come around on both sides — like 3 fingers wrapping around both sides of your face. I take Tegretol and it took several months to get on the "right" amount and feel more functional — but I hear you on the exhaustion. It's crappy. I drink a lot of coffee and try to stay really active. Make sure you work out and stay physically. That really helps with energy levels and just feeling good all mentally and physically — the drugs are so hard on our bodies. Hope that helps you. Cheers, Jessica
Yes, the pain can move around, but there’s no way to predict. You can also go into remission. We all seem to have similarities as well as differences.
I recommend taking it one day at a time and not worrying about what the pain may or may not do. Just focus on what’s going on each day.
There are actually TWO trigeminal nerves, Monnie. One for each side of the face. About 5% of all TN patients have pain on both sides, usually at different times or with a somewhat different character or distribution on the two sides.
This and many other questions about TN is addressed in our Face Pain Info tab and sub-tabs, in the page menu above.
Regards, Red