I finally got in to see my doctor and not a partner. She spoke with Neurology and upped my Carbamazepine to 900 mg per day, 300 am, 300 mid-day and 300 evening. They have also given me Baclofen for when I get a bad attack. I am hoping this is enough to keep it away. Today I was able to brush my teeth and only have a few twinges when I forget and touch my side of my face. In the past the highest I was on was 600mg, before the pain stopped for the 6 months. Does it come back worse each time. Or does your body get use to a dose and it doesn't work as well.
Has anyone taken Baclofen? My doctor said to take it twice a day when needed, but does it work that fast.
My experience with remissions and exacerbations is that no 2 are the same. I have gone up to 6-7 months with relatively no pain and then had a severe bout that will last 3-4 months and then the next year it is very different. I would have to say that over the 6 or 7 years that I experienced TN pain, prior to having it corrected with mvd surgery this July, that the last few episodes seemed to intensify and become worse with each new episode. My last one lasted 4 months. Strangely I got relief by leaning my neck and head back over the headrest of a chair almost like a form of traction which must have in some way put enough stretch on the spinal cord that is was able to slightly move the trigeminal nerve away from the artery for an instant. At any rate, I would get immediate relief. I have had no experience with baclofen but I wish my doctor would have prescribed it for me to try! I'm glad to hear you are getting some relief with the dosage increase of carbamazepine.
Karen,
Baclofen doesn’t work on an “as needed” basis.
It needs to build in your system and be taken daily …I’m not a doctor but I would speak to yours or your pharmacist about this. I’ve never heard or read that it can be taken as needed…
Baclofen works as a booster to Tegretol, increasing its efficacy.
Hope you’re feeling better soon, Mimi
I was taking 1200 mg of Carbamazepine TID and still had breakthrough pain, not to mention the loss of cognitive clarity. Added Trileptal 150mg BID and had immediate relief and was able to weened myself off the Carbamazepine completely with no noticeable pain for two weeks. It may have coincided with a remission but I am not interested in meds that only mask the pain and continue to damage the trigeminal nerve. I have set the wheels in motion for MVD surgery.