My neurologist has tried two procedures on me within the last 6 months. First was the Botox injections. I found that it helped on one nerve branch (my forehead) but not the others. A few weeks ago he took a catheter, put it up my nose and dropped liquid lidocaine on a ganglion nerve branch. It numbed part of my throat and nose when it was done (which really sucked). The procedure was not very pleasant but definitely tolerable. More uncomfortable because of the head tilting back and the liquid running down the back of your throat a little. Anyway, he did the procedure and started backing off my trileptal at the same time. Big mistake. The results I had from the lidocaine seemed to be going pretty well. I was very happy with it because I saw my pain level drop 1 point initially and he said it could be a couple of days before I saw any good results. Because I started going off the trileptal though, I had a big backslide to the point where I had to call him and he put me back on it. He is going to do the procedure again without taking away any oral meds and see if we can get a better and longer result. I am very excited about it because I started to see some results initially! I will try to keep you updated and if you are seeing your doctor anytime soon, ask him/her about it!
I have had good luck with botox also. It has taken me a year to perfect the injection sites to relieve my pain. I have my masticator muscles (chewing muscles) and muscles just infront of top of my ears,, above my ears, back of head near neck and my neck muscles. I have the best pain free days in years since perfecting this. .I have not needed pain pills for a while. Ive tried them all. Percocet was the only thing that took away the pain prior to getting Botox injections. Now I have not needed Percocet for a while.
I had nerve pain from shingles that was in my throat and ears.Lidocaine lozenges helped . even over the counter cepacol helped. Then I was dx with chronic form of shingles . So I take valtrex daily. It has decreased the episodes of severe throat pain.
I also got a cream for pain inbetween the botox injections. It has bubivicaine clonidine ketemine and few other things in it. It is compounded by a pharmacy for me. I got the prescription from a pain clinic at Tuffts Medical Center Boston. The cream works great for any breakthrough pain I get and it does not affect your thinking like pain pills. Invisible too.
Update: I received my Botox injections today and the ganglion block. I can't tell a change yet and I can't get rid of the nasty taste right now but I am very hopeful! I have gone back to my previous dosage on the Trileptal so this time I should be able to see the full effect. He did both sides of my nose for the block because he said sometimes the nerves crosswire in the brain and he is trying to give me as much relief as possible. (Did I mention how much I love my neurologist? He is amazing and truly listens to what is going on!) I asked him to write down the name of the actual block also. It is a Sphenopalatine Ganglion Block. I will continue to post as I see or don't see results!