Hello, my name is Lidia. I was diagnosed this week with TN. This has been a painful few months. I have been diagnosed over and over with an ear infection. Finally, I got some answers this week. After reading all of your stories, it seems to be a correct diagnosis. I have pain 24/7, to the point I don't want to eat, drink, talk, etc. This is the worst pain I have ever encountered. Mine started with numbness in the back of my head when I would lay on my back and sleep, prgoressively got worse and moved to my jaw/cheek area. I was given Caramapezine. I had been taking Percocet (from a previous surgery) at night to be able to rest, it has not helped. I can't sleep! Mine seems to be worse at night. My physician has instructed me to take the Carbamapezine for 4 weeks. She said I should give it at least 2 weeks to start working. I cannot handle this pain. It NEVER goes away. Can anyone suggest anything for relief? Also, I have been told it may be from when I had my wisdom teeth taken out a little over a year ago?????
For immidate possible relief - get a prescription called in for some lidocaine mouthwash - or for liocaine cream/patches topical
Klonopin is used to help calm the nerves, stress and get some rest - but perhaps not deep sleep
Narcotics sometimes kill a large percentage of the pain - but not all of it
Demand your dr. give you something to sleep and something for the pain right NOW -- cause it takes a couple of weeks for meds to kick in.
Get the book Striking Back by Dr. Ken Casey !!!!!
Thanks Kc Dancer Kc...I am awaiting a call back from my physician. My pain is a constant 24/7 burning with frequent shocks. The meds the doctor prescribed make me feel like I am losing my mind. It's like I can't remember what i am trying to say.
Also...is swelling in the jaw line normal?
Hi JLT,
Welcome! Although sorry to hear about your diagnosis.
When I first started on carbamazepine, it took a few weeks and then my doctor switched me to the slow release version which worked almost immediately.
I also had instructions to increase at certain intervals if it wasn’t controlling the pain. Unfortunately it’s trial and error but eventually the drowsiness and other side effects go away and the pain can be managed.Sometimes it takes different med combos.
I hope you get to find some relief soon!!
I have found that a heating pad placed where the pain is tends to relieve some of the pain , at the very least it takes the edge off.
Make sure you discuss with your doctor the ability to call her when your pain is bad so that you can increase the meds or start something new. You shouldn’t have to wait to get into see them.
Have a plan with them ahead of time.
I agree with KC you should ask for something to help you sleep.
((hugs)) Mimi
the main med side effect is brain FOG ---
and some people do experience swelling