Just found out what my mystery pain in my lower jaw is (after seeing 4 doctors), tried Tegretol for 2 weeks and then started breaking thru with pain, switched to Lyrica, up to 75mg 2x a day and still taking ibuprofen round the clock to manage pain....broke thru that at 1:30am and was up til 4:30am before getting back to sleep...anyone have any ideas on more pain management?
Hi!
Sorry to hear you are having trouble getting this under control-- how high of a dose did you take of the tegretol?? People often have to up the dose until they find a level that stops the break through pain. Lots of other meds are used in combo with tegretol or alone. Everyone is different as far as what works. Many people have long remissions--especially at the beginning of this nasty ailment. I was just diagnosed last June and the tegretol got me into a remission-- I am off meds right now. Hope that happens for you, too!!
Hi,
Sorry you are going through this. I have lower jaw pain affecting my teeth on the lower left side. I take Amitriptyline.
There are lots of meds to try. And everyone is different. Keep reading, learning and trying. Don't forget that most of the meds used do take some time to start working.
Good luck to you
How much Tegretol were you on? I had to titrate up until I got a dose that worked. I was at 800mg. With success. Then I started to have breakthrough pain and they added in neurontin. This also helped. I find Tegretol helpful you may need to give it more time and find the right level.
Call dr… Ask them to call in lidocaine face patches… Cut them up into area for your pain… Can last up to 12 hours.! There are generic now…pay less!
Secondly, learn allllll you can, read, ask, learn, repeat.
Get the book STRIKING BACK. By dr ken casey
The more you know, the better your outcome can be… Even though there is no cure, there is hope, and remissions, and support!
I'd have to check my dosage on the bottle but I was having major side effects on the starting low dosage....unsafe to drive my hour long commute and super spacy to the point that everyone at work knew I was doped up....with the Lyrica no side effects but not working yet!
tacocat said:
Hi!
Sorry to hear you are having trouble getting this under control-- how high of a dose did you take of the tegretol?? People often have to up the dose until they find a level that stops the break through pain. Lots of other meds are used in combo with tegretol or alone. Everyone is different as far as what works. Many people have long remissions--especially at the beginning of this nasty ailment. I was just diagnosed last June and the tegretol got me into a remission-- I am off meds right now. Hope that happens for you, too!!
That's what my dr just told me, to be patient with the meds, but jeez that's easy to say when you don't have pain that just makes me want to take a hatchet to the side of my jaw! He told me to set my alarm in the middle of the night to get up and take ibuprofen before the pain gets away from me...will try that tonight...
justjane37 said:
Hi,
Sorry you are going through this. I have lower jaw pain affecting my teeth on the lower left side. I take Amitriptyline.
There are lots of meds to try. And everyone is different. Keep reading, learning and trying. Don't forget that most of the meds used do take some time to start working.
Good luck to you
I agree with what others have said in reference to Tegretol. It can take much time and side effects to find your therapeutic dose, and sometimes a switch to extended release Tegretol to get adequate pain management.
Usually once your body adjusts the side effects go away or are quite manageable.
Of course we’re all different and react differently BUT considering that Tegretol is still considered the number #1 med for classic TN it’s worth giving it a really good chance.
Same goes with all meds for TN, give each one a good chance before you switch. Learn how each one works and understand it takes our bodies time to adjust and the levels to reach our individual pain management/ therapeutic state.
Pain management is achievable and remissions do occur for lengthy periods so it’s really important to wean off meds once a period of pain management is achieved for at least 6 weeks.
Not everyone experiences remissions ( no pain, no meds) but many, many do. For anywhere from weeks to up to 10 years!!
Turtlebug, read as much as you can so you can make informed choices, as you’ll soon find that most medical professionals aren’t as knowledgable about TN as we the patients are.
Please start by reading the Discussion entitled " Everyone with TN should read this" ( on the main page, or under the discussion list.
It’s a comprehensive up to date education on TN.
Also check out our Face Pain info pages.
Hope you find relief soon. (( hugs )) Mimi
I checked my pill bottle and I was taking 400mg of Tegretol every 12 hours. After 2 weeks dr switched me to Lyrica and I don't think it's working at all......