Living With Facial Pain

Taking prednisone when their tegretol is not working?

I am flaring big time. Can’t put any fluids in my mouth. Dr. Prescribed short term prednisone. My neurologist wants me to switch off of tegretol. To Oxcarb(Trileptal) I don’t suffer from bipolar. yet my trigeminal neuralgia is out of control after about 20yrs.
Would love to hear what other drugs has been used for trigeminal neuralgia when
Tregretol does not seem to work any more. Thank you Hanna

Hello Hanna,

You need to try Lyrica for daytime relief. Ativan will help you in the evening to go to sleep.

I have TN2 from a top molar being pulled. The dentist messed me up.

Talk to your doctor about these two drugs. The way I look at the kind of pain we deal with is I would rather feel as best I can while I am alive. If these drugs shorten my life that is fine with me.

My love and prayers for you.

May be an addition of gabapentin? Check with your doctor. Sending healing, restful thoughts your way.

I add Dilatin a few times a day to my Tegretol.

Lyrica did not help me at all .
Venlafaxine 150 mg did help , but gives a lot of sweating and weight gain …
For me, I have a constant dull pain, I’m Always in fear of the next flare up . It’s Always, constantly in the back of my mind .

I hope you find help soon !!!

I’ve had good luck with Trileptal and Baclofan for years. I’m now trying Dilantin because the IV Dilantin worked well for me in the ER for a terrible flare. The Dilantin has to build up to a level so I can’t tell if it’s working yet… but the Trileptal and Baclofen just take the edge off of it. I add a couple of Tramadol from my husband’s meds at night it helps. Try the Trileptal and for flares ask ER for the IV Dilantin. They won’t think you’re drug seeking and it worked for e.

Sorry to hear about your current issues with TN. I was where you were 20 years ago also—exactly the same symptoms. Tried Lyrica, but that wrecked me physically (still have the after effects of that). I’m currently on a large dose of Trileptal (600 mg QID). Eventually the pain subsided, but it was hell getting there.Now if I have any flare ups I take one 10mg valium. Most doctors will not prescribe that because it was once abused. Good luck. Hang Tough

I tried lyrica also terrible medication. Three more days of prednisone. Started oxcarbazepine this morning. 150mg 4 times a day. I was taking 1000mg of carbamazepine a day. Why the neuro did not include some of the carbamazepine.
So i was having major fares and i was not going to er. So i decided after doing alot of reading i need to use some carbamazepine with the oxcarb. til i get use to the oxcarb. So i decided to drop carb. To 300mg a day with the 150mg 4 times a day. No flare since. Crossing my fingers.

Lamactal has helped me. Sometimes you need a Medrol steroid pack more than once. Baclofen helps also.

I’m so sorry to hear abt your flares bc I’ve definitely been there. I am currently taking gabapentin, baclofen and a low dose of amitriptyline.
Fingers crossed that trileptal goes well for u!
Best wishes. xoxo

I did fantastic on trileptal. My pain from ATN lessened within a hour of my first dose.

The Trileptal worked really well for years and then stopped. I’ve been at the ER about once a week lately. I have a new Neurologist that thinks it’s cluster headaches. Why he thinks that I’ll never know. The one thing that does work is oxygen. Not so much the stabbing pain but the burning pain.

Hi Hanna: it seems that MVD and the usual meds are not always working or TN comes back. I have not wanted a surgical solution after gett a deep venous clot after a simple hernia surgery. So, I keep my eye out and try other things.

I am currently trying ActiPatch, a very inexpensive gizmo that you tape to your face in the location of the most significant pain area. It uses very low power radio frequencies to treat pain. It has not been tested in a controlled trial setting on on facial pain, was tested and successful on other pain modalities. The journal article about the clinical trials is in Pain Manag. (2015) 5(6), 413–423. Amazon carries the ActiPatch.

Another approach is reported in the British Dental Journal (BDJ) by Dr. Andrew Carmichael. It involves taking a fat soluble form of Vitamin C (ascorbic palmitate) taken with vegetable or fish oil. His reports are at the BDJ April 2012 (PA and fish oil) and BDJ 2014; 212: 356–357). The amount per dose, I think, is 2 grams ob AP with a table spoon of oil. He stumbled on this by accident when treating folks with Parkinsons with the same material. Amazon carries the ascorbyl palmitate.

Obviously, check with your doc before embarking on a new approach.