I have not posted in awhile...but I bombed on tegretol

Hello to this great support group. I have not posted in awhile but just was so sick on tegretol for awhile. The nausea and vomiting got to me real bad and I am reduced to just 50 mg. 2x. What I believe I am also having is a relapse of TMJ. I had it in my 20's, needed surgery but don't believe I need surgery again. Locked jaw, very plugged up ears, such a heavy feeling in the head and the facial pain continues.

I did find some relief with the ear thing by doing an exercise of plugging my nose and pushing air through my ears to get them to pop. When the barometic pressure changes my jaw locks up and aches like hek. Using moist heat on the right side has helped some with the whole feeling like I have been slapped and helps with achy ears and jaw and that cold feeling I get in my face. Right side is still greater. I know the facial pain is an add on, it is all nerve but I do get the achy spasm of muscles in the jaw and face too. So back to square 1. Do not want to even entertain an alternative drug, have researched them and the side effects will probably get me. Can't seem to tolerate anti-convulsants.

I may be tried on baclofen when I see my pain management doctor in January. I don't know how some of you tolerate the cold winter, here I am in Florida and it is wonderful if it warms up into the 70's or near 80 for the winter here. I do better then. No AC on is a plus.

I have had a few good days lately so I am encouraged. Moist heat, pop my ears and the whole thing does not feel so bad. Also using drops of hard pressed oil with garlic simmered in it for the ear pain.

I am still taking percocet for pain and it is helpful. Also on a low dose of gabapentin, have been on that for years for the neuropathy in my legs from a spinal cord injury. It all helps at times and sometimes it does not so I just go with the knowing that every day is not always a bad day.

Anyone tried lamotrigine, phenytoin, topamax, trileptal, and I did see something about botox being studied to use for this...wish my neuro did that. He does do botox in my neck muscles. He did a muscle in my scalp and it did help for a few days!!

Someone asked about rhizotomy, I read up on this and I had this done at 3 levels of my neck and it did not help me, just made me real sore. I think rhizotomy if it helps is temporary, could cause more pain, there is always so much risk with treating this nerve problem with invasive treatment. Type 2 will respond and Type 1 TN has a much higher success with invasive procedures or surgery. I don't think I fit into either category even if I do have type 2, I just looked at the dx on my last visit to my neuro and it says just atypical facial pain...this thing is treated with meds only.

It is warm and sunny in Florida, got to swim yesterday and I love some sun on my face, not too long, 30 minutes and this is always beneficial for me and I continue to stretch my neck muscles.

With the holidays here we are challenged, be cheerful, be happy, gifting is fun and soon we will be celebrating the birth of Jesus Christ, so never alone, he walks with me every day. Sharon

Have you tried lidocaine patches on your face parts with nerve pains? Topical Rx

kept me on lower dose of pills!

No, have not, but did use very large patches for butt pain and it did help some. I used those for awhile from '09 to '10 because I was taken off narcotics completely, just tramadol for pain. Then all this new neck and facial pain arrived about a year ago. I have been very careful with the percocet, 5 to 7.5 as needed. I used to be on mega doses of methadone and dilaudid when I was going through failed back surgery to correct spondylolithesis from '03 to '07, too many surgeries to count. So, thank you, I will ask my neuro about this. I tried that ointment with a type of pepper, caps-something and that did not work out!!! Darn stuff had to wear off, you can not wash it off. Sharon

Kc Dancer Kc said:

Have you tried lidocaine patches on your face parts with nerve pains? Topical Rx

kept me on lower dose of pills!