TN pain since 2008

[yardlover]

I have had TN this horrible disease since 2008. I was able to go for at least 2 years with only taking 200 mg a day of carbamenzapene and now I am up to 900mg and sometimes that does not help. I am also finding out that if I get the least bit upset or nervous it makes the strikes worse, ( has I am a little nervous writing this). Has anyone else had this same problem and what did you do, increase the medication how much? I would also like to have the new gamma knife surgery for this, has anyone had this procedure done and how did it work?

[yardlover]

Thank you all for your help. I am now trying to take Vitamin B-12 shots and tablets. I did read the book striking back and it was very interesting. I decided to try the Vitamin B-12 approach and it already seems to be helping. Seems like my TN just feels different . I was having to take my carbamapenzapene every 6 hrs and now I have cut it back to 8 and 10 and have actually been able to touch my face in that area. I have decided to skip by B-12 tablets  two days just to see if there is any difference ( very scary though), in the way my face feels.  When I was taking the B-12 I did not have any of the tingling in my face, I describe some times as (ants on my face feeling). But today I am beginning to notice some, no stress , so it is making me wonder.
          Since B-12 injections were able to bring back my Father's eye sight years ago, I thought I had to try this approach. He was told he would probably never be able to see again by eye specialist but a local Dr. tried this approach and his eye sight slowly came back. He lost his sight while poisoning his crops the dust blowing around and him breathing it.
          Hopefully this will help. I will keep posting.

[painterchic]

For sure stress and anxiety make it worse. The mere act of tensing up and clenching teeth can aggrevate it in addition to all the other things stress can do. You should probably discuss gamma knife surgery with your doctor and see if it is the right choice for you.
Take care,
J

[nancy99n]

I got TN in December 2008.  Once I found a good Facial Pain Specialist in February 2009, he helped me get my pain under control using Trileptal at 1800 mg per day.  Since I have MS (so I'm different than a "regular" TN patient) and no blood vessel compression showed on my MRI, he and the neurosurgeon suggested a Gamma Knife.

All procedures other than an MVD - Microvascular Decompression - are destructive procedures.  Lots of "experts" suggest that if your MRI shows a blood vessel compression and you are a candidate for it, you should have an MVD as the first procedure since it is the only non-destructive surgery.  Desctructive procedures can cause scar tissue and may adversely affect any future MVD's results.

I had my Gamma Knife in April 2009.  It takes 4-6 months before you know if it worked.  Mine appeared to work -- I was pain-free and drug-free for about a month and then half my pain came back (I had pain in the upper and lower jaw areas -- the GK seemed to control the upper jaw pain for about 11 months).   Again, I am not your "regular" TN patient -- so my results may be different because of that.  I know of other patients who've gotten great relief from each type of surgery.

I then had a Balloon Rhizotomy in January 2010.  Results were immediate -- no TN pain upon awakening from surgery.  I was pain-free for about a month and drug-free for about 2 weeks.  Then the pain returned in both the upper and lower jaw.

I then had a second Balloon Rhizotomy in April 2010.  Again -- results were immediate - no TN pain.  I have been pain-free and drug-free for about 2 months now and am hoping that the Third Time is the Charm.  

The left side of my face is numb, including half my teeth and half my tongue -- it makes eating an adventure!  My doctors were very straightforward and honest about what the side effects would be.  I'll take numbness rather than pain any day!

Best of luck finding your pain solution!