I was in remission for 18 months from October 2010 until August 2012 and now it has come back twice as bad as it was before. I got a bad cold in September and found that blowing my nose constantly brought upon the worst stabbing pain I could imagine. It nearly brought me to my knees. The pain is like a hot knife plunging into the left cheek and leaves me with hot pain all down the left side of my face from my eyebrow to my jaw with all my teeth on the left side aching. It is sometimes like this for hours. I am going insane with it. Of course the pain come when I talk and eat but that is a given but nothing like when I blow my nose. Eeek who would have thought!
Hello, do you still have some Tegretol that you can take. The same thing just happened to me over the weekend. I know how you feel. I hope your okay. xox
Hi Sally, yes I have Tegretol and am taking 400mg morning and night, is is just taking the edge off the pain but hardly at all. I hate this TN, grrrrrrr.
Sally said:
Hello, do you still have some Tegretol that you can take. The same thing just happened to me over the weekend. I know how you feel. I hope your okay. xox
Hi Loretta, I also have had this pain - it is awful... I discovered an old 1960's remedy B12 - so I started taking 1000mg B12 a day and after 3 months one side of my face was pain free, it took 6 months and the other side was free of pain. I had a blood test for B12 at my doctors - levels can be 50 to 811 and mine was at 612 so okay - its water soluble like most B vitamins.
I went into remission for 9 months with no pain, it was amazing. Then 6 weeks ago it came back, but I had been slack and backed off the B12 not taking it every day.... so not back on B12 again and hope it soon sorts it out....
The difference this time is that the pain is not as bad, plus I can eat and talk, which I couldn't in the past, plus I can manage it better with lower doses of medication (Tegretol).
B12 builds up nerve sheaths... and I believe that is what it has been doing, maybe I need to continue daily like Glucosamine for arthritis, repairs on a daily basis....
Hope this information might help you.... Gail
Hi gail i just want to check that dose of B12 do you mean 1000mg or1000mcg i am currently taking 500mcg and whpould like to up the dose but i am thinking ypu mean mcg please let me know
I am going to try this remedy. So how much Vit B12 can we take?
Chris
1000mcg per day... I found if I dissolved it under the tongue it actually gave some relief...
My TN came back recently... but I had been slack and stopped taking B12 daily so now back on a daily dose with Tegretol to help.... strange it was different this time it did not stop me eating .... maybe the B12 is the reason...
I need to see my local GP soon and get a blood test to see the level of B12 - if it has dropped then maybe that will explain why it came back... but not as bad as previously...
Also still trying to find a good neurologist... last one did not want to know....
May get a referral to see Dr Sarah Olson in Brisbane... do not know who recommended her but she is on the list on this website and her website looks good.
Hugs gail patricia
evie said:
Hi gail i just want to check that dose of B12 do you mean 1000mg or1000mcg i am currently taking 500mcg and whpould like to up the dose but i am thinking ypu mean mcg please let me know1000mcg sorry....