Friday, March 4, 2011

Nice to see so many new people adding to the blog - your posts are all so welcome and appreciated. Be sure to add yourself as a follower if you want to be notified of updates as others comment.

Responding to some of your comments:

  • Yes, I've heard magnesium is good for nerves as well as constipation, a common side effect from the painkillers. I bought some and take it from time to time.
  • Re: medical marijuana, it's not offered in my state, but yes, I've heard great things about its effect on neuropathy, and with fewer side effects; it doesn't have to be smoked, you can get special food, drinks, etc. for medicinal purposes.
  • Re: neuromas, not one Dr. yet has suggested that could be an issue, but from what I've read online, it just seems it might explain why the pain has continued for such a great length of time while most people heal within a few weeks.
  • I , too, have had numerous medical "experts" try and tell me my pain is not from the novocaine injection that fateful day 15 months ago, and it is beyond infuriating, because I was perfectly fine before it, and permanently in pain afterwards!

The last few weeks have included medical opinions #11-#14, all of which led to no conclusion whatsoever. I saw an OS (said the teeth should come out), a dentist (said should go in and take a look to see if there are any cracks not visible in the 10 xrays and CT scan I've already had) then if not put crowns on the teeth but if so, pull 'em out and get implants; then another endo who said it's probably nerve damage and will still hurt even if the teeth are removed; then yet another endo who numbed each of the teeth individually on upper left side to try and identify where the problem is coming from, then announced she could not figure it out and referred me to an orofacial pain specialist - who doesn't accept insurance, naturally. But I'm going anyway - that's on March 16th.

Meanwhile, pain seems to have worsened and expanded to the entire left hemisphere of my head. My ear, throat, skull are all affect in addition to the trigger point where the aching 2 teeth are, plus of course the constant burning tongue on one side. But, through positive thinking and percocet, I muddle my way through a demanding job, caring for children, and taking care of the house. Can't say I do all of it entirely without complaint, but I try.

It is very easy to get depressed, as one my recent posters mentioned he was completely healthy and fine til this happened. It sometimes feels like a death sentence- not really, but certainly like life in prison... A prison of pain and Hell until you can get that pain under control. Pain does strange things to us. The fight or flight impulse kicks in and causes great anxiety, which only worsens things. So I try my best to remain calm and keep things in perspective; this isn't life threatening, things could always be worse, and I need to be strong and get through it.

If I'm helping others in the process, that means there's a reason for all this. I find something about that comforting.


  1. Hello This is Stan in Boston.I have had lingual nerve pain for 4 years. I had diagnosed myself with BMS But the real diag turned out to be Unowhat.I had tried many drugs.Right now I take Neurontin 3000mg. Amytripteline 25mg 4x da
    Tramadol 300mg da.and salagen7.5 4xda.This combination brings me some relief.I had to leave my work as a self employed cleaner and got on SSDI.I nap during the day.This combination plus remeron and cloazapam is a tall order even a trip to the store is a major production.Enuff about me U

  2. Hi, this is Marta from Germany, who after 5 years found a way to treat her damaged nerve. My lingual nerve was damaged five years ago. After two years of feeling nothing in the right side of my tongue, I wasn't hoping anymore that it would get better. Then, the pain occured and with every month, it was becoming unbereable. My story is quite long but the bottom line is that I finally found something that helps. I found out about a Professor from Stettin, Prof. Opalka, who developed a new method of curing the damaged nerves (jaw, tongue, etc.). They use a device called VIOFOR JPS. It produces a certain kind of magnetic field. I started this therapy two weeks ago (I'm having it two times a day) and can already feel changes. I didn't read the whole blog so I don't know if you already discussed Viofor. But if not, let me know if you're interested in finding out more about this therapy. I'll be glad to share and maybe help to find help some of you out there, who also suffer from this condition.

  3. Marta - Thank you, this is exciting news....I've not heard of Viofor in the States; I quickly Googled it and seems it's not made it beyond Europe and the UK, but I'll have to explore further. Please feel free to share the rest of your story here, it may really help someone, and definitely keep us posted on your progress!

    Stan in Boston - ugh - I am sorry for what you are going through. I too have trouble working and fighting that need to nap every day, and am on much less medication than you. Doc needs to work with you to narrow down which is helping you more and eliminate the others.

    My update this week - new orofacial doc has theory that the chronic pain in both my tongue and everywhere else is a complication of severe temporal tendonitis, likely caused originally by dental work but exacerbated by stress/clenching/bite issues; can't say for sure. He's unsure whether it's nerve or muscle related. The temporal muscle goes from cheek to temple, completely around ear to the jaw. I am trying some new therapies and will report back soon.
    Take care, all.