Has anyone got phantom toothache, chronic facial pain?

[donohue100]

Has anyone got phantom toothache, chronic facial pain?

I want to hear from people with diagnosed or undiagnosed facial pain at ***@**** for messenger or ***@**** email.

I suffered from chronic facial pain for three years and it destroyed my life. I was told I would have to just live with it. My symptoms matched an illness called neualgia inducing cavaitational osteosis but non of my dentists even believed this illness existed and laughed at me for trying a self diagnosis. Three years after this I found a dentist with a cavitat scanner who found I had NICO as i had told the dentist years ago. The dead bone was removed and all is well. Problem is this illness does not show on xray or cat scan.

I want to know how many people out there are needlessly suffering and how I can do more to convince people that NICO is reality not just a fictitious illness.

[ies130]

I Maureen, I did some searches on the internet and found a few places that treat this.  Where do you live- in the US or elsewhere?

[ies130]

I think I might have this too.  I have been to soo many doctors and no one can find anything wrong.  But I really do think I may have this.  I also don't know where to go to have this treated.   Any suggestions would be helpful.

[Maureengallant]

Where did you go for the NICO treatment? How much did it cost? I think I have this..but NO ONE believes me!!!!!! Help!!!!!

[goonos]

Yes i Do had an accident and now facial pain mine is a trapped nerve though, i'm trying to get root canal but not on xray and having an mri to see if picks up nerve dont think it will though..........my tooth is also sensitive to heat and the cold i get a toxins in my mouth also nobody can find a cause and it's agony and makes me cry.........

[shortcircuited]

Hi!  I'm so glad you brought this up.  Having some dental work done in July seemed to trigger horrible trigeminal pain, and I thought it might be TN.  Now that I am taking Tegretol, the pain is less, but I am also noticing pains in the bones of the other side of my face, which is not typical for TN.  When I read that epinephrine could play a part in this, that rang a bell.  More bells went off since I've been suffering from migraines and sinus infections over the last decade or so and was wondering if I might have a chronic infection that never really gets cured with antibiotics.  I will try to get in with an oral surgeon to ask about this.
Thank you for sharing this information.