I have been struggling with what I thought was an ear infection for quite awhile. I was on three different antibiotics with no relief. I finally went to my ENT and he told me that my ear was fine. He then ordered a CT scan of my parotid. This came back negative for parotid or salivary gland problems. The pain continued without relent. I subsequently had 2 MRI's of my neck & brain. The diagnosis is TN. I am currently seeing a neurologist who has me on a low dose of trileptal and large dose of percocet. I also suffer from CVID and receive monthly infusions of IGG. I was wondering if anyone knows if there is any correlation between the two since they are both not very common afflictions. I have a little relief from the trileptal but hope to acheive a better pain response as he increases the medication. I thought I was losing my mind. Never in my life did I have so much pain.

Welcome! Okay, I know I'm not with it, but what is CVID? I am having "atypical facial pain" and have been put on trileptal. We do have a group for people with TN. I am now up to three trileptal pills a day. I am feeling drowsy, so I hope that will get better soon.

I'm another newbie as well. I was diagnosed with "atypical facial pain" on Aug. 25th. My neurologist prescribed amitriptyline. I have some percocet too, but it doesn't seem to do much to alleviate the pain. My neurologist insists that I do not have a neurological disorder. I'm getting another opinion and have scheduled with another neurologist (not in the same office) for October.

My pain started Aug 7th after a tooth extraction. The tooth had had a root canal 3 1/2 years ago. My dentist never even discussed a redo of the root canal. He suggested that the root might be cracked and said that would not show up on an xray. Only way to tell was to pull the tooth. I had pain in that tooth for 3 1/2 years, but I'd gladly take that pain back over the 100 fold pain I am experiencing now. Five trips to the ER in 2 weeks! No help by going there. None of the ER docs thought it was TN because the pain is constant.

I too have had earache pain on the effected side for many years. Every time I went to the doctor and mentioned earache, he said the ear looks good. No infection. I went to an ENT several years ago and was told that I most likely had Meniere's Syndrome and to limit my salt intake. I've had TMJ in the jaw on the effected side as well. And once in a great while I would get a stabbing pain in the temple on that side. Sure wish I'd done some research on those pains combined with the toothache. If I could go back to Aug 6th and redo that day, I'd NEVER have had the extraction. I could deal with what I had been experiencing, but now I have CONSTANT pain in my upper teeth, nose and cheekbone. It never goes away.

CVID is common variable immunodeficiency. It is characterized by always getting sick with constant respiratory infections, sinus, ear & throat. I was diagnosed quite by accident this year also. I am just wondering if there is a link. My TN presented as an ear infection that was not remedied by three courses of antibiotics.

Off hand, the two don't sound related to me. The facial pain is supposedly coming from some sort of irritation to the trigiminal (sp?) nerve to the face. However, since I had never heard of your first diagnosis, I wouldn't bet all of my money on this thought. My goodness, people have such tough medical problems. Sorry you're having to deal with all that!

hello to all,

I have TN and was diagnosed over a year ago. I had 4 root canals in 3 teeth before being diagnosed. For several years prior, I used to always think I was getting an ear infection, especially with a cold. dr would always tell me ear looked fine.
I now realize I was probably feeling the first of Tn.

I also have sero negative rheumatoid arthritis which is an autoimmune disease. It sometimes messes with my IGG level.I take one of the new biologic drugs for my RA. my rheumatologist is not convinced I have RA, but I do respond well to RA drugs and have enough symptoms to fit in this category. she says she sometimes believes I have so ethnic rare and one day someone will figure it out. as of now, nothing shows on tests.
She also believes there is some sort of connection between my Tn and autoimmune disease. I have had other strange issues such as my small blood vessels in the retina of my left eye necrotized and burst and caused my eyesight to go blurry. everything is always on left side of head.
all the near Dr say that the only autoimmune disease that has any connection with TN is MS. they tell me I just had bad luck getting more than one thing.
I have had 2 MVD to fix Tn and it seems to maybe be okay for now. I was left with damage to my occipital nerve from one of the surgeries and am now dealing with that.
hope this info helps.
Easygoing

I know of people have gotten .T.N. from sinus infections and tooth decay
as the infection can spread and damage the t.n. nerve . the sinus and also teeth are all close to the t.n. nerve. so infection can travel and one can get T.N.
also I know there is a connection for M.S. folks many have t.n. but it dose not go the other way around.
people with t.n. dont get MS from having T.N. .