I am completely confused. I was diagnosed with Atypical TN over 3 months ago by 3 GP's and a neurologist. At first it started as a toothache, then facial ache, then shocking, stabbing pains in lower and upper jaw and under the eye and then days later, the 24/7 burning pain in mid face/ear as well as the shocking/stabbing pains. I could not chew, eat hot or cold foods, talk, smile, go outside due to wind/coldness, or lay down from the pressure of the burning pain in my ear. Even opening the oven door triggered pain. I drank food at room temperature thru a straw on my opposite side. I initially had a full head x-ray at the dentist to rule out dental issues and they could not see anything. I ended up going to another dentist because I have a blocked submandibular gland and he took x-rays of my right side and found a cracked tooth. There is not an abcess but the x-rays were sent to a dental surgeon for review (black areas) and then now they have requested a copy of a CT scan that I had done in January. Tegritol started working after 10 days and has taken 95% of the pain away but I occasionally get mild breakthrough pain that is mostly triggered from wind, talking too much etc. Pain on the opposite side has also happened on the opposite side. I have not had the cracked tooth fixed yet as we are waiting for the oral surgeon's response. Is it possible that I don't have ATN or TN?
What do you think it is?
Your symptoms and triggers track pretty well to a combination of Typical and Atypical TN, and the positive response to Tegretal tends to confirm the diagnosis. A cracked tooth normally wouldn't settle down that way, and it certainly wouldn't present as pain on the opposite side of your mouth. I think you probably need to have a cracked tooth treated, but continue with your medication for TN pain. When your jaw has healed from the dental work, you can decide with your neurologist, whether to taper down on the Tegretal.
Regards, Red
That is what I thought, but I guess it was wishful thinking. I have been seeing so many specialists in the last 3 months because I became so ill that I feel like I am going crazy. Thanks for the advice.
Hi collette -
wow .
i have much to say. and try to keep it focused.
i've said here many times - i know PERSONALLY, at least 6-7-8 stories, here, in Israel, of people ALL the greates dental specialist assured them that they're problem ISNT dental. but in the end, after monthes/years of suffering they remoed the tooth (or done some dental procedure) and the same day - all their pain for month had GONE !
(of course of talked to many that removed teeth - and it didn't help) - but i'm just saying - even for the 5% there is a dental problem (even when 50 doctors say it isn't) it worth trying. i'm not saying "remove the tooth"- cause that terrifies me also . but i'm just saying - with all the respect for doctors - i'm heard many horror stories of people that had they accepted thier TN diagnosis - they would have till this day be in hell - instead of living like normal again.
that said... i toot sympathize with u . i also sometimes drink with a straw.
good think the Tegretol helped. 95% pain-less is great , no ?
what in the scan did they see by the way ? cause i know cracked tooth is rarely seen on XRAYs. i know stories of people removing tooth and then discovering it was cracked and all thier tooth problems, head ache etc - were gone (i also know many which that didn't solve and got worse).
i also had black areas in my CT - where my pain is. first they though of taking biopsy - then several doctors examined it and sayed - everything OK. i was disappointed cause i thought they'd figure it out.
the black areas - maybe indicate a bone problem.
by the way - i'm not a doctor - but learned a lot - when tooth in infected /untreated for a long time - it can change/damage the bone beneath it. so maybe that's the black areas. don't know.
please please update - it's very interesting.
Thanks Nir for all of your information and caring. I think the dentist noticed the crack tooth just by looking at it. I will let you know when I find out from the oral surgeon.
In my experience with this, it was important to get the tooth fixed, but unfortunately afterwards the pain problem remained. In fact, one of my more recent neurologists said that the work that was done probably created additional pain/inflammation of the nerve on top of what was probably an underlying TN. In my case, I had 4-5 "unrelated" things happen in quick succession, so her explanation is actually one of the more useful ones in terms of moving forward. Probably no one procedure or medication is going to resolve what I'm left with. Instead, different medications will work on different components of the pain and I also need to stay super-healthy and well-rested. Which you won't be able to do with a cracked/infected tooth. There are still days when I'm convinced that I need to get a bunch of teeth pulled, but I try to remember "that could very well make things worse." I do get those teeth evaluated by the endodontist every year, and he told me not to get any more work done. I am way more conservative than my doctors/dentists now that I realize that I am in this for the long haul, and they're just trying to patch me up so that they can move on to the next desperate patient (and because they do want to help, even when they're totally misguided).
My dentist called today to schedule a dental ct scan as my medical one did not show an image of my mouth/jaw. He said it is highly unlikely that whatever is going on with my crack tooth or possible cyst is causing the TN.
How long does it take to accept the TN diagnosis?
The TN diagnosis may not depend upon whether you have a cracked tooth or a cyst, Collette. Lots of cases of TN emerge spontaneously, and there's no medical principle that says you can only have one thing at a time going on. So it seems best that you be treated for both issues, without assuming that TN has been caused by a cracked tooth (or that it will go away when the tooth is extracted or repaired). What does have to be done carefully, however, is administration of dental anesthetic for a patient who may have TN. It would be smart to have your dentist and neurologist do a joint telephone consult to discuss your case before you have to have dental anesthesia.
Regards, Red
I will definitely have the cracked tooth repaired, but I am waiting to find out what the questionable black area is on the ct first.
I am waiting to see my second neurologist (end of May) as the first one I saw was not helpful by saying that drugs were my only option and she would not order an MRI. What information about dental anesthesia would be discussed?
Richard A. "Red" Lawhern said:
The TN diagnosis may not depend upon whether you have a cracked tooth or a cyst, Collette. Lots of cases of TN emerge spontaneously, and there's no medical principle that says you can only have one thing at a time going on. So it seems best that you be treated for both issues, without assuming that TN has been caused by a cracked tooth (or that it will go away when the tooth is extracted or repaired). What does have to be done carefully, however, is administration of dental anesthetic for a patient who may have TN. It would be smart to have your dentist and neurologist do a joint telephone consult to discuss your case before you have to have dental anesthesia.
Regards, Red
Some TN patients react to dental anesthesia shots, with protracted break through pain. Many neurologists advocate "loading up" on anti-seizure meds before dental procedures and then tapering back after procedure is complete. Likewise important is avoidance of over-filling root canals (when needed, which in your case, they might not be), and /or deep needle probes that might directly damage the nerve endings in your jaw.
Regards, Red
Thanks, maybe I will wait until I meet with the new neurologist then before repair.
Richard A. "Red" Lawhern said:
Some TN patients react to dental anesthesia shots, with protracted break through pain. Many neurologists advocate "loading up" on anti-seizure meds before dental procedures and then tapering back after procedure is complete. Likewise important is avoidance of over-filling root canals (when needed, which in your case, they might not be), and /or deep needle probes that might directly damage the nerve endings in your jaw.
Regards, Red
Wind blowing on your cheek is not a symptom of cracked tooth unfortunately -- in your heart you probably know that TN is yours forever (whether active or not like a volcano)
You have to go thru steps of grief - like the steps of dealing with a death--- posting them seperately on the boards : )