Hi I am new to this support group, and am still unsure whether I do have TN or atypical facial pain, or just lots of dental problems!! I would appreciate any advice or experiences which might help me as I'm experiencing quite a lot of pain at the moment. My dental problems started in 1997 and since then I have had 8 root canals, and subsequent extractions of the teeth a few months later due to excrutiating pain which only stopped when the tooth was taken out. The latest pain started last year, and went on for 9 months. I was finally referred to a neurologist, and put on gabapentin which has definitely reduced the pain. I had 9 months pain free, and the pain started again a month ago. So far it is fairly constant even with 1600mg of gabapentin daily. It hurst to chew on the tooth, and afterwards it aches for a long time. I wonder if there is a tiny fracture which doesn't show up on the xrays, which are all normal. I also get shooting pains on the other side of my face occasionally.
My difficulty is in trusting that this is another flare up of neuralgia, and not a fracture in the tooth (which it feels like). I used to grind my teeth (before getting a bite plate) and because I have lost so many teeth there is a lot more pressure placed on the ones left! I dread losing another tooth, but it is also hard to take in that this pain is not dental. I wonder if anyone has been through anything similar, or who could offer any suggestions in finding out what is causing the pain. My dentist is at a loss, but can't see anything wrong. As the pain goes on I feel more and more like having the tooth extracted!
I do not think my answer will help too much, but I went to dentist numerous times over the years. Before the Novocain would wear off I would be in excruciating pain. During the process of not having a true diagnosis I have had numerous extractions, root canals, bridge work, etc. I would really recommend writing down your day to day symptoms and seeing a neurologist. Keep in mind that if you do have TN statistics show in majority of the cases it takes years before one is diagnosed. In my case it took over 20 years - because it is rare for young individuals to have this.
You may have a combination of dental problems and neuralgia. However, I just wanted to address your reference to "Atypical Facial Pain".
From all I have gathered, the term "Atypical Facial Pain" is a wastebasket sort of term that Neurologists use whenever a physician is either skeptical or, is unfamiliar with "Atypical Trigeminal Neuralgia", or "Type II Facial Pain". As a "Head and Face Pain Specialty Neurologist" once told me, "we just don't know what causes it", when referring to ATN.
However, you will find the phrase "Atypical Facial Pain" scattered around in medical literature when addressing facial pain. Some are lobbying to have that changed, as many physicians believe the "Atypical Facial Pain" can be of a psychogenic origin.
If the pain follows the path of the Trigeminal Nerve, it does sound as if it could be Type II, or "Atypical Trigeminal Neuralgia". This is my formal diagnosis. Gabapentin is also part of my regimen of medications. It seems to help some with the burning sensations that I experience. But, it does not maintain me on it's own.
If you have a positive response to Gabapentin, then most neurologists would regard that as a strong confirmation that you are dealing with some form of facial neuralgia. The disorder called "atypical odontalgia", in which pain response is centered primarily in the teeth, appears to be just another form of facial neuropathy pain. As Stef ably relates, "atypical facial pain" is just a fancy name for "damned if I know" on the part of a doctor. In my hopefully informed opinion, whatever you do, do NOT NOT NOT have additional extractions without confirmed evidence of abscess or infection in high-quality X-ray imaging.
Stef, Gloria E and I have just completed publishing a wide-ranging review of information pertaining to diagnosis, treatment, and family issues surrounding chronic face pain. Please see the "Face Pain Info" tab on the site menu above, and spend some time reading. Feel free to come back with additional detailed questions. There is a tremendous body of knowledge among the 1300+ people who are members here.
Thank you for your replies! I’ve been on gabapentin since the pain recurred, and it seemed to reduce the pain at first but not recently. Red I appreciate your guidance as I feel very much on my own with this, dentist at a loss, and referral to the neurologist is taking weeks already (NHS). I will do some more reading as you suggested and wait until something shows up on an xray. My fear was that small fractures in the tooth might never show up! Thanks again! Maggie
Thank you Jackie, much appreciated and good advice about the medication. I called the outpatient dept today and they said earliest appointment would be September!!! So I need to get some help before then, maybe from the GP.
I went back to my dentist today and she ground down the biting surface of the affected tooth and now wow the pain!! hurts in the gum underneath the tooth where there is a constant deep ache… with very occasional shooting pains on the other side of my face… going to try to get an xray tomorrow as feel sure there must be something obvious happening in the roots of the tooth… does anyone think this sounds like neuralgia? the tooth still hurts to chew on!
I'm with Jackie on this one. There is a condition called "atypical odontalgia" which almost precisely mimics the symptoms you report, Maggie. It's a variation on facial neuralgia where the pain response is concentrated in individual teeth or jaw immediately adjacent. I've talked with patients who have had as many as 12 teeth extracted in a vain effort to "chase down" the pain as it migrated from tooth to tooth following each extraction or root canal.
Get a high-resolution X-ray done of your teeth, immediately. Unless an abscess is highly evident, don't let a dentist (or your own discomfort) prod you into having teeth removed. See a board certified neurologist for evaluation of facial neuralgia and atypical odontalgia instead.
Thank you, that's so helpful. I have booked in for an OPG x ray tomorrow. The symptoms of this tooth are exactly the same as all the other root canal treated teeth that I have had extracted, the dentist could not find anything wrong with them on x ray either. Part of the problem is my own attitude, I feel convinced that something is happening to the tooth as that is how it feels!! So your replies are so helpful in prompting me to see this differently. I will try NHS direct, thanks for the idea Jackie!
An OS is an oral surgeon and a OMFS is an oral maxillofacial jaw surgeon here in the USA. also here an endodontist normally does rootcanals not a dentist… an omfs is one that did nerve repair on me because of dental nerve damage in 2001. all because i let a lame dentist extract my wisdom tooth … you do mention that after extractions your pain went away. most TN symptoms would include burning, electrical shock sensations, crushing feeling or numbness. sometimes constant or not. so which part did neurontin help you with? filing the tooth down also causes lose of enamel which is not good! do not let anyone do that again! what i have found along my journey with this is that the neurologist did not go to school for study of the jaw/facial nerves like the omfs did… I know nothing about NHS except that its way different than what we have here in the USA…
Thank you. I have had all those pain symptoms you mention, and the neurontin definitely helped to reduce these. Recently the pain has changed though, and appears focused on one tooth with symptoms I have mentioned - pain on chewing and afterward which is located deep in the jaw beneath the tooth. The tooth also feels 'electric' to touch. Am very appreciative to be able to tell my story here, and get feedback! This is the first opportunity I have had to do this! I saw the neurologist for the first time last year, but by the time I got an appointment my symptoms had almost gone so he couldn't really help me. I did have an MRI scan, which appeared normal. Thank you for your reply, I hope you are feeling better since the nerve repair.
I had an OPG x ray today (whole mouth digital) at a walk in clinic where I had the same type of x ray a year ago. The dentist compared the x rays from today with a year ago and showed me a dark area next to the root of the affected tooth which was not there last year. She said this was an area of infection probably due to a fracture in the tooth. I asked them to email the x rays to my dentist and managed to get an emergency appointment to see her. The x rays hadn't arrived so she took a small digital x ray which did not show this dark area. She said that this x ray was much more reliable and the dark area on the OPG could just be some sort of shadowing from how the OPG worked.
I had been so relieved to see something physically wrong finally! but now it seems this is not accurate. My dentist does think it is likely to be dental however and recommended doing the first part of a root canal next week. She said that being a pre molar it is much easier to do than molars, and if there is a fracture she might be able to see it. I'm just not sure as I think it is either a fracture or neuralgia, neither of which would be helped by a root canal. At first I told her I had promised myself no more root canals, after having 8 which failed. However she kind of talked me round by saying that having the first part would give a clear indication whether or not it would work, and I could stop then and have it extracted if it was still painful. Feel so confused, and I was a bit tearful, but scared to show much emotion in case she considers me to be emotionally unstable, and making it all up!!!
Any thoughts anyone? thank youi for the opportunity to share.
Eight root canals?????? You need the advice of an oro-facial pain specialist or maxilliary surgeon who has better training, I think. The pattern of pain, root canals, and dental work that you report is very common among facial neuralgia patients who have been mis-diagnosed as having dental problems -- when the problem isn't dental in origin, at all. If you have some form of trigeminal neuralgia or other facial neuropathy, then extraction of the tooth won't help.
Get another and better qualified opinion before you take a step that creates permanent damage.
Thank you Red and Jackie, I have decided to postpone any treatment until Sept when I will get the appt with the consultant neurologist hopefully. This had been my decision before seeing the dark area on the x rays, which has now been discounted! I find it easy to panic when I'm in pain and trying to find a resolution!
Hi Maggie, I am so sorry to hear that you are going through this. I can relate, because I also have overlapping dental and facial pain issues. In my case, I have a number of fractured teeth, likely the result of landing on my head after being hit by a car years ago. I also have facial neuralgia which none of my doctors have ever been able to find a cause for. I know all too well how challenging, worrisome and frustrating it can be to determine the best course of action when faced with tooth-specific pain. It is especially so when the neuralgia mimics the type of pain that a fractured tooth produces. My doctors have followed the process that Red advocates: Unless there is radiographic evidence of abscess, no dental work is done regardless of the pain level. (That said, one exception was made for a tooth that was, indeed, found to be infected -it's a long story - but I have since learned that the x-ray technology used was likely not sophisticated enough to have detected the existing abscess.) My approach has been that if my dentist, endodontist and orofacial pain specialist all agree that work is needed, then I know I am making a well-informed, sound decision, as they are all a hard sell on dental work and will only do it if it is absolutely necessary. So far, we have always been right: The root canals have been successful and stopped the pain from the decayed/dying nerves. The underlying facial neuralgia remains, of course, as in my case it seems to be a separate issue. It is worth noting that I have had instances where one tooth hurt so relentlessly that I started to wonder if something needed to be done only to have the pain move to another tooth after a while. That's a sign that it's "just" the neuralgia and not the tooth itself.
In terms of your pain reaction to having the tooth ground down, that has happened to me too. Any type of poking and prodding tends to really aggravate my neuralgia and make it even worse, which is pretty great motivation for avoiding unnecessary dental work!
For a long time, I dismissed the neuralgia theory because my pain always went away, eventually. It was only when I had more evidence in the form of additional episodes, that I realized that it always comes back as well and I started to take the idea that there is a neurological element to this seriously. Now that I have done more research, I understand that TN sometimes comes and goes and so my pattern is somewhat common. No one wants to have a neurological disorder and especially not one that is as unpleasant as TN.
I am not a medical professional and am only sharing the opinions I have based from my own experiences, but for what it's worth, I think your idea to wait to have the tooth worked on until you have a second opinion is a good one. Given your special circumstances, seeing an orofacial pain specialist might be helpful as well. I don't think your attitude towards this is part of the problem, myself. You are just thinking in logical terms about a condition that knocks logic on it's head. It's maddening.
I hope this is helpful in some way. Please let me know if you have any follow-up questions.
thank you so much for your reply. You make me feel sane, rather than a bit crazy which I really appreciate!
I'm going to wait until I see the consultant, as I don't want another extraction without a good reason. I hope you have recovered well. It's so difficult when there is a combination of dental and neuralgic symptoms.
Thanks for the reference. I have incorporated it into the Face Pain Info tab in our site menu, in the section pertaining to nerve damage from dental work.
Thank you. I had an implant placed next to the tooth that is now painful, however this was a year before the first of the 2 x rays which were taken a year apart. The dark area near the root of the painful tooth has appeared since last years x ray, and the dentist taking the xray thought this looked like infection. My dentist took another x ray which didn't show anything, so it's very confusing. I'm still in pain and am waiting to see the consultant, can't get anything before September, so might have to re think what to do. Thanks again for your interest and help!
Experience varies between patients. I've talked with a good many people over the past 16 years, who have gotten significant pain relief or reduction from both Typical and Atypical TN, using Neurontin. And since it is not metabolized in the liver, this medication has a lower incidence of toxic side effects. My wife has been on 2700 mg per day for the past 10 years, and has very few side effects from it. Her pain is "managed" at low level, though she feels achiness and sometimes twinges in a lot of days.