Question fot Atypical Facial Pain Sufferers

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superjen

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After 2 years of pain in one tooth, my dentist numbed the area to see if it was the root causing my pain after previously being ruled out. I still felt pain while numb. He decided to refer me to a neurologist. His office contacted all of the neurologists in my town (including one he's referred to before) and they all declined to see me because it's just a tooth.

So I am curious to know what the pain that you've had diagnosed as atypical pain feels like. I am hoping to find some comfort if my pain is similar.

Thank you!
 
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MountainMama

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I was diagnosed last year after having multiple molars extracted, after failed root canals. The pain was still there with the implants. My oral surgeon referred me to my primary doctor, who the referred me for an MRI and a visit to a neurologist. The MRI was to rule out MS, and the neurologist used it as well to look at nerves.
The pain can change for me.
Many times the pain is between my teeth, in the gums, so that I can’t distinguish exactly which tooth hurts. Sometimes, it will burn around a tooth or implant. Other times it is a sharp, zinging pain that comes and goes. Other times it is a dull or sharp ache. It is mostly on the right side of my mouth. When I get a flare up, my teeth can be very sensitive. It also comes and goes.
 
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LauraQ68

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I think I’m dealing with something similar on my left lower jaw. Dentist and endodontist don’t see any problems, but I’m having jaw pain/ache along the jawline, or sometimes sharp in one spot on the jaw, sometimes far back near the jaw joint…sometimes near a tooth. it’s crazy! I have had full mouth x-rays, panoramic x-rays, and bitewings, so if there was something there they would have seen it. At this point I’m thinking atypical facial pain, but no one has said those words.
 
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MountainMama

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It is incredibly hard to diagnose. It is basically just ruling everything else out. After I had two molars extracted and the pain was still there, there was nothing else it could be. I had two teeth removed that were probably fine. I had a front tooth that had abscessed from a childhood injury and it had a root canal and then still hurt. I ended up having it out and an implant put in and still have pain around the implant, and in the tooth next to it, that has had zero work done on it and is very healthy. It is a crazy, horrible pain that comes and goes.
 
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LauraQ68

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Ugh, yes, I guess there are no easy answers. I’m so sorry for what you’re going through (and the OP, too). it’s bad enough on it’s own, but add dental anxiety in and it becomes quite debilitating.
 
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MountainMama

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I will add that the neurologist really wasn’t much help. They were able to tell me that the trigeminal nerve looked fine but couldn’t offer any help. He said that there were medications but that the side effects were pretty severe and he would not recommend them unless the pain was making it impossible to cope. Mine is awful at times but I can live with it as long as I know my teeth actually are fine. I do have the panic of “is it my teeth or the AFP?” every time but if the pain moves or fades after a week or so, I know it is the AFP.
 
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superjen

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Many times the pain is between my teeth, in the gums, so that I can’t distinguish exactly which tooth hurts. Sometimes, it will burn around a tooth or implant. Other times it is a sharp, zinging pain that comes and goes. Other times it is a dull or sharp ache.
Thank you MountainMama. I have followed your story on here for awhile and it is part of the reason I asked my dentist for a second opinion instead of 'trying' a root canal. I could have written the part quoted here. The burning pain around the base of the tooth is maddening. Sometimes my gums around that tooth hurt so bad that I'm sure they'll be red and inflamed, but they always look pink and healthy. It often feels like someone is pushing the tooth upward. And on occassion my front teeth hurt too much to eat, or my back teeth on that same side have nerve pings that make me sure they need to be pulled.

It looks like I am not the only one who can't get an answer until everything else it's ruled out. I find it interesting that the neurologist didn't help much. I had all my hopes pinned on the endodontist, but once he said it wasn't the nerve he didn't offer any other insight. My dentist is going to send me to an oral surgeon to check it out. I'm not eager for help from someone who pulls teeth for a living, but I'll try it. We don't have any maxofacial pain specialists in my town either. I will consider driving 3 hours to another town to get help if it comes to that.

I am seeing a new doctor later this month and I hope she will try to help with ruling things out. It's frustrating, but helpful to know I'm not alone.
 
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MountainMama

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Thank you MountainMama. I have followed your story on here for awhile and it is part of the reason I asked my dentist for a second opinion instead of 'trying' a root canal. I could have written the part quoted here. The burning pain around the base of the tooth is maddening. Sometimes my gums around that tooth hurt so bad that I'm sure they'll be red and inflamed, but they always look pink and healthy. It often feels like someone is pushing the tooth upward. And on occassion my front teeth hurt too much to eat, or my back teeth on that same side have nerve pings that make me sure they need to be pulled.

It looks like I am not the only one who can't get an answer until everything else it's ruled out. I find it interesting that the neurologist didn't help much. I had all my hopes pinned on the endodontist, but once he said it wasn't the nerve he didn't offer any other insight. My dentist is going to send me to an oral surgeon to check it out. I'm not eager for help from someone who pulls teeth for a living, but I'll try it. We don't have any maxofacial pain specialists in my town either. I will consider driving 3 hours to another town to get help if it comes to that.

I am seeing a new doctor later this month and I hope she will try to help with ruling things out. It's frustrating, but helpful to know I'm not alone.
My oral surgeon was actually the one who first diagnosed me. He had done the implant on my front tooth and had done a great job! He was an amazing oral surgeon and was meticulous and thorough. When I kept coming back for pain, and everything looked great, he suspected AFP but we had to rule out anything else, which is why he referred me to my primary doctor. I know exactly what you mean with the gums. The gums around my front tooth implant crown feel so raw and swollen right now but look pink and healthy.
 
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Cici1986

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Hi super Jen, I was wondering if you had any update on your condition? I have exactly the same issues almost. One tooth horrible pain. Redid a filing, then a root canal. Pain just got worst in this tooth continually aching and throbbing with each new treatment (I will say I get small pains in other teeth only on the right side and shooting pains in my head too) Then after a year, Endodontics spotted a root crack. I thought thank goodness. I removed this tooth, developed an infection and dry socket. However, the pain went in to the tooth next to the extraction site the same. Very depressing. I’ve also been told if the pain is mainly in one tooth it’s not atypical pain. The dentist can’t see anything wrong my tooth just throbs and feels like it’s not in the socket right almost like it’s being pushed up. If you have any news I would love to know.
 
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MountainMama

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I just wanted to comment on the pain in one tooth. I have AFP, and for a long time, I had pain in one particular tooth at a time. It was why I ended up losing two teeth that probably didn’t need to come out. After they were removed, the pain just transferred to another tooth. I figured that those teeth were more sensitive and I was feeling the pain more in that tooth. Now that I know what it is, I have been able to differentiate the pain better. I have noticed that it is often between teeth but if I don’t really pinpoint it, it feels like one particular tooth.
 
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superjen

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Oh I can't believe that happened to you. Many people on here have had pain move to a new tooth, and that scares me. The pushed up feeling was the initial problem with my tooth. 2 years and probably 15 visits to 4 different dentists and they found nothing. Do you think you may just heal very slowly? I'm thinking with dry socket the healing would be painful and continued pain as the healing is completed may expand to neighboring teeth. You should ask a dentist on here.

As for an update- I actually went to my 5th new dentist in mid-October. I asked him to look at the filling in the tooth that is bothering me. He said the filling looked fine, but he did find a crack using illumination, which is a test the endo didn't do. So I had a crown put on that day. 2 weeks later my gums still looked very raw so I was prescribed 2 different rinses, chlorhexidine and rincinol. Some of the pain from the root being exposed by irritated gums went away, but my gums still burn around the tooth.

I went back in today and he agreed that it shouldn't still be irritated. He checked for plaque or cement and didn't find any. He wants me to use inter dental brushes covered in chlorhexidine daily and come back in 2 weeks.

As for the atypical pain, my front tooth on that side and my lower back tooth have hurt through all this, but he found nothing wrong with those. It could still be that the crack is putting bacteria into my gums and I'll still lose the tooth even after the crown. I'm praying I don't because I think that will be the end of smiling for me.

I really hope your pain goes away. I'm heading to the store later for some benzocaine gel and I may even try teething tablets. I'm willing to do anything to not be in pain 24/7.
 
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superjen

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I think many people on here have said that it has helped to get their teeth checked to confirm that is just the atypical pain and not the actual tooth. Cici1986 I hope you can find some relief.
 
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