After 8 months of burning pain in my tooth and numerous dental visits I was told there was no dental problem and I didn't need a root canal. Went to a nuerologist (who was terrible) and had an MRI and MRA of the brain which was normal. Was recommended to go to an orofacial pain clinic at the local dental school where I had a thermography done and an extensive exam. I was told I do not have TN but nueopathic pain in my right inferior alveolar nerve, local allodynia, relative hyperesthesia on neurometry. They also said it comes from the Trigeminal nerve. I am now on 300mg of gabapentin 3 times a day. I have had an improvement when I was on 300mg once a day since after only 3 days on it I had a day without pain. The results are not consistent as I have been increasing the dose and have some pain free days and sometimes no pain until late in the evening, but once the pain starts(it can happen any time during the day) it get worse and worse and doesn't go away until I fall asleep. The gabapentin does not relieve the pain once it starts. I don't have any pain when I wake up but then I never know what time it will start. I had no pain for 1 1/2 days and then I felt something stuck in my tooth and tried to floss it out. It immediatey started to hurt a llittle and then continued to get worse and was unbearable in the evening. I asked the doctor at the orofacial clinic if I would get pain from flossing with neuropathic pain and he said no, it could just be a coincidence. I have had a problem for a long time with food getting stuck and flossed it a lot. I thought maybe I did damage to the nerve because of it. He also said it is not TN because I do not get electric shooting pain. I have had the pain happen numerous times before when I flossed and I also feel that sometimes I get pain from something sweet which causes very painful burning. I don't know if that is also a coincidence or possibly food is hitting against the tooth and causing the pain. I only chew on my right side but sometimes the food does move to the left side where I get the pain. I was wondering if anyone can tell me if I definitely do not have TN because I do not get the electric shooting pain but do get the terrible burnning. I keep thinking I might need a root canal but I am petrified to do any dental work since the doctor feels it came from dental trauma and the pain is not dental. Does anyone have any advice?
Hi Gizmo,
Can you tell us a bit more about the pain ? Is it just in the area of that one tooth that it burns or is it spreading further ? There are different types of pain and different types of TN , I think I’m correct in saying that if you don’t get the electric pains, then it’s more probable that you could have atypical TN instead of typical TN, but , usually it’s a fairly constant pain that does affect your teeth, but usually more than one, mine is in all my teeth, jaw, cheek, lips, tongue ear etc.
I did have a tooth taken out before I was diagnosed, a back molar, at that time the pain was mostly in just my top teeth, cheek and ear, after the extraction, the lower branch joined in and on occasion the top one too, I sometimes think that pulling that tooth made it worse /spread, my dentist had a 5 minute fight to get it out and did split my gum in the process.
But if its confined to that tooth, then maybe it is the problem, a lot of us think the pain is coming from a tooth and have numerous taken out to no avail, but of course it could be the case that it does need treatment, maybe try getting another opinion and I’m sure other members will tell you their experiences , I’d be inclined to think that if its just one tooth that hurts and the pain doesn’t roam around then the problem is with the nerve for that one tooth itself .
None of us here are doctors, we can just tell you our symptoms of TN, so please if you are not happy with the doctors opinion, ask for a second or even a third opinion ,
Hope you get some relief soon,
Louise
I would suggest seeking out a neurologist that has other patients with TN and going to see them for a second opinion. We are not doctors here, and even if we were, trying to diagnose something like this over the Internet is near impossible. I do wish you the best of luck and hope you find some relief soon. Don’t give up until you find an answer you are comfortable with and understand 100%.
Hi Louise,
Thank you for responding to my post. I get the burning pain most of the time in the one tooth that I was getting food stuck in and flossing a lot. I had a filling and crown on that tooth and a few months later I started to have some pain just in the area that I was flossing. I complained about the pain to my dentist every time I went and he said he didn't see anything wrong. The pain got continually worse and my dentist decided to do another crown next to it to try to fill in the gap in between the teeth hoping that I wouldn't get food stuck and wouldn't have to floss, thus eliminating my pain. After that crown was put it my pain got worse. I went to an endodontist that my dentist says is excellent and he tested the tooth and said it does not need a root canal. My dentist sent me to him 2 more times and he didn't change his feelings.
I sometimes get burning in the tooth exactly above the one that hurts, and it happens at the same time when the pain is in the lower one and sometimes have burning in my upper and lower teeth and gums. which only occurs if the bottom one is burning.
I think the oral facial doctor mentioned atypical pain but he and the nuerologist at the clinic insists is not TN.
Once the pain starts it is constant. My main concern is that I have the right diagnosis but from what I have heard there is no test for TN so how do I know if they are right? My brother had a similar problem with tooth pain and no signs of needing a root canal. He had one anyway and now it hurts only if he touches it. The endodontist told me that if he did a root canal it might not help or it might make things worse. My husband thinks I should do it but I am petrified that my pain will get worse.
Are you on any meds for your pain? If you are do they help? I am puzzled about the gabapentin because I have pain free days but when I do have the pain I don't get relief with the gabapentin. I am wondering if it is a coincidence that I started to have some pain free days as soon as I started the gabapentin since it doesn't help when I have pain.
I would go for another opinion but I really don't know who to go to. I had a bad experience with the first nuero I went to and the one at the clinic is supposed to be very experienced with oral/facial pain. I just have doubts about the diagnosis of nueropathic pain and really don't understand too much about it. Do you know if it is the same as atypical TN? Sorry to write so much but think the more information I give might be helpful in getting an answer.
Gizmo
Louise said:
Hi Gizmo,
Can you tell us a bit more about the pain ? Is it just in the area of that one tooth that it burns or is it spreading further ? There are different types of pain and different types of TN , I think I'm correct in saying that if you don't get the electric pains, then it's more probable that you could have atypical TN instead of typical TN, but , usually it's a fairly constant pain that does affect your teeth, but usually more than one, mine is in all my teeth, jaw, cheek, lips, tongue ear etc.
I did have a tooth taken out before I was diagnosed, a back molar, at that time the pain was mostly in just my top teeth, cheek and ear, after the extraction, the lower branch joined in and on occasion the top one too, I sometimes think that pulling that tooth made it worse /spread, my dentist had a 5 minute fight to get it out and did split my gum in the process.
But if its confined to that tooth, then maybe it is the problem, a lot of us think the pain is coming from a tooth and have numerous taken out to no avail, but of course it could be the case that it does need treatment, maybe try getting another opinion and I'm sure other members will tell you their experiences , I'd be inclined to think that if its just one tooth that hurts and the pain doesn't roam around then the problem is with the nerve for that one tooth itself .
None of us here are doctors, we can just tell you our symptoms of TN, so please if you are not happy with the doctors opinion, ask for a second or even a third opinion ,
Hope you get some relief soon,
Louise
Well, I started out with burning on my eye tooth. I started with TN2. They gave me 2 root canals and the pain never went away. I ended up having Gamma knife and was pain free from that intense burning pain for 3 years. But then it came back. I now have it controlled with Effexor. I still have residual pain there. It hurts in that area EVERY time I floss!!!!!!!!! Just thought I'd give you my experience. As Heather says we cannot diagnose here, but I can suggest you look for another neurologist, one with more experience on TN. He doesn't sound very well versed... Good luck to you.
Min
Thank you Min. What is the difference between TN2 and atypical TN? Did you have any electic shooting pains? How do you find a nuero experienced in TN? I think any nuero will say they treat it but you don't really know how experienced they are. This is the first time I heard of using Effexor for TN. Did a nuerologist prescribe it?
Hope you keep your pain under control.
Gizmo
.
Min said:
Well, I started out with burning on my eye tooth. I started with TN2. They gave me 2 root canals and the pain never went away. I ended up having Gamma knife and was pain free from that intense burning pain for 3 years. But then it came back. I now have it controlled with Effexor. I still have residual pain there. It hurts in that area EVERY time I floss!!!!!!!!! Just thought I'd give you my experience. As Heather says we cannot diagnose here, but I can suggest you look for another neurologist, one with more experience on TN. He doesn't sound very well versed... Good luck to you.
Min
Thank you Heather. I still don't know if it is TN or nueropathic pain like they said. It is supposed to be a good oral/facial clinic that diagnoses people with unusual oral/facial pain.
Gizmo
Heather Calkins said:
I would suggest seeking out a neurologist that has other patients with TN and going to see them for a second opinion. We are not doctors here, and even if we were, trying to diagnose something like this over the Internet is near impossible. I do wish you the best of luck and hope you find some relief soon. Don't give up until you find an answer you are comfortable with and understan
TN 1 is more like lightning zaps out of nowhere - and really just that
ATN is more of a burning, boring pain that can last and last - you can have both
First thing - have dentist or a doc call you in prescription lidocaine mouthwash -- will help some for now.....
Just to let you know Gizmo, I also have the same problem if any food is near my TN pain site.My Neuro recognizes that pain on pooling of food in the affected area is part of my TN. I had to stop using floss and now use those small rubber brushes that clean between the teeth as they are kinder to my pain.
Many Dr's unfortunately only know about the Type I TN, so therefore they do not recognize those presenting with Type II as still having TN. I am afraid to say, although as others have said we cannot diagnose you, your pain and symptoms sound like so many here.
Thank you for the advice Kc. I have the burning, boring pain and they say it is not TN but nueropathic pain. I will find out if nueropathic pain has the same symptoms. I will also try to geth the mouthwash and hope it helps.
Gizmo
Kc Dancer Kc said:
TN 1 is more like lightning zaps out of nowhere - and really just that
ATN is more of a burning, boring pain that can last and last - you can have both
First thing - have dentist or a doc call you in prescription lidocaine mouthwash -- will help some for now.....
Jackie, thank you for your input. I will speak to the nuero about type 2 and see what he says. He is supposed to be very experienced.
Gizmo
Jackie said:
Just to let you know Gizmo, I also have the same problem if any food is near my TN pain site.My Neuro recognizes that pain on pooling of food in the affected area is part of my TN. I had to stop using floss and now use those small rubber brushes that clean between the teeth as they are kinder to my pain.
Many Dr's unfortunately only know about the Type I TN, so therefore they do not recognize those presenting with Type II as still having TN. I am afraid to say, although as others have said we cannot diagnose you, your pain and symptoms sound like so many here.
Gizmo, your story is almost exactly like mine. I had one root canal and then the other tooth behind it started hurting, and then another root canal on THAT one. Then I was sent to an Endodontist. Nothing wrong... Atypical is pretty much Type 2. the burning boring type pain. I didn't have any shocking until right before I had the Gamma knife. That is what prompted the GKRS. It was a doozy. The effexor -my primary doctor happened upon when treating me for depression. Now , the tricyclic anti-depressants are known for their help in treating type 2 pain... nortriptyline and amitryptyline. My neurologist said Effexor (snri) would have been pretty far down on his list to try, but was happy it was working for me. I have been on it for about a year now and it's still working. Eventually I had pain all along my upper teeth. It felt like the roots were hot prongsssss.... The effexor took care of all of that. I hope that answers your questions. :) and Thanks, Gizmo
P. S. I asked my neuro how many patients he has with TN.
Cleo, How do you know so much about this? It is wonderful to have someone with so much knowledge to talk to about my problem. I don't have continuous burning but when it starts it doesn't stop and gets worse and worse and I go to bed with the pain.
When I started on 300mg per day of gabapentin within three days I had a pain free day, which I hadn't had in 8 months. Unfortunately the next day the pain was back with a vengeance..I am now on 300mg 3x a day and get a day here and there of no pain and then the pain comes back. I thought when you have pain and take the gabapentin it takes away the pain. When I have the pain it just continues all day with no relief from the gabapentin. I am wondering if the gabapentin is helping or if I would have pain free days without it. Do you know anything about how gabapentin works? Thank you so much for your help and I am so glad to learn that the doctors I go to are good. If anyone needs to go for an evaluation it is the oral/facial clinic at Nova University
.?..Cleo said:
The Inferior alveolar nerve is the 3rd branch of the trigeminal nerve. Hyperesthesia and allodynia are types of pain associated with nerve pain/ trauma. ATN is nerve pain of unknown cause. You now have a diagnosis of the inferior alveolar nerve being injured which rules out ATN.... without the shocking means the injury is very minimal. without continuous burning means minimal.. minimal nerve damage can heal on its own in time. Time can be 1 month to 1 year or more... neuropathic pain = nerve pain.... I would suggest any else here dental injured in FLA. to connect with where you went for diagnosis and I would suggest you keep going there for further evaluations if needed. There is no quick cure for nerve damage!
Thanks Min. I am glad you are getting relief with the Effexor.
Min said:
Gizmo, your story is almost exactly like mine. I had one root canal and then the other tooth behind it started hurting, and then another root canal on THAT one. Then I was sent to an Endodontist. Nothing wrong... Atypical is pretty much Type 2. the burning boring type pain. I didn't have any shocking until right before I had the Gamma knife. That is what prompted the GKRS. It was a doozy. The effexor -my primary doctor happened upon when treating me for depression. Now , the tricyclic anti-depressants are known for their help in treating type 2 pain... nortriptyline and amitryptyline. My neurologist said Effexor (snri) would have been pretty far down on his list to try, but was happy it was working for me. I have been on it for about a year now and it's still working. Eventually I had pain all along my upper teeth. It felt like the roots were hot prongsssss.... The effexor took care of all of that. I hope that answers your questions. :) and Thanks, Gizmo
P. S. I asked my neuro how many patients he has with TN.
Cleo, I posted an answer to you earlier but do not see it here. Did you receive anything or did I do something wrong when I replied. Please let me know as I would like to respond to you but don't want to repeat it if you received it.
Gizmo
Cleo said:
The Inferior alveolar nerve is the 3rd branch of the trigeminal nerve. Hyperesthesia and allodynia are types of pain associated with nerve pain/ trauma. ATN is nerve pain of unknown cause. You now have a diagnosis of the inferior alveolar nerve being injured which rules out ATN.... without the shocking means the injury is very minimal. without continuous burning means minimal.. minimal nerve damage can heal on its own in time. Time can be 1 month to 1 year or more... neuropathic pain = nerve pain.... I would suggest any else here dental injured in FLA. to connect with where you went for diagnosis and I would suggest you keep going there for further evaluations if needed. There is no quick cure for nerve damage!
So is your diagnosis TN? Did you find a medication that works for you. I still do not know if the gabapentin is working or not. I have the same pain as before except I do get an occasional day of no pain that I didn't have before the gabapentin but why am I still having so much pain on the other days? I am only on 900mg a day and I don' know how much more I can take without the side effects becoming too much for me. I hope there are other alternatives for nueropathic pain but I have problems with medications and am allergic to codeine. Thank youfor your response to me. They are very helpful. Hope you are feelng good.
Gizmo
gizmo said:
Cleo, I posted an answer to you earlier but do not see it here. Did you receive anything or did I do something wrong when I replied. Please let me know as I would like to respond to you but don't want to repeat it if you received it.
Gizmo
Cleo said:The Inferior alveolar nerve is the 3rd branch of the trigeminal nerve. Hyperesthesia and allodynia are types of pain associated with nerve pain/ trauma. ATN is nerve pain of unknown cause. You now have a diagnosis of the inferior alveolar nerve being injured which rules out ATN.... without the shocking means the injury is very minimal. without continuous burning means minimal.. minimal nerve damage can heal on its own in time. Time can be 1 month to 1 year or more... neuropathic pain = nerve pain.... I would suggest any else here dental injured in FLA. to connect with where you went for diagnosis and I would suggest you keep going there for further evaluations if needed. There is no quick cure for nerve damage!
Gizmo,
I would urge you to keep a pain diary for awhile (I just use the notes app on my iPhone right now) to document exactly when you have pain, what the pain feels like, if you think there was anything that may have triggered it, and how bad the pain is on a scale of 1-10. I also document any medications I am taking and exactly what time I take them (some of that is just so I can remember because I’m on a lot of medications right now). You can use just a regular notebook to do this as well, whatever works for you. Make very detailed notes though. Make a follow up appointment with your doctor, and the day before your appointment with your doctor make a bullet pointed list of all of the questions you have. Include questions you have asked here, for example “Why do I have some good days and some bad days? Is that typical on the dosage of medication I’m on, or is it just typical of my condition?” or “If we increase my medication could I see more improvement in terms of more days with less pain, and if so, what kind of side effects might I experience from the increase?” I have found that if you go into a doctor’s office armed with this kind of material you will get leaps and bounds further. It really helps the doctor understand what you are feeling better, and also reiterates the seriousness of your pain. Having the questions written out the day before helps you not forget anything and helps your doctor really answer everything for you in a way that you can understand. Last but not least, when you are at the doctor either take a family member or trusted friend with you and have them take notes, or take notes yourself. Sometimes these conditions and situations can be so overwhelming and you really think you remember everything when in reality you’ve completely missed something, and it may be something important. I have found these things to to endlessly helpful in navigating this journey. Don’t be afraid to advocate for yourself or to have a family member or friend do it for you when you are unable. I feel like the answers you are looking for can only be found through a medical professional, but everyone w here is super helpful and will help guide you to getting answers and supporting you in your journey. I hope this is helpful to you. Wishing you a pain free day today!
Heather, thank you so much for your suggestions. I will definitely use them and bring these questions to my doctor. After two horriblel days so far I am pain free. Just hope it lasts. Every day I wake up stressing about when the pain will start. I guess I will have to learn to deal with it. Hope you are doing well.
Heather Calkins said:
Gizmo,
I would urge you to keep a pain diary for awhile (I just use the notes app on my iPhone right now) to document exactly when you have pain, what the pain feels like, if you think there was anything that may have triggered it, and how bad the pain is on a scale of 1-10. I also document any medications I am taking and exactly what time I take them (some of that is just so I can remember because I'm on a lot of medications right now). You can use just a regular notebook to do this as well, whatever works for you. Make very detailed notes though. Make a follow up appointment with your doctor, and the day before your appointment with your doctor make a bullet pointed list of all of the questions you have. Include questions you have asked here, for example "Why do I have some good days and some bad days? Is that typical on the dosage of medication I'm on, or is it just typical of my condition?" or "If we increase my medication could I see more improvement in terms of more days with less pain, and if so, what kind of side effects might I experience from the increase?" I have found that if you go into a doctor's office armed with this kind of material you will get leaps and bounds further. It really helps the doctor understand what you are feeling better, and also reiterates the seriousness of your pain. Having the questions written out the day before helps you not forget anything and helps your doctor really answer everything for you in a way that you can understand. Last but not least, when you are at the doctor either take a family member or trusted friend with you and have them take notes, or take notes yourself. Sometimes these conditions and situations can be so overwhelming and you really think you remember everything when in reality you've completely missed something, and it may be something important. I have found these things to to endlessly helpful in navigating this journey. Don't be afraid to advocate for yourself or to have a family member or friend do it for you when you are unable. I feel like the answers you are looking for can only be found through a medical professional, but everyone w here is super helpful and will help guide you to getting answers and supporting you in your journey. I hope this is helpful to you. Wishing you a pain free day today!
I am so sorry that you cannot control your pain. I pray that they discover something that will help all TN patients eliminate their pain.
gizmo said:
So is your diagnosis TN? Did you find a medication that works for you. I still do not know if the gabapentin is working or not. I have the same pain as before except I do get an occasional day of no pain that I didn't have before the gabapentin but why am I still having so much pain on the other days? I am only on 900mg a day and I don' know how much more I can take without the side effects becoming too much for me. I hope there are other alternatives for nueropathic pain but I have problems with medications and am allergic to codeine. Thank youfor your response to me. They are very helpful. Hope you are feelng good.
Gizmo
gizmo said:Cleo, I posted an answer to you earlier but do not see it here. Did you receive anything or did I do something wrong when I replied. Please let me know as I would like to respond to you but don't want to repeat it if you received it.
Gizmo
Cleo said:The Inferior alveolar nerve is the 3rd branch of the trigeminal nerve. Hyperesthesia and allodynia are types of pain associated with nerve pain/ trauma. ATN is nerve pain of unknown cause. You now have a diagnosis of the inferior alveolar nerve being injured which rules out ATN.... without the shocking means the injury is very minimal. without continuous burning means minimal.. minimal nerve damage can heal on its own in time. Time can be 1 month to 1 year or more... neuropathic pain = nerve pain.... I would suggest any else here dental injured in FLA. to connect with where you went for diagnosis and I would suggest you keep going there for further evaluations if needed. There is no quick cure for nerve damage!
Cleo, Why are you in so much pain? Do none of the medicactions work for you?
Cleo said:
I did go through an exploratory nerve surgery on my jaw and have been drug free for the last 5 years. An oral jaw surgeon who specialized in oral trauma was the only one saving my nerve from further destruction. On most days I feel the need to rip out 4 of my teeth and half my tongue but I am sane enough to know that my nerve would remain the same....
Anyways. that's why I always keep suggesting when it happens at the dentist.. there are oral surgeons who deal with it.... and the farther you step away from how it happened the worse things can happen and do!