Hi everyone. I have constant burning pain in my right upper teeth. My right cheek feels inflamed and even putting mascara on my eyelashes is painful. Is this typical? Just trying to understand this condition and get to grips with it. Would appreciate anyone sharing how they cope with the constant burning pain which is wearing me out at the moment. I am trying to remain positive with this thing, but scared I could get depressed if there is no relief in sight.
Lucy, you haven't (in this posting) indicated whether you are taking the Amitriptylene that your doctor has recommended. If so, what dose are you on? Has any doctor discussed other meds like Tegretol, Trileptol, or Neurontin? All should be tried (in sequence, not together all at once) until a combination is found that brings the burning down to a level you can tolerate.
As for whether your pain pattern is common: yes, for atypical trigeminal neuralgia, it is at the outset. However, have you ever had Chicken Pox? Have you been evaluated for Shingles? The form of facial pain associated with Shingles is called "post herpetic neuralgia". Although Shingles most often occurs with a painful rash, there are cases where the rash is entirely internal for a period of time.
To help with your concerns and anxiety, I suggest that you do some extended reading in our "Help with Research" tab on the menu above. There is a lot of information there on both types of TN and the issues that surround the disorder. Information is a part of your combat gear, lady. If you're in too much pain to integrate what you read, then ask a family member to read for you and tell you what they learn.
Go in Peace and Power
Red Lawhern, Ph.D.
Site Resident Research Analyst
Lucy, it's been really hard on me, I know where you're coming from. I have had pain in the upper right molars every second of every day for over a year now. I get migraines on the other side, that hurt much more in intensity, but those don't bother me as much because they go away. The non-stop pain drives me out of my mind.
I have found that tasks such as gardening, folding laundry, stuff like that helps me most. It enables me to get lost in the task without having to concentrate on anything. If you find a better answer let me know!
To follow up with what Red said, have you tried any meds yet? Aside from the amitriptyline, I have found that Klonopin helps a lot with the burning pain. My doctor actually has me suck on it for three minutes without swallowing, and swishing the saliva toward my pain area. It does help calm the burning pain somewhat. Don't get the dissolvable ones though - they disintegrate too quickly.
Hang in there, I know how hard it is.
Richard A. “Red” Lawhern said:
Lucy, you haven't (in this posting) indicated whether you are taking the Amitriptylene that your doctor has recommended. If so, what dose are you on? Has any doctor discussed other meds like Tegretol, Trileptol, or Neurontin? All should be tried (in sequence, not together all at once) until a combination is found that brings the burning down to a level you can tolerate.
As for whether your pain pattern is common: yes, for atypical trigeminal neuralgia, it is at the outset. However, have you ever had Chicken Pox? Have you been evaluated for Shingles? The form of facial pain associated with Shingles is called "post herpetic neuralgia". Although Shingles most often occurs with a painful rash, there are cases where the rash is entirely internal for a period of time.
To help with your concerns and anxiety, I suggest that you do some extended reading in our "Help with Research" tab on the menu above. There is a lot of information there on both types of TN and the issues that surround the disorder. Information is a part of your combat gear, lady. If you're in too much pain to integrate what you read, then ask a family member to read for you and tell you what they learn.
Go in Peace and Power
Red Lawhern, Ph.D.
Site Resident Research Analyst
Lucy, were you going to add something? It appears that you posted only a blank line that carried my previous post along.
Regards, Red
Thanks Red for your reply. I am only at the start of my journey. My doctor has prescribed 10 mg Amitryptiline, building up gradually due to the common side effects like dry mouth and hangover in the morning. He has asked me to take them at night as they are also sedative to help with getting to sleep. I have had Chickenpox when I was younger, but I have not had a rash. I know that there is a type of Shingles where there is no rash, but this is quite rare. Is there another way to be evaluated for Shingles? Would this be a blood test? I have heard conflicting reports that if you come into contact with someone who has had Chickenpox, this can bring about Shingles, whilst other reports say this is not the case and will come about when the immunity is low as it is a latent viral condition.
I am just trying to make sense of it all. I appreciate all the support I am getting on this site. Everyone has been so kind and really helped me.
I must have clicked the wrong button. I have added my questions now. Thanks, Lucy
Richard A. “Red” Lawhern said:
Lucy, were you going to add something? It appears that you posted only a blank line that carried my previous post along.
Regards, Red
To answer your questions, Lucy:
(1) The common dose for Amitriptylene is about 75 mg per day in divided doses, at least for the primary condition which it treats which is depression. What surprises me is that this seems to be the first drug he tried. It would be more common to try you on a short course of Tegretol or Trileptal, and add in a tricyclic antidepressant like Amitriptylene only if the primary drugs of choice don't work.
(2) Yes, there is a blood test for active Shingles (Varicella Zoster) virus. In the literature I've read on the subject, there doesn't seem to be a lot of support for the belief that contact with someone who has active Chicken Pox is a frequent initiator of Shingles. I don't think anybody is entirely sure what causes an outbreak. Obviously, if your body system is worn down by fatigue or other factors, you may be more vulnerable to a good many disease processes -- and you can be more sensitive to pain. This is one reason why pain and depression are thought to be "co-morbid" disorders, since they play off each other.
Feel free to come back with other questions. There are many good people here with a wealth of experience to offer.
Go in Peace and Power
Red
Hi Red The reason the doctor has put me on a low dose Amitryptiline is that he says there is evidence that at low doses this drug has an analgesic effect on nerve pain, not to be used at antidepressant levels, which would not be effective. I am in the UK, so this is General Physician as the primary contact, not a Specialist, however the GP practice is a teaching practice, so may be more reliable than the average. At least he recognised the symptoms, although his diagnosis was AFP, he did say that this was an atypical type of TN, so seemed clued up. I feel that I need to ask him to send me for tests, as the thing I find disconcerting is that I have been given a drug, whilst I have had no test results to exclude any other reason for this condition. I would rather go for tests and if nothing can be found start drug treatment then, but feel it is not the right way to treat something without the full picture.
Richard A. “Red” Lawhern said:
To answer your questions, Lucy:
(1) The common dose for Amitriptylene is about 75 mg per day in divided doses, at least for the primary condition which it treats which is depression. What surprises me is that this seems to be the first drug he tried. It would be more common to try you on a short course of Tegretol or Trileptal, and add in a tricyclic antidepressant like Amitriptylene only if the primary drugs of choice don't work.
(2) Yes, there is a blood test for active Shingles (Varicella Zoster) virus. In the literature I've read on the subject, there doesn't seem to be a lot of support for the belief that contact with someone who has active Chicken Pox is a frequent initiator of Shingles. I don't think anybody is entirely sure what causes an outbreak. Obviously, if your body system is worn down by fatigue or other factors, you may be more vulnerable to a good many disease processes -- and you can be more sensitive to pain. This is one reason why pain and depression are thought to be "co-morbid" disorders, since they play off each other.
Feel free to come back with other questions. There are many good people here with a wealth of experience to offer.
Go in Peace and Power
Red
Lucy your doctor is certainly correct about the dual analgesic effect of the tricyclic antidepressants. They are frequently used with ATN pain -- but also frequently used IN ADDITION to one of the anti-seizure or anti-convulsant drugs, and not usually used as the first line of treatment.
You might also want to be aware that there are no "tests" which conclusively support a diagnosis of TN or ATN. MRI can sometimes reveal compressions of the trigeminal nerve by blood vessels. Such imaging can help to confirm a diagnosis of TN, but if no compressions are seen that does not rule out TN. Likewise, many people have such compressions, who have never had a day of face pain in their lives. Patient history and pain patterns are the strongest factor in this class of diagnoses.
Go in Peace and Power
Red
lucylucy said:
Hi Red The reason the doctor has put me on a low dose Amitryptiline is that he says there is evidence that at low doses this drug has an analgesic effect on nerve pain, not to be used at antidepressant levels, which would not be effective. I am in the UK, so this is General Physician as the primary contact, not a Specialist, however the GP practice is a teaching practice, so may be more reliable than the average. At least he recognised the symptoms, although his diagnosis was AFP, he did say that this was an atypical type of TN, so seemed clued up. I feel that I need to ask him to send me for tests, as the thing I find disconcerting is that I have been given a drug, whilst I have had no test results to exclude any other reason for this condition. I would rather go for tests and if nothing can be found start drug treatment then, but feel it is not the right way to treat something without the full picture.
Hi Crystal
Thanks for the advice. I think by concentrating on the gardening or household tasks it will take away from the pain I am experiencing at the moment which will help. It also prevents you from concentrating on the pain, which can amplify it and get you upset. I have been given low dose Amitryptiline, as the doctor has said it has analgesic action in low doses on nerve pain. I have not been given any other drug at the moment. One question, are you still in touch with your dentist or has he ruled out anything to do with the teeth or gums? I came across something on the internet that said if the gums are receding, this can cause pain in the gums. My dentist says I have perfectly healthy teeth, but my gums are receding as a sign of age and wear. I think once you hit menopause, which I have just hit, this can also accelerate. I really appreciate all the kind support and help that everyone has shown on the web site - it has really helped me to deal with this better. I think by being in touch with othe people having the same issues, at least it shows you are not imagining it all, as the dentist kept saying there was nothing wrong which he could see.
crystalv said:
Lucy, it's been really hard on me, I know where you're coming from. I have had pain in the upper right molars every second of every day for over a year now. I get migraines on the other side, that hurt much more in intensity, but those don't bother me as much because they go away. The non-stop pain drives me out of my mind.
I have found that tasks such as gardening, folding laundry, stuff like that helps me most. It enables me to get lost in the task without having to concentrate on anything. If you find a better answer let me know!
To follow up with what Red said, have you tried any meds yet? Aside from the amitriptyline, I have found that Klonopin helps a lot with the burning pain. My doctor actually has me suck on it for three minutes without swallowing, and swishing the saliva toward my pain area. It does help calm the burning pain somewhat. Don't get the dissolvable ones though - they disintegrate too quickly.
Hang in there, I know how hard it is.
Crystal,
Receding gums can indeed cause generalized pain in the mouth. But as far as I've ever read in medical literature, you shouldn't experience nearly the intensity of either a dental abscess or facial neuropathy from that source. Likewise, it would be very unusual for that type of pain to be felt up in the cheek or elsewhere remote from the gums and teeth.
Regards, Red
I never went to a periodontist, but my Endo did the check and my numbers were all 2-4. I wish that were the problem, but I've accepted that it's not a dental problem.
Having said that, now I'm getting pain on the other side, same exact teeth, same type of pain, like a mirror. I called my doctor and he said that doesn't make sense, because it can't cross sides, but I know he's had to of seen this before, being a facial pain specialist for 20 years. So he had me get some x-rays and I'll take them with me and see him next week.
Lucy, at this point you should not have any dental work unless it is visible on an x-ray or puss is oozing out, or something undeniable like that is going on. It took me 7 months of dentists, Endos, and oral surgeons to accept that this was not a dental problem. And I'm still one of the lucky ones because I didn't pull a tooth, though I did get a root canal, twice in fact, because when I first saw my current doctor, we got a new CT (I guess my old one wasn't up to his standards), and he found that my Endo had missed my fourth canal. At the time, I really thought that was going to solve it, but it didn't. It was such a let down.
Hi Crystal It seems you and me both are suffering similar pains in the teeth. Just one question, can you explain what your Endo said about your numbers being all 2-4. I am not sure what this means. I have only seen General Dentists, although I have seen 4 and one who completes root canals. Do these numbers refer to the nerve in the tooth? Thanks Lucy
crystalv said:
I never went to a periodontist, but my Endo did the check and my numbers were all 2-4. I wish that were the problem, but I've accepted that it's not a dental problem.
Having said that, now I'm getting pain on the other side, same exact teeth, same type of pain, like a mirror. I called my doctor and he said that doesn't make sense, because it can't cross sides, but I know he's had to of seen this before, being a facial pain specialist for 20 years. So he had me get some x-rays and I'll take them with me and see him next week.
Lucy, at this point you should not have any dental work unless it is visible on an x-ray or puss is oozing out, or something undeniable like that is going on. It took me 7 months of dentists, Endos, and oral surgeons to accept that this was not a dental problem. And I'm still one of the lucky ones because I didn't pull a tooth, though I did get a root canal, twice in fact, because when I first saw my current doctor, we got a new CT (I guess my old one wasn't up to his standards), and he found that my Endo had missed my fourth canal. At the time, I really thought that was going to solve it, but it didn't. It was such a let down.
The numbers refer to your gums and how healthy they are. Lower numbers are good. The use some tool and press it into your gums between your teeth, and it measures something, they healthy tissue I guess. It has nothing to do with a root canal. For a root canal test, they generally have you bite on something, do a cold test, and do a percussion test (bang your teeth). If you're still not convinced it isn't your tooth, you can have a CT scan done. That's how we found my fourth canal was overlooked during my root canal. It was also a way to double check that I don't have a crack.
Like I said before, if it's a dental problem, it would eventually reveal itself. I know you want it to be dental, but at this point it sounds unlikely. The CT scan can also rule out if you have a cyst or something up there causing problems. An average dentist does not have this capability - I had mine done once at a radiology place, and the other time at a dental school.
When a general dentist or assistant does routine dental cleaning, they probe your gums gently at the sides of your teeth to see how deep the sockets are around the teeth. 2 to 4 is probably "millimeters", and that range is generally considered to indicate healthy gums.
Regards, Red
Crystal, I have pain primarily in the back two teeth in all four quadrants. Not only is the pain bilateral, but it has some unusual behaviours as well, in that the pain sometimes "leaps" from one quadrant to another (it's especially strange when it goes from a lower quadrant to an upper quadrant on the opposite side). When I described my symptoms to my dentist and endodontist, I could see that they were clearly baffled, since what I was telling them didn't match what they knew about anatomy. I asked if they had ever seen anyone else with my exact symptoms and neither of them had. They both referred me to the same orofacial pain specialist and when I asked him the same question, he said he sees patients like me "all the time". Granted, in his line of work, he only sees the most bizarre cases. I'm sure your doctor has to have seen this before as well.
Good luck with your appointment, and let us know how you get on.
Take care,
Chris
crystalv said:
I never went to a periodontist, but my Endo did the check and my numbers were all 2-4. I wish that were the problem, but I've accepted that it's not a dental problem.
Having said that, now I'm getting pain on the other side, same exact teeth, same type of pain, like a mirror. I called my doctor and he said that doesn't make sense, because it can't cross sides, but I know he's had to of seen this before, being a facial pain specialist for 20 years. So he had me get some x-rays and I'll take them with me and see him next week.
Lucy,
I'm not a doctor, but your symptoms sound pretty normal for an atypical patient in that we are all somewhat unique.
In terms of coping long term, I don't know if this has happened to anyone else, but I find that I have acclimated a bit to the pain. I've always had a pretty high pain tolerance, but now that I know what off the chart pain feels like, a level 5 seems pretty manageable. Also, now that I've been dealing with this for a while, I'm getting better at predicting what is going to trigger the pain and how to prevent it. I've also learned the hard way what not to do. There are times, of course, when absolutely nothing helps and you just have to wait it out. That isn't any fun, but you get through it, somehow.
It may not seem like it now, but you are on the right track. This is such a wonderful group to bounce ideas off of and learn from and we are all here for you. You just have to hang in there.
Take care,
Chris
Hi Chris
Thanks for your advice on how to deal with this long term. I really appreciate you taking the time to reply and feel comfort in a group of others going through the same thing. I think the worst thing is dealing with people who are not aware of this condition looking at you blank, particularly all the dentists I have been to before finding out about this condition. Thanks again.
Chris K. said:
Lucy,
I'm not a doctor, but your symptoms sound pretty normal for an atypical patient in that we are all somewhat unique.
In terms of coping long term, I don't know if this has happened to anyone else, but I find that I have acclimated a bit to the pain. I've always had a pretty high pain tolerance, but now that I know what off the chart pain feels like, a level 5 seems pretty manageable. Also, now that I've been dealing with this for a while, I'm getting better at predicting what is going to trigger the pain and how to prevent it. I've also learned the hard way what not to do. There are times, of course, when absolutely nothing helps and you just have to wait it out. That isn't any fun, but you get through it, somehow.
It may not seem like it now, but you are on the right track. This is such a wonderful group to bounce ideas off of and learn from and we are all here for you. You just have to hang in there.
Take care,
Chris
Hello Lucy,
Im 31 and have had constant pain in the left cheek for over 3 years now. It is a burning type pain that would bring you to your knees... It feels deep in the tissue and almost stings in nature. The area is also numb in my case, which ive heard is rare with this illness.
How do i cope ? Well medications are paramount ! (see neurologist) You have to keep it at bay with medications ! but then this in turn leaves you with side effects... But this is the better of 2 evils as I can not function without medication as the pain is incredibly strong. If it gets bad I find lying down with my ipod and some soothing music in the dark can help a great deal. You also need to keep things simple by trying not to over complicate things.. By resting your mind you are able to bring your stress levels down which in turn can bring down your pain levels.
I havent found siginifcant relief from acupuncture, osteopath, chinese medicine, trigger point injections, physiotherapy.... but this said some of these might bring your pain down from a 5/10 to a 4/10 and clear your mind a little... I did notice that coming out of a session with the osteopath my mind would feel much clearer (not normal again) but within an hour or 2 it returns back to this state.
Now you also need to give yourself something to do and preferably with someone else, small groups or alone.. I find large groups can be too much ... So find a hobby, something you like, something you are good at and get lost in it a few hours a day or week. This will amazingly start to give you some value in your life and a sense of self worth.. I personal have gotten back into drawing and painting and it does feel good to be producing something tangible :)
Hope some of this helps
Luke