It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Neuropathy Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 02-09-2004, 11:12 AM   #1
Newbie
 
Join Date: Feb 2004
Posts: 5
ruthb HB User
facial pain

Hi, I feel guilty to be posting at all having read about what you are all going through. But - I am desperately seeking someone who has or has had atypical odontalgia. I have basically had raging toothache for five months and am not told that my pain is not dental but neurological - possibly some nasty chain reaction set off by having a root canal back in september. I am now seeing a specialist but the treatment (nortryptyline) isn't having much effect ... Any advice very,very gratefully received.

 
Sponsors Lightbulb
   
Old 02-09-2004, 08:18 PM   #2
Senior Member
(female)
 
Join Date: Oct 2003
Posts: 217
Ann123 HB User
Re: facial pain

[Yes, yes,yes - raging toothache after root canal. Going on 10 months now. Takes awhile to rule out all the dental issues. I actually had a tooth extracted over this- a tooth that had been root-canaled and crowned. Pain just moved to the next tooth. My neurologist wrote trigeminal neuralgia as my diagnosis. It has to be atypical though as it is not the jolts of pain followed by relief rather it is constant. I feel for you- this is nothing to be guilty about posting - this tooth pain can drive one crazy. You are not alone- I have "spoken" with other people on the internet with similar symptoms. In real life - one person. Hers calmed down after a year. The other people I do not know if they got better as they did not post anymore.
Hopefully that means they did. I have heard of treating it with what you mention. I hope it will work for you. I think it takes time to have full effect.
I am taking Neurontin- this does help take the edge off- it has to be built up gradually. I also take Ativan at night - it helps but is addictive so I only take 1 mg at night. I started Lexapro as well 2 weeks ago - also seems to help somewhat-the doctor says full effect would take about a month. I hate taking all these medicines but chronic pain can mess up your brain signals so I take the pills. The doctor is trying to raise seratonin Ativan and Lexapro)and reduce adrenaline (Neurontin). The pain has caused clenching and TMJ pain for me as well so I am working with the dentist with splints. Stress should be kept minimal, adequate sleep is important, a good diet, vitamins, moist heat feels good to me. Anyway, that is the best I can offer. Is your pain localized to one or two teeth or does it move around? mine moves occasionally but mostly stays in lower right molars. Feel free to ask any questions. I know what you are going through. Take care.

 
Sponsors Lightbulb
   
Old 02-10-2004, 03:10 AM   #3
Newbie
 
Join Date: Feb 2004
Posts: 5
ruthb HB User
Re: facial pain

Thank you for replying. I too spent ages having (unnecessary) things done to my teeth before being referred to a specialist - not a neurologist though, but a maxillio facial specialist. My pain started off localised in two teeth (upper jaw, first molar on each side), and felt like toothache although with a very distinctive burning pain. As it progressed the whole upper jaw became affected - the pain was worse around the two molars but radiated forward to the front teeth so that my upper jaw felt like it had painful pins and needles at all times, and the two molars just hurt like mad. Since taking the nortryptyline (this is something called a tricyclic antidepressant, although the docs insist that the don't think this is in my head but there's something in the drug that calms down nerves) it has - I think - changed the pain, although not removed it. Now, rather than acute burning pain it feels like my whole upper jaw is in spasm - the muscles or whatever under the palete pulse and twitch, putting pressure on my teeth which feel just like someone is trying to pull them out. The pressure pushed down on my teeth and up under my nose, like my head is just going to blow apart. Wierd, I know. And odder still, the only thing that seems to help is chewing gum. Does your doctor suggest that at some point the drugs will calm down your pain and you will be able to come off them? or is this a forever thing? To be honest I feel just exhausted by this - its really hard trying to keep your life going when you are in pain 24/7.


Quote:
Originally Posted by Ann123
[Yes, yes,yes - raging toothache after root canal. Going on 10 months now. Takes awhile to rule out all the dental issues. I actually had a tooth extracted over this- a tooth that had been root-canaled and crowned. Pain just moved to the next tooth. My neurologist wrote trigeminal neuralgia as my diagnosis. It has to be atypical though as it is not the jolts of pain followed by relief rather it is constant. I feel for you- this is nothing to be guilty about posting - this tooth pain can drive one crazy. You are not alone- I have "spoken" with other people on the internet with similar symptoms. In real life - one person. Hers calmed down after a year. The other people I do not know if they got better as they did not post anymore.
Hopefully that means they did. I have heard of treating it with what you mention. I hope it will work for you. I think it takes time to have full effect.
I am taking Neurontin- this does help take the edge off- it has to be built up gradually. I also take Ativan at night - it helps but is addictive so I only take 1 mg at night. I started Lexapro as well 2 weeks ago - also seems to help somewhat-the doctor says full effect would take about a month. I hate taking all these medicines but chronic pain can mess up your brain signals so I take the pills. The doctor is trying to raise seratonin Ativan and Lexapro)and reduce adrenaline (Neurontin). The pain has caused clenching and TMJ pain for me as well so I am working with the dentist with splints. Stress should be kept minimal, adequate sleep is important, a good diet, vitamins, moist heat feels good to me. Anyway, that is the best I can offer. Is your pain localized to one or two teeth or does it move around? mine moves occasionally but mostly stays in lower right molars. Feel free to ask any questions. I know what you are going through. Take care.

 
Old 02-10-2004, 05:43 PM   #4
Senior Member
(female)
 
Join Date: Oct 2003
Posts: 217
Ann123 HB User
Re: facial pain

Hi Ruth,
No don't feel it is in your head because you've been prescribed an antidepressant. Lower dose antidepressants are often used to treat neurological pain. The mind would have to be pretty powerful to imagine all that, huh?
Gotta say, I couldn't possibly chew gum-probably cuz my lower teeth are the ones that hurt.

I think they are calliing yours odontalgia rather then trigeminal neuralgia because yours is on both sides. T.N. seldom crosses over to both sides, although it can. (that is called mirror pain). My pain does feel like a burning toothache and it will radiate when it is bad- to neighboring teeth, the teeth above, the jaw, the ear. what fun, huh?

Are you from the U.S.? If so, have you considered a neurologist who sees a lot of this type of thing? There are other medicines to try that may be more effective.

The doctor has indicated he expects the pain to calm down. He keeps saying when he finds the proper meds for me to be comfortable, he will leave me on them for 6 months and then start tapering off to see if the pain has gone into remission. 6 months sounds long to me but I will argue that point with him when I get there. My friend's pain was completely gone in a year.

You will see better days. I am better than in the beginning - don't know if it is the meds, better coping skills or what. The pain is less intense quite often. Nerves take a long time to heal. Have you been back to your doctor to explain how the pain has changed since taking the medicine?

Out of curiosity, was yor root canal on top or bottom? Did you have any unusual reaction to the shots they numb you with? - like you felt an electric shock like type of pain when you got the shot. Also, you didn't happen to be on any antibiotic during any of your dental treatments, did you?

Whoever would of thought of such a thing as this. Certainly not me. Hang in there, take care of yourself. It will get better.

 
Old 02-11-2004, 05:42 AM   #5
Newbie
 
Join Date: Feb 2004
Posts: 5
ruthb HB User
Re: facial pain

Hi Ann,
For me one of the many frustrating things about this illness is that nobody seems to know quite what is going on. Atypical Odontalgia literally means mystery toothache - very helpful! I was told it wasn't TN (thank goodness!) because of the type of pain - burning and pinching continuously rather than short sharp shocks of agonising pain ... I am from London, England, and I guess one confusion is that doctors will handle things differently, and drugs have different names.
My doctor also says this will settle, and when it has I can wean myself off the meds ... Like you I feel that this is all very long winded and they are just chucking pills down me randomly, but also feel I must give them a try before demanding second opinions. I also know people who have had long term pain after dental treatment that has, eventually, gone. Everyone's symptoms seem unique though. For example there is a horrible thing called burning tongue syndrome where your tongue feels like its permanently burnt. My tongue is absolutely fine, but one of the key features of BTS is that you feel fine when you wake and get worse and worse over the day. My toothache is like that - fine when I wake, horrific by the time I go to bed.
In answer to your questions: my root canal was on the top teeth, bottom teeth no trouble at all, I had no pain during the procedure and no problems with the injection, and have had fillings and a crown in the past (no root canal though) with no problems from the same dentist. I had four courses of antibiotics (amoxycillin) between September and January - with the first courses all the pain magically went after I had taken them but then came back, last lot didn't help. My doctor - who is qualified as a neurologist and a dentist - said that he thinks my initial problem was dental and there was infection but that that developed into what I have now, which is why the last course of antibiotics didn't help. I just don't know, it certainly feels like an infection although when I told him that he said that all his patients said that ... I feel I have to trust him for now. He says he thinks I will be OK within 2/3 months and I have decided to give him that amount of time before moving on. Trouble is he's the head of the relevant department at the UK's biggest specialist dental hospital so I am kind of starting at the top of the tree.
Can I ask one question - the drugs you mentioned, what are they for? I mean, what are they meant to do? Are they straight painkillers, or are they supposed to be doing something to settle the nerves? How long have you been on them for? And have you seen a pain managment specialist - in the UK they seem v. keen on these people who teach you coping/distraction techniques. I am v. sceptical - I don't want to cope with the pain, I want it to go away. But then I also want to win the lottery ... Good luck and thanks for responding.

 
Old 02-11-2004, 08:09 AM   #6
Newbie
 
Join Date: Feb 2004
Posts: 5
ruthb HB User
Re: facial pain

Hi Ann,
For me one of the many frustrating things about this illness is that nobody seems to know quite what is going on. Atypical Odontalgia literally means mystery toothache - very helpful! I was told it wasn't TN (thank goodness!) because of the type of pain - burning and pinching continuously rather than short sharp shocks of agonising pain ... I am from London, England, and I guess one confusion is that doctors will handle things differently, and drugs have different names.
My doctor also says this will settle, and when it has I can wean myself off the meds ... Like you I feel that this is all very long winded and they are just chucking pills down me randomly, but also feel I must give them a try before demanding second opinions. I also know people who have had long term pain after dental treatment that has, eventually, gone. Everyone's symptoms seem unique though. For example there is a horrible thing called burning tongue syndrome where your tongue feels like its permanently burnt. My tongue is absolutely fine, but one of the key features of BTS is that you feel fine when you wake and get worse and worse over the day. My toothache is like that - fine when I wake, horrific by the time I go to bed.
In answer to your questions: my root canal was on the top teeth, bottom teeth no trouble at all, I had no pain during the procedure and no problems with the injection, and have had fillings and a crown in the past (no root canal though) with no problems from the same dentist. I had four courses of antibiotics (amoxycillin) between September and January - with the first courses all the pain magically went after I had taken them but then came back, last lot didn't help. My doctor - who is qualified as a neurologist and a dentist - said that he thinks my initial problem was dental and there was infection but that that developed into what I have now, which is why the last course of antibiotics didn't help. I just don't know, it certainly feels like an infection although when I told him that he said that all his patients said that ... I feel I have to trust him for now. He says he thinks I will be OK within 2/3 months and I have decided to give him that amount of time before moving on. Trouble is he's the head of the relevant department at the UK's biggest specialist dental hospital so I am kind of starting at the top of the tree.
Can I ask one question - the drugs you mentioned, what are they for? I mean, what are they meant to do? Are they straight painkillers, or are they supposed to be doing something to settle the nerves? How long have you been on them for? And have you seen a pain managment specialist - in the UK they seem v. keen on these people who teach you coping/distraction techniques. I am v. sceptical - I don't want to cope with the pain, I want it to go away. But then I also want to win the lottery ... Good luck and thanks for responding.

 
Old 02-11-2004, 06:01 PM   #7
Senior Member
(female)
 
Join Date: Oct 2003
Posts: 217
Ann123 HB User
Re: facial pain

Hi Ruth,
Yeah, doesn't matter what they call it- it is all the same; they can't cure it so they just try to treat the pain. I've heard the terms phantom tooth pain and atypical facial pain used also to explain it. It is frustrating because there is that fear they are missing some horrible abscess or something. I think my doctor put trigeminal neuralgia just to have something to tell the insurance company. It is not the electric shock jolts. The continuous burning they call atypical T.N. I also feel okay when I wake up and it gets worse as the day wears on.
I did not at all mean to imply you were not getting the best treatment when asking about your shots or the antibiotics. I was just curious because I had an electric shock with my shot and the doctor thinks the dentist damaged a nerve when that happened. Also I was on an antibiotic for another condition and have since read that certain antibiotics and dental treatment can equal a neurotoxic reaction in the body. I know it doesn't matter but I stiil look for the reason behind this. Interesting that your root canal was on your top teeth where your pain is and mine was on the bottom and that's where my pain is.
Given his credentials, I am sure your doctor has seen a lot of this and knows as well as anyone else what to try. There is no magic cure. I am not interested in jumping on the doctor merry-go-round myself. It seems smart to stay with one, build a rapport and trust with each other. I am sure if your doctor decides this medicine you are on is not going to help enough he will try others. That is what mine did. And that is good - I'd prefer to be as conservative as possible.

I have not seen a pain specialist, nor do I intend to unless I am referred there by my present doctor. Here pain docs are more about giving the narcotic drugs which I am not ready to try. And a lot of the pain doctors treat people like drug-seekers if they are not referred to them by another doctor.

The drugs I am on - Neurontin was the first he tried - this is an anti-seizure med. I don't have seizures. But anit-seizure meds are what are prescribed often to treat nerve pain. It has agreed with me well; it does not with everyone. The other drug Ativan is a benzo; he gave this to me when I said I was not sleeping well-I take it at night to get a good nights sleep. This can be addictive so he is strict that I only take a small dose at night. The third which I just started a couple weeks ago is an anti-depressant; it is of a different class antidepressant than you are on. It is an SSRI, (Selective Seranton Reuptake Inhibitor). My doctors theory is that fighting chronic pain (I waited too long to seek drug treatment) has caused an unhealthy amount of adrenaline in my body - he says that needs to be brought down by raising the seratonin. Deep sleep raises seratonin (thus the Ativan) as well as this type of antidepressant. Anyway that is my treatment so far.
It has calmed down the pain. Hope if the pain ever goes away withdrawal from these meds won't be a downhill battle.
Coping with the pain is what I tried first. Relaxation and such. It was not enough. I thought I could get it under control myself- wrong.
Take care of yourself, hope you had a good day.

 
Old 06-27-2004, 06:39 AM   #8
Senior Member
(male)
 
Join Date: Jun 2004
Location: Brisbane, Australia
Posts: 185
dale2004 HB User
Re: facial pain

This all sounds very familiar. I had a really big abscess infection a few months ago and since had 4 teeth removed (the last one only a week ago). However, the pain is still there with an excruciating ache right down the left side of my lower jaw. My dentist took a look at it yesterday morning and said she can't see anything wrong with the teeth themselves but one of the sockets may be slightly infected so she packed it and gave me antibiotics. She said it may also be a symptom of TMJ but I hope the antibiotics will solve this because I don't think this is the type of pain I can learn to live with.

Do you find that dental work makes you feel worse? I started to feel a little better a few weeks ago and then I had a straightforward cleaning of my teeth by my dentist and afterwards I was in excruciating pain which hasn't really settled down. I sometimes thought I was been a bit of a hypochondriac thinking I have pain after a simple clean but the pain is real and quite severe. I have also wondered that I might have a mild form of TN as I have heard stories about people with TN having loads of their teeth extracted only to find that the pain was still there or simply moves to the adjacent teeth which is exactly what is happening to me. I just can't believe this is actually happening and really don't know who to turn to.

 
Old 06-27-2004, 08:17 AM   #9
Senior Member
(female)
 
Join Date: Oct 2003
Posts: 217
Ann123 HB User
Re: facial pain

Have you seen an oral surgeon or is a general dentist doing all of these removals? It is possible your abscess infection has not entirely cleared up. I would rule out this possiblility first with an oral surgeon if you have not already done so as that can be a serious matter. Sometimes stonger antibiotics are needed. If you have any swelling or fever, definitely pursue that as a probable cause of your pain.

If it is not a lingering infection, then your occlusion could be changed from the teeth removals causing clenching, grinding, thus the tooth pain. A night guard or splint could help this. Your nerves could be irritated or bruised from all the dental work and a trip to a neurologist who understands these issues could be helpful in treating the pain.
Oral surgeons and endodontists often know of such neurologists if you have one of those maybe they can help you find one.
I wish you a speedy resolution.
ann

 
Old 06-27-2004, 11:50 AM   #10
Senior Member
(male)
 
Join Date: Jun 2004
Location: Brisbane, Australia
Posts: 185
dale2004 HB User
Re: facial pain

Hi Ann, thanks for responding. All the pain started in March and I had all of the removals done by a general dentist, plus two root canals which failed. It was the four incisors on the bottom jaw, three of them had abscessed and the other one had a dying nerve or something. There was no decay in there it was all due to a blow to the face I had sometime ago. But now the next teeth along are starting to hurt. My dentist thinks it could be just the socket which is painful and can irritate some of the teeth around it (hmm not sure?!?) and it should calm down once the socket has closed up - I hope so as I have started to get a bit worried.

I find it seems to be irritated by the wind (I have just come in from the wind now and it's hurting quite bad), when I brush my teeth, when I eat and even when I talk. It's probably worth noting that I didn't have this kind of pain prior to the abscess except for some sensitivity.

What is an oral surgeon? I live in the UK and have never heard of one. Are they different to a general dentist?

You mentioned that the nerves can be irritated or bruised from dental work, that's interesting. Do you know if this is something that can just rectify on it's own over time or is it something that often needs a helping hand? What kind of symptoms would I get?

I am also on the waiting list to see an occlusion specialist at the hospital about my bite. I get a lot of neck and ear pain (hyperacusis) which could be a attributed to a faulty bite.

I know that for some people on these boards my problems are so minimal in comparison. I think that not knowing is often the worst bit. I'm just worried that this may be something that can't be fixed as I don't think I could learn to live with it without ripping my own head off!

Thanks for the information Ann - I appreciated it!

Last edited by dale2004; 06-27-2004 at 11:53 AM.

 
Old 06-28-2004, 06:27 AM   #11
Senior Member
(female)
 
Join Date: Oct 2003
Posts: 217
Ann123 HB User
Re: facial pain

In the US, oral surgeons, are specialists in extractions and diagosing injuring/infection in the mouth area. I do not know what kind of specialists are in the UK. We also have specialists (endondontists) who specialize in root canals.

Your pain sounds like tmj or tri****nal nerve pain, or it could be still the infection lingering. All of these things can cause the type of pain you are having so diagnosis can be difficult. I am sorry; not knowing is indeed the worst thing. Try antiflammatory medicine- that should help the neck inflammation. Hopefully your next specialist should be able to help, but I would also push to be able to see a neurologist if you do not have oral surgeons there.

 
Old 06-28-2004, 07:13 AM   #12
Senior Member
(male)
 
Join Date: Jun 2004
Location: Brisbane, Australia
Posts: 185
dale2004 HB User
Re: facial pain

Hello Ann, thanks for the reply. I'm hoping it's just a simple infected socket. I have started taking the antibiotics on Saturday but haven't noticed any relief yet. I do know that sometimes it can take a few days to start to feel any benefit. I was speaking to my mother yesterday on the telephone and she told me that each time she has had a tooth extracted she was in pain for three to four weeks afterwards. She even went back to the hospital a few days later claiming that the surgeon must have removed the wrong teeth because the pain in the other teeth was so bad. It helped to reassure me a bit that I'm not turning into a complete nutcase.

I'm going to make an appointment with my GP to discuss this with him. Although I hate going to see him as I think he is the most unsympathetic person in the world. I guess only time will tell.

Thanks.

 
Old 06-29-2004, 04:27 PM   #13
Junior Member
(female)
 
Join Date: May 2004
Posts: 45
plkelly HB User
Re: facial pain

Hi All!
Over the past 9+ years I've had pain that has been diagnosed as TMJ and/or TN. Won't go into all the details, but just wanted to note for Dale and Ruth (Hi, Ann--we've chatted before) that my pain started after a badly placed crown on an upper back tooth. I didn't feel any pain when I was anesthesized, but when they replaced the temporary with the permanent crown, I had the electrical pain Ann described. My pain is in both upper and lower jaw, extending when it's bad into my ear and just below my nose. Not constant, but several times a day, usually. After working with my dentist on that tooth for about 3 or 4 years, we finally decided to remove it. He tried everything, (I think most dentists are against removing permanent teeth unless they really have to) but the tooth was always loose and sore and he thought it might be the source of my pain. It wasn't.
I am now going to an orthodontist/facial pain/TMJ guy who is working with my regular dentist. He put me in a splint 24/7 and the pain went away within 6 weeks. I'm now in braces. Recently had a bad month with almost constant pain, but the ortho thinks it was the teeth temporarily moving into a temporary position that caused it. It's OK now. He also noted the tight knot in my jaw muscle and prescribed a muscle relaxer that I take at night. I have taken Tegretol for the shooting pains I get (another anti-seizure drug). and Lexipro for anxiety.
Dale, I also see a chiropractor who uses a very gentle method of care. My disc (C5) goes out in my neck and contributes to the pain. She told me to always come see her after flying or having dental work because those chairs are the worst on your neck. I know she's right--sometimes when my pain is really bad I can ease it a little by placing my fingertips at the base of my skull and leaning my head back a little. (I found this out accidently by making dramatic gestures when the pain was so intense.) The ortho told me I am putting C5 and the one above it back in place when I do that.
Hang in there--it will get better.
Work with a doctor you trust and give him time to know your case inside and out. I have stayed with the same doctors, except for my first dentist. He essentially told me the pain was all in my head and I never went back there. And I had been his patient for 17 years.
Try to stay calm, don't be afraid. This too shall pass.
Patsy

 
Old 06-30-2004, 08:43 PM   #14
Newbie
 
Join Date: Jun 2004
Posts: 4
puggiegirl HB User
Unhappy Re: facial pain

I too have atypical facial pain. Had a crown, then a root canal then the tooth pulled and then the worst pain of all in the tooth extraction site. It burns like the devil. I have been through lots of med's, acupunture, herbs, bio feedback, hipnosis. Nothing worked. The one thing that worked the best was prozac, but even that has not worked this last year. I am in a huge flare up. I am trying wellbutrin and klonopin along with the prozac. Has anyone tried Wellburtin for nerve pain. I am interested to see if anyone has had any luck with it.

 
Old 06-30-2004, 11:07 PM   #15
Senior Member
(female)
 
Join Date: Oct 2003
Posts: 217
Ann123 HB User
Re: facial pain

No never tried Wellvutrin. My doctor prescribed Lexapro and an anti-seizure med like Patsy's did. Mine was Neurontin though. Have you consulted with a neurologist? Man so many stories of pain after the dentist. I never would of even thought of it until it happened to me. hope your flare up subsides soon.
Ann

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Facial Migraines not Sinus Infection shurluk Sinus Problems 21 06-14-2009 10:13 AM
Burning/numbness nerve central pain & wheal & flare reaction/tmj/oro-facial pain vital33 Neuropathy 4 03-11-2008 08:11 PM
nerve central pain & wheal & flare reaction/tmj/oro-facial pain vital33 Neuromuscular Diseases 0 02-03-2008 01:17 AM
10 years of inflammation and facial numbness trucky Dental Health 8 09-26-2006 09:38 AM
Just diagnosed with facial neuropathy prairie_dawn Neuropathy 0 09-15-2006 10:42 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 05:44 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!