Plz help-Anyone here heard of Atypical Odontolgia-teeth nerve pain
 

I was just recently dx'd with this. It is a form of TN. The pain is in the teeth and is pretty much constant. It is a dull aching pain ranging in severity. I'v found that most dentist are pretty much clueless about AO. From what I have learned, it seems the only treatment for this is older anti-deps such as Amitriptyline. Right now, I am trying the cayenne pepper route(zostrix). I hear it is common but rarely dx'd right.

No sharp shooting pains just almost constant dull aching pain around the teeth and gums. No trigger points either. I think I'm losing my mind at times.

Has someone out there dealt with this and if so, what was your course of action.

Also, x-rays show nothing is wrong after many dental procedures.

Thx guys:confused:

Atypical Odontolgia ? That is a new term to me. I have heard of Atypical before but seems to be different then what you describe just the teeth .
I am very curious to learn any info you would care to share.
I find many dentists are clueless on T.N. in general so one knowing about Atypical Odontolgia must be next to impossible. I am sorry you are dealing with all this.
I have AD , it affects my lower gums lower teeth inside of mouth and out side my cheek lower lips on my right side. food rubbing on my gums and stuff really nail the pain on high.
I wish I could help with a course of action but I can only offer advice and that is to find a med or combo that helps manage the pain. perhaps see a neuro and most for sure find a pain doc who can help you control the pain.
Do you know what or how you got this? dose the change in blood flow trigger more pain ..like if you have your head tilted down bending over >
sending healing thoughts .hope you let us know how you are doing nd keep us up dated, I and others would like to learn about this new form of T.N.
Many blessings Scoopy
:hug:
PEACE
BMW

Hi Scoopy,
One doctor's "Atypical Odontolgia" may be another doctor's "Atypical TN" - you know the story about the 5 blind men and the elephant, right? I agree with BMW - get to a neurologist if you can, and see what they have to say. I am so sorry that you are hurting - it must be very difficult. Has anyone prescribed anti-seizure meds yet? Sometimes they can help, alongside the antidepressants and the opiates.
Best of luck, and please keep us posted on your journey - you are more than welcome here on this forum - if there is anyone who can understand what you are feeling, it's one of us.
hugs :hug:
Lily

Thx Lily and Bmw for your kind words. I do see a neuro in oct. Right now I feel very down n depressed. Are there any success stories that you guys have heard. It seems must of the posts I read are people still in pain after trying multiple drugs, etc.

In a nut shell my symptoms are-

1.Dull aching pain in gums coming from mainly 3 spots in mouth-zero facial pain

2.The pain is pretty much much constant but do have times with no pain

3.The pain varies in intensity and changes places

4.Pain meds such as vicodin have no effect

Have you guys ever heard of this before? I'v researched this a lot and Atypical Odontolgia kinda fits me to a tee.

Thx again,
Shannon

Well I consider myself a success story. tho NOT pain free. I think there is no cure for this type of disease. it has many types and many varied pain symptoms tightness ,to numb to burning to stinging. each of us are as different with different areas of pain... finding a way to decrease the pain /mannage the pain as best possible ..so that one is able to have a bit of their former life back I think those are happy endings. thats just my opinion .
There are a number of meds that are very helpful for lots of people
Tegretol , Trileptal (which if a form of tegretol) , Dilantin, Neurontin
have you been prescribed any of those ?
Please Do not be so down and depressed . I know reading all the threads and stories here can be scary and over whelming :hug: . not all of it is bad tho. Your going to be okay... you have all of us here . you are going to see a neuro doc ,
Maybe the neuro will want to do an MRI that would be a wise move to do ... you have a good start in a good direction and all of us are here for you . :hug: :grouphug: so try not to worry to much and be so down .:hug:
there is hope and tomorrow is a new day and a step closer to finding a way to lessen the pain.
hope you have a nice night.
PEACE
BMW

Thx again for your support. No, I hav'nt yet tried any of the meds you've mentioned yet. Currently, I'm trying this cayenne pepper cream. Kinda alternative but I hear it has been used with mouth/gum pain with some success.
What meds worked for you?
Peace,
Shannon

Hello, Yes, I have heard of this. I had the same experience. I had a severe locallized pain over an extracted tooth. I'm happy to say that my pain has subsided somewhat (and I hope it does not return). After going to numerous doctors, I finally did find one who told me that I might have Atypical Odontalgia which is more localized than trigeminal neuralgia. This doctor told me that one option would be to do a trigger point injection (I think some type of nerve block) and he said that in some cases the pain can be eliminated permanetly with this. How did your pain start?

Oh my god I think this is what I have


Since October 2009:

- Pain in #20 tooth only
- Started out as a dull ache followed by a weekend of intense pain, hospital couldn't help
- Saw dentist, was given nerve block
- Saw doctor, was told to get MRI

- Got MRI, came back normal, Dx'd with 'trigeminal neuralgia', given Carbamazepine -- uneffective after several months, discontinued

- Doctor Rx'd Klonopin (1mg) and Xanax (0.5mg) to help sleep at night. Successful in reducing pain and helping me sleep. I never take this during the daytime.

- Later I got insurance, doctor Rx'd Morontin and then Lyrica (not together of course) and neither was effective

- Still take Klonopin/Xanax combo at night. No real issues with that (as far as addiction or abuse or anything).

- Opiates were tried (hydrocodone/oxycodone) but neither was effective at pain relief. Discontinuned.

- Nerve blocks were tried (lidocaine+marcaine), effective at numbing the entire region for 3-5 hours, but once it wore off pain was back.



Current standing:


- Pain is minimal but same tooth hurts if I wiggle it. Sometimes a random shock into my jaw area.

- Last winter was terrible and the warmer months have seemed to be better.

Illana, my pain started after many dental procedures. I finally pulled the teeth but the pain remains.

Whoknows, they say good results may be achieved using Amitriptyline in cases of AO.

Have you tried that yet?

I will ask at next doctor visit. I also want to try trileptal

scoopy, it sounds like you and I are suffering the same complaint. Tooth #12 had had a root canal 3 1/2 years ago. It always hurt. During July the pain increased. My family dentist and I had talked over the years about the possibility of the root being cracked. He said no way to tell on an xray only way to know was to pull it. Anyway, I had the tooth extracted and knew immediately that something was wrong. Burning and stinging in mouth, sinuses and eyes. My sense of smell was off (the air conditioning smelled like burning chemicals - thank heavens that symptom resolved itself). Bridge of nose felt like I'd been hit with a baseball bat. All of my upper teeth hurt. Hurt in ethmoid sinuses, top of head, back of neck. Was in AGONIZING pain. Five trips to the ER. Got a referral to a neurologist who diagnosed "atypical facial pain" and started me on amitriptyline.

Today is day 30 of my journey in pain. These are current symptoms -

1. Constant pain in area of extraction.
2. Teeth #11, 13, 14, 15 are numb.
3. All of top teeth ache, but especially front teeth.
4. Pain from front teeth up to bridge of nose.
5. Pain on left cheekbone.
6. Some numbness along jawline.

Pain level goes from a 3 to a 7 based on this scale tipna.org/info/documents/ComparativePainScale (I'm new here and it won't let me post links yet. Put the www in front and the dot html at the end to find the site I am referencing.)


None of the opiate based pain relievers work on this. I tried Darvocet, Hydrocodone, Tylenol with codeine, Dilaudid, and Oxycodone.

The amitriptyline has reduced the pain from the constant 7 to 9 that I'd had before seeing the neurologist. I take it about 6 or 7 o'clock so that I am allowing myself plenty of time to sleep off the sedative effects of the medication. I started at 25mg per night and increased the dosage to 50mg. At 25mg I did not have too much trouble waking the next morning, but at 50mg it takes me almost an hour to get out of bed and another 2 hours to feel like I'm not in a fog. It also has had a slow down effect on my intestinal tract. The amitriptyline by itself is not keeping the pain at bay at this point in time, but I've only been taking it since August 25th. I understand that it takes weeks for it to build up in your system. When I wake up in the morning the pain is about a 3. But the longer I'm up and the more I have to talk, the pain level goes up.

Sure wish I could go back to Aug 6th and NOT have that tooth pulled.

Chalkdusty-I feel your pain. This thing has pretty much robbed me of any joy in life right now. It is really tough to experience joy when you have a near constant tooth ache all the time. I do have hope though and you should too. Let's hope the amitriptyline will start to kick in and bring you relief. If not, there are other med options out there that may be beneficial.

I see my neuro in a month then I'll probably be on amitript too. Right now, I need to come off my pain meds before I start though-due to drug interaction. I had spinal fusion in march and getting off these pain meds has'nt been easy but I need too. Kinda been a tough year for me. lol

Plz let us know how you are doing? I will do the same.

Peace
Shannon

Scoopy, you are absolutely correct in your comment about having no joy in life. I totally agree. I haven't had anything to smile about since this all started. My day is all about the pain. What level it's at and what do I take to try to lessen it. I hate what my life has become. It is so hard to go to work, but if I lose my job, not only do I lose my income I will lose my insurance. I'm an elementary school teacher and there is just no way to go to work when the pain levels high.

I backed off the dosage last night back to 25mg. At 50mg I'm to sedated to function and the effect on the GI tract is challenging. I hope it will still work for pain at that level.

Chalkdusty-how are you doing? You say the amitript is working for the pain? When did it star to kick in? Feel better.

Shannon

I have had some fairly similar symptoms since having my teeth bleached 10 weeks ago. It was the first time I had it done and was not expecting it to be so painful. I felt like my body went into shock and developed lots of weird symptoms. One of my lower front teeth throbbed so much it kept me awake for 5 nights. I then got a numb chin and lower lip and burning neck and jaw pain. This cleared up as the tooth stopped throbbing. However, the pains then changed to the top of my head. My upper teeth started to ache & throb and I got numb temples & a burning pain under my scalp with the odd electric shock pain up my face. My GP said it was a type of Regional Pain Syndrome but after doing some research I thought it might be ATN. I hadn't heard of AO. He prescribed Amitriptyline 10mg which I took twice but made me really drowsy but I am going to try them again.

My GP said it should subside within a couple of months. I have had the aching teeth and burning scalp pain for about 7 weeks now. The aching teeth is actually worse for me than the burning scalp but work has been really hard and have had time off and left early. Don't want to leave the house as cold air blowing on my head and teeth hurts them more. Hopefully mine and everyone else's symptoms will go away soon.

xxxxxxxxxx

Hey there, scoopy! I'm feeling a lot better. I've been on amitriptyline since August 25th - 25mg at bedtime (though I usually take it between 6 and 7 o'clock). Sure does help me to sleep! My neurologist told me to double that to 50mg per night after the first week. I tried over the holiday weekend, but was sleeping 12-13 hours per night and still not able to wake up in the morning without a one hour wrestle out from under the covers. I dropped it back to 25mg. I HAVE to get up in the morning and go to work! I'm an elementary level teacher and you just can't be semi-awake and do that job properly. It really took the better part of 2 weeks to feel an appreciable difference in the pain level. During the day I take a lorazepam 0.5mg at about 9am. That does not make me sleepy at all. I thought about trying to up the amitriptyline and take the second 25mg in the morning (and not take the lorazepam), but I was really afraid it would make me too sleepy to be an effective teacher. I'm waking up fine with just the 25mg at bedtime. However, the amitriptyline does cause some gastrointestinal issues as it slows the movement across the transverse colon. Not sure that I could handle the 50mg dosage....

Last week my pain started at a 3, went to 4 by noon, and was at a 5 or 6 by end of the work day. This week I've started at 1 and never gone past 3! I also started going to a chiropractor over the weekend. Oh, and I made my own homemade mini heating pad from a sock and some uncooked rice. Pop that puppy into the microwave for a minute or two and hold it over my teeth after I've eaten lunch. Yesterday I got home from work at 5:00 and realized that something did not feel right.....my pain level was a 1. :winky: As I said, the previous week it was much higher whenthe work day was through.

So I don't know exactly which to credit - the amitriptyline, the chiropractor, or just that I'm finally getting used to how 4 numb teeth and 5 that hurt all the time feel in my mouth. I am finally back among the living and not sitting around wishing that someone would euthanize me. :eek: I feel that I can still be an effective teacher and that is what is so very important to me. I was afraid that this nerve damage/pain would rob me of my identity. I'm just NOT gonna let it!!!

Now more importantly, how are you doing?

Besides all the other issues I am having, I had Zoom bleaching and yes it did play havoc on my teeth. It's obvious in my case the Zoom agrivated the nerves resulting in more pain. The first few days were really tough. Hopefully, in your case it will go away.Good luck.

Glad you are doing better Chalkdusty. It's great to hear success stories out there. I'v been better to say the least. My life is pretty much on hold filled with pain, anger and depression. Before I try the amitript, I need to be off my pain meds due to drug interaction.

I had back surg in march hence the pain meds. My back is doing really good though and very thankful. I should be totally off em in a few weeks. That's a whole nother issue of itself-coming off norco(vicodin).

Once off then I can try probably amitript.

Continued health for ya.

Scoopy, I'm sorry to hear that you are still in pain and feeling less than hopeful. I spent the first 3 or so weeks of my ordeal with pain level7, 8, 9. No sleep, no relief. So I do understand what you are saying. I sincerely hope that when you are able to taper off the vicodin that you are able to tolerate the amitriptyline and that it gives you relief and your life back. I just came from the chiropractor and was reflecting on the absolute night and day difference from where I was a month ago. When this started, I thought I'd never be able to return to work and that my career was over. I feel very blessed that that is not the case.

I found that narcotics did not help my pain at all. Yet every ER doctor I saw kept tossing narcotics at me. Since my pain did not present as typical TN, they didn't try any meds that would work on nerve pain. Shrug.

My pharmacist isn't thrilled with the amitriptyline and lorazepam together either. However, the neurologist said it was okay. I just don't take them at the same time. One at night and the other during the day.

Keep me posted on how you are doing.

Dear Scoopy,
I was unaware that there is a drug interraction between amiltriptyline and vicodin.
I take Nortriptyline, cousin of amil., with narcotics, (some pretty heavy ones, in fact) with zero interraction.
Didn't mean to pipe up in your conversation, but just wanted to let you know that there are possible alternatives.
Take care,
Lily

Hey Lily, how's it going? It's really not a major interaction but when it comes to treating atypical, some say the amil works better on it's own and not as good when combined. Who knows, but that's what I was reading in this med journal. By the way, how are you doing? Are you getting relief and if so what is helping you? Take care.

Hi Scoopy,

I just read your thread and it reminds me a little bit of me. I have been dealing with this pain for more than 2 years.
my pain started out in my tooth. thought I had a toothache and went to dentist. he could not find anything wrong, but said I could have cracked tooth syndrome. decided to have root canal and crown. Was back in his office after several weeks in severe pain and they told me everything looked great and it was just soreness and needed to give it time. I was in tears and told them this was not soreness. they gave me a couple of pain pills and sent me on my way. went back to dentist again after several more weeks and they said something. I was more insistent that something was wrong. they were not very nicety me and kept telling me that it was just sore. I kept telling them I new the difference between sore and pain. gin ally they said they could send me to an endodontist, but they didn't recommend it because it was expensive and they would not give me any pain pills. I realized at that moment that they thought I was a drug seeker. really hurt my feelings and I was very angry. told them I wasn't asking for pain meds and to just make me an a ppt with endodontist. endodontist was very nice and helpful.
I did end up with 4 root canals and 3 crowns . During the 4 th root canal, which was a tooth retreat I could not get any relief from nova cane he stopped procedure and said I think you have a nerve problem and wanted to send me to a pain specialist. I went home and decided after some research to see a neurologist.
neurologist immediately diagnosed me with TN. my pain ran across my upper teeth and sometimes up my nose into my eye area. she did an MRI and said it was atypical. I then started all the different anti seizure meds. the med would help some and then within few weeks pain would increase. Dose of med was increased and then another would be added. I went on like this, but side effects of meds made me a walking zombie and pain kept escalating.
my pain seemed rather constant, but I would have breaks although they were always very brief. the pain level also varied somewhat. I spoke with my neurologist about the possibility of having typical TN and asked if maybe a compression just didn't show up on my MRI. she said absolutely no way, I had atypical and would always have pain and be on meds. I choose to get another opinion and went to a neurosurgeon that specialized in TN. he took one look at me and said he did not know how I could even stand up they had me on so many anti seizure meds and doses were so high and I was still in co stant pain. I told him I wanted another MRI and I wanted and MVD. he said no MVD unless he found a compression.
he was several hours from me and I made an a ppt to have an MRI the next week and had MBD scheduled immediately following, that same day if he found anything. he found the compression and I was wisked away to surgery. woke up pain free. it was amazing, but I did have problems.
Woke up with intense pain in back of head. it was like TN had moved to back of my head. he kept telling me it was just from the surgery and it would calm down within couple of months. went back to his office several times within 5 weeks complaining of back of head and he kept assuring me pain would stop and then within 6 weeks my TNin teeth came back suddenly full force. Went back to him and he redid MRI and said everything appeared fine and suggested gamma knife. I declined. went to duke to see a neurosurgeon there. He listened to my story and said if it was his head, he would go to Pittsburgh to see Dr Janetta and have him open me back up and see what was going on. he said the only way I would know was to have a look. he didn't want to do it. he said I should go to the best.
A week later I was in Pittsburgh and saw Janetta and Dr Sekula. They were wonderful. they agreed to do a second MVD together thenext day. it had been 3 months since my first MVD at this point. second MVD was harder to recover from, but they added more padding and my TN was once again gone.
they said my pain in back of my head was probably from my occipital nerve. they said my original incision was not in the normal place and was a little high on my head and very close to my occipital nerve area. they thought maybe my nerve was caught up in scar tissue.
3 weeks later I had them do a third surgery to explore the occipital nerve. they found my occipital nerve was shredded and in shambles and they could do nothing to fix it. they think it was caught in retractor during my first MVD because of the incision placement. I went home devastated and still in pain. started looking into a stim implant for my occipital nerve. in the meantime, I started having a tooth pain. this time I really felt it was one particular tooth that had had 2 root canals and a crown because when I flossed it smelled bad besides the pain. went to endodontist in mid may and he took dray and said my crown did not fit properly and had caused an abcess. had another root canal, finally went to a new dentist and paid for a new crown. now my TN pain will not go away again. my neurosurgeon feels that the trigeminal nerve is just irritated and will calm down this time on it's own. I also just had a stim implant last weeks on my occipital nerve. it has reduced my pain by about 75%. I am still on pain meds, but am already reducing them. they also said that if my trigeminal nerve does not calm down I can have a lead placed on it to help.
Sorry, very long story, but wanted to say it is always best to get a second a third opinion. Don't just assume by one Dr that it is atypical or AO. sometimes it can be typical. my pain was so bad it felt constant, when in reality it was just firing so much and for so long it seemed constant. I did have breaks. also compressions do not always show up on MRI even when it is the right kind of MRI. it must be a special thin slice and still may not show up. my advice would be to go to the best Dr. I would go to Pittsburgh and be evaluated, even if it is hard to come up with the funds. at least you would know what you are really dealing with. if I had gone to Pittsburgh in the first place, I would not be where I am today.
hope this helps you in someway.
Easygoing

Wow! Easygoing, you have really been through a lot. I'm going to my neurologist this Friday for a one month check. I've got lots of questions for him. I really don't think I have TN. I think I've got neuropathic pain due to damage to the nerve from the tooth extraction. My pain is constant instead of the shocking, electric jolt that so many others have been describing. My pain feels more like when I was a kid we used to test to see if 9 volt batteries still had any juice by touching the terminals with our tongue. That's the constant zap I feel in my teeth. I am hoping that the nerve will settle down with time, but that is one of the questions that I want answered. I will seek out a second opinion if need be. Thanks for sharing your story.

Wow easygoing, what can I say. I feel for you and wish you find some kind of relief very soon. Plz keep us posted.

Chalkdusty-how you doing? I thought you were doing good. Does your pain come and go?
For me, it does.

Scoopy, I'm okay as long as I take my medication on schedule. If I am late with it, my teeth let me know it's past time. Yesterday was a day that the daytime med did not seem to be as effective.

hi to everybody,
I just wanted to let everybody know, I am doing okay. I am really excited about my stimulator and think it will be my answer to help me be able to function again. Do far it is doing a good job. I just need to heal.
thought my story may help someone else. I wanted people to realize, you don't alway have to have normal Tn symptoms in order to have a compression.

also wanted people to think about the possibility of a stimulator after several Dr opinions if there seems to be no other options and meds just aren't cutting it. my stimulator was approved by my health insurance, even though it is not FDA approved yet. it is always nice to know that you have options no matter what kind of facial pain you have. the stimulator seems to be a very nice option. it is not a cure, but I think it will allow me to have some of my life back and to be able to deal with my pain.

also, I do appreciate everyones sympathy, but I always try to tell myself I am lucky something is helping. I don't have something that will kill me and I am taking each day, one day at a time.
easygoing

easygoing,

I'm so pleased to hear that you are doing well with the stimulator and that your insurance helped out with the cost. I pray that you continue to have good results. Any day without pain is a good day!:)

I have AO
 

Hi,

I see the thread is from 2010. I have been identified with Atypical Odontalagia too. I am wondering did any of you got cured completely. How long it took and what you did. What medication helped. I am very devastated and down. I just went for simple dental cleaning then landed up extracting one tooth. Still gets phantom pain from the extracted site. is is dull and achy constant pain. I een didn't know this kind of disease exists before. Please let me know how you guys are doing that will at least motivate me

Hi Shannon,

I recently wore an old Invisalign retainer overnight and my tooth started having shooting pains over 4 weeks, which ended up as a dull constant ache, no more shooting pains. Did this ever go away? I’ve been to a specialist and homeopathic doctor whom treated someone else with the exact same situation (wore a new retainer and woke up with TN) mine is pain underneath one tooth in the front of my bottom arch #24.

I also tried CBD oil as it’s legal here in CA and SF which seemed to help.

Did this ever resolve itself? I wore an old Invisalign tray and woke up with phantom tooth pain, it’s been 8 weeks now and it went from random shooting to constant dull ache. Hoping it goes away and the nerve was just irritated.

Yes in the exact same boat. Jut got an RX for Amitriptiline and took my first pill last night. Dentists and specialists coming to a dead end. Although oddly I do have bad teeth which makes matters more complex.