Atypical Odontalgia

Hi sassy1

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Patient

Hi,

Is anyone still on this thread...?

I’m here

Sorry.. Sassy1. I am on this thread..you are the first I am responding to..

I just haven't had any good news to give you ..until recently in the last six weeks.

I have to tell you I have been though so much in the last two years.  So many drugs prescribed (over 4 made me crazy) , medical marijuana  and root canal not needed and didn't work !! Numerous doctors (about 12) and many hospitals .. I have a very, very long story .  I really thought I was at the end of my rope, if it wasn't for my husband and daughter. 

But I will tell you, I finally have some sunshine in my life .. finally I have relief from from a botox injection in the roof of my mouth and around the pained area ( it wasn't one big shot .. several little ones) + I am also taking 10 mg of nortriptyline and topical lidocaine/ora base with a apparatus(doc made like a night guard , but it covers the roof of my mouth)  that holds the meds in place when needed for extra pain. 

Doctors are starting to give patients with chronic migraines the same botox treatment. I know a friend that is also getting major relief from this for his migraines.  This is very expensive for us with nerve damage in our mouth, because I don't think health insurance understands this as of yet. My friend only pays the co pay of $15 for the migraine shot. I'm paying $900 for the shot in the roof of my mouth.  I am fighting it with my insurance company ..of course.  My pain doctor says I will have to have it every 3 months. But ... it is helping and I can feel normal again for the first time in over two years. 

Please hang in there! We are very supportive of you and understand what you are going though. I hope this info helps.  It will get better... I believe and pray that every day.  Let me know if there is any other info I can give you to help. 

Xx

Hi. I'm scared.

Been having dental issues for last couple of months - pain started in upper molar that I had root canal in last year. Re-root canal was attempted but the tooth never settled - I would be pain free for a couple of days and then it would flare up again. 

After the second attempt, the pain changed a bit and was more in the tooth and also along the teeth next to it and the bottom teeth. A throbbing. 

So, extraction was decided upon. I went in last Friday - 6 days ago - (in no pain) and as soon as the anaesthetic wore off, the same pain was back. I was immediately concerned as I have had extractions before and it didn't feel normal. 

The pain just increased over the weekend. I went on Monday and they confirmed it wasn't a dry socket. I am on Metronidazole again - have had so many courses of antibiotics over the last 2 months but none seem to have done anything. 

So, the pain is relentless. Wakes me up at night, Ibuprofen helps to calm it a little but does not eradicate it entirely, nor does co-codamol. 

Does this sound like AO? Reading through this thread, I can relate to some of the experiences. 

What do I do now?

I have 3 small children and I just can't cope with this and the thought that this will be my life now. 

When my tooth was pulled the pain came back too. Typically I don’t have pain at night, that stopped after the extraction. But can have god awful pain during the day. Make sure they are doing CT scans to rule out anything dental. If your dentist says it’s not dental, go to your primary care doctor. Mine ordered a MRI, which ruled out any compression on the trigeminal nerve. I think that made it more likely to be AO.  She started me in Gabapentin and Noretriptyline and the meds together significantly lowered the pain. A orofacial pain specialist told me that if these meds Help, it’s diagnostic of nerve pain and means the issue is medical not dental. Typically meds like ibuprofen or even opioids like Vicodin don’t help with this, and they never really helped me. I know how awful this pain is - at one point I didn’t see how I could go on much longer with it, it was unbearable.  Please don’t give up or wait - if your dentist has ruled out dental cause, go to your medical doctor ASAP. If it is AO you can find meds that Help significantly. The ones im on tend to be one of the most commonly prescribed combos - if your doc isn’t sure what to do, ask for them. Google AO and gabapentin and nortriptyline and take the info you find to your apt. Also seek out a orofacial pain specialist and get their input. It probably will take longer to find one/get seen and you’re in too much pain to wait, that’s why I say start with your pcp. Also there is a Facebook group for people with AO that I have found very helpful in terms of what has worked for other people.  Don’t give up - keep fighting, if it’s AO you can find relief and if it’s not they can figure that out and take care if that too.  I hope you find relief soon. ((Hugs)). 

I keep on watching my emails for new posts but nothing happens.

I'm no further

Must've hit something i shouldn't have there...so begin again..

I keep looking on my emails for new posts but there never is. I presume we're just getting on with it..some waiting on appointments too like myself.

I'm on waiting list for another go at Radiofrequency but dear knows how long that will take.

Only respite i get is sleeping otherwise only for Oragel and chewing gum which i loathe I'd be distracted.

Hi there

I can't believe how similar your story sounds to mine. I started getting a throbbing in my tooth but couldn't decide what tooth as it seemed to jump between 2 teeth. I went back and forth to the dentist I had 2 root canels loads of anti biotics the same metronidizole tablets and it would not settle my dentist told me to get a second opinion as he had no idea what to do and basically told me he couldn't treat me for something that wasnt there. I then went private. One day i drove between the dentist the gp and A and E crying and begging for help. I had a tooth pulled out as I was at my wits end and was told at A and E that it was TN but when I started researching amd realised I didn't have the electric shocks. I have now diagnosed myself with AO amd the gp has agreed i am now on amitriptyline which is keeping it at bay. Thankfully. The pins and needles have gone but when i forget my tablets the throbbing is still there. I have had an MRI which showed nothing I have been referred to a specialist who couldn't see anything and just agreed that it is AO i am now waiting to see another specialist. I also have three children and this has honestly been a complete nightmare hence why I searched forums as no one else could relate to what I was going through. I'm so sorry to hear ur suffering look up amitriptyline its an anti depressant but when used at a lower dose it stops nerve pain mezzagw going to ur brain. It is working for me. I do feel it most days for a short time but very mild. Let me know how you get on x

Hi. Thanks for your response. I just don't know what is going on. 

Yesterday morning the pain completely stopped and I could then just feel normal pain from

the extraction. 

I had a whole day without pain. Last night I slept much better but I woke a few times and could feel the pain creeping back. 

This morning it is painful again. Have just taken ibuprofen so will see if it responds to that....

Does this sound like AO - the pain completely disappearing and then returning...?

Hi. I really dnt know

Hi. I really for know to be honest it seems to be different for everyone. Mine is a really strong throbbing which jumps between 2 teeth. It doesn't go it's always there but controlled woth amitriptyline. Wen it first started it was pain and throbbing and pins and needles all over my cheek. I'm a bit worried as I keep getting a mild toothache on the opposite side now. I dnt no if this is a normal toothache and terrified to have any treatment I dnt know if u even get this on both sides. I could just have a normal toothache now. But it terrifies me to touch anything anymore. My dentist who was always lovely doesn't seem to understand this at all and that worries me.

Been on Ampitripyline at the recommended dose just before it becomes an antidepressant didnt do anything for unfortunately.

Glad to hear your getting some relief from taking it.

I've had Gabapenten and Pregablin both didnt help at all.

Waiting for another try at Radiofrequency as first time wrong nerve was burned off. It's an horrendous treatment a probe in your cheek and nerve having to be prodded to tell if thats the pain.

It's taken me a year or two to pluck up the courage to repeat it but nothing else is going to rid me of it.

Radiofrequency sounds awful. During the last week I've started to have a slight toothache on the opposite side of my mouth. I'm terrified to go to the dentist I'm just praying that it is a normal toothache and can be treated. Can you get AO on both sides of your mouth? It's just terrifying now letting the dentist touch anything teeth I'm so paranoid. I just can't imagine living with this for life!

Tamiko

Radiofrequency was bad enough having it on lower spine for sciatica but did the trick years on and its kept at bay ever since.

But on face oh entirely different story its honestly horrific when he said he'd redo it for me i couldn't accept and its taken me all these years to way it up again but i will never get rid of AO if i dont get it.

So it's the better of two evils i guess.

Nothing else out there for me.

Thank you! I've read that cayenne pepper supplements work as well. I've been taking them and they are helping. I'm getting weaned off of pregabalin and put on amitriptyline. The combination of cayenne and amitriptyline is supposed to be helpful I guess. Time will tell

I am not one to comment on threads but your story hit too close to home. 

In Nov of last year I had a routine dental filling done, once local anesthetic wore off I was in the most excruciating pain ever. Pain continued for 7 weeks with me constantly going back to the dentist complaining of unrelenting pain and X-rays showing no reason for pain. I kept being told to “give it time”. 

I went to a different dentist, sobbing and frustrated. He performed RCT on one molar. Pain increased to the point I woke my husband up one night and told him to hold me so I couldn’t cause any harm. I’ve never been in such intense, unrelenting pain. Week after that dentist performed another RCT on a different tooth even though all X-rays showed no signs of decay or issues. He kept saying, this is baffling because you have impeccable oral hygiene and your teeth are perfect. 

Second RCT didn’t take away the pain. The next 4 months were awful as I went back and forth from dentist to doctor multiple times. I have 3 young children. When this started my baby was 3 months old. I then fell into deep depression and anxiety  from the trauma and also just having a baby and dealing with this and from having no hope and feeling angry that in an instant my life completely changed. I just couldn’t understand how I was fine and now this? And no one could tell me what was wrong. I refused to go on medication and instead took a more functional medicine approach of eating a clean diet, exercise, mediation, and loads of prayers. I finally resolved that I would just have to learn to live with it. 

My dentist called me one morning and said he was doing a training on Botox injections from tmj pain and begged me to come be a “model”. I went and they did Botox injections in my jaw, below and around my ears and in my temples. I woke up the next morning PAIN FREE!!! I couldn’t help but sob. I finally had my life back. I have still dealt with some anger issues that I was robbed of my babies first year of life and he is likely my last but I try and focus on the gratitude of being pain free. It has been 4 1/2 months since the Botox injections and the pain is starting to return but nowhere near where it was. If it gets to the point it was before I will most definitely be doing injections again. 

Good luck to you. It is absolutely the worst thing to be in pain and have no one believe you. I would highly recommend finding someone who will do Botox for pain relief. Prayers to you. 

Is the pain you have or had praise God in your teeth or face? Mine is in teeth moves into next tooth when i had the offending one removed which was healthy. Had 2 extractions carried out i told the dentist it was toothache but she said after 2 removed there were no more being taken out as they were healthy teeth and xrays showed nothing wrong.

I know its very frustrating i went from doctor to dentist and visa versa one said its medical other said no it's dental.

I self diagnosed myself by reading an article that couldve been written about my pain.

Like you ive had to resolve to live with it.

My daughter's waiting on Botox for headaches waiting list is rather long.

I'm on list again for radiofrequency though not relishing it.

Please say if your pain when it was there was is your teeth or not?

Thank you.

My pain was in my teeth. I had multiple X-rays done on a molar and no sign of decay or anything. Dentist did a percussion test and it hurt so bad. He said it was so odd my teeth looked great but obviously my nerve/root was on the fritz. He said the nerve would not be able to calm down so he extracted it and did a full root canal. The next week I went back crying in pain, he tested the next tooth that looked perfect on X-rays and again it hurt intensely bad. He said, did we get the wrong tooth? This makes no sense! He performed another RCT thinking perhaps we had gotten the wrong tooth. Nope. Still in pain after. I went back a week later and the pain was in the next tooth. At this point he said, no more. I can’t destroy any more of your teeth because they are perfect. He told me to go to my regular doctor. I went there-$6,000 worth of blood work. Showed deficiencies in magnesium, vitamin d, and coq10. I now drink a powder magnesium every night before bed and that did help the pain quite a bit. She said magnesium will help the nerve that runs along the bottom of the jaw. She said absolutely do not have any more root canals or extractions. Even though the root canals were done and showed successful in X-rays- I STILL had pain where the teeth are but nerve is gone. It makes no sense. 

Dentist is a friend so he called and said, maybe it’s TMJ and you’re grinding your teeth at night. He made a nightguard and I wore that. Didn’t change the level of pain. 

Going back to the very beginning when I had my routine filling done - when the dentist put the injection to numb my bottom quadrant it hurt very bad. I think he must have hit the trigeminal nerve and it caused trauma. 

I actually am scheduled to go see a chiropractor because many of my friends have felt he really might help balance my systems out. The Botox did help but I don’t want to continue doing it for life. 

The magnesium powder I take does seem to make a big difference. Look up magnesium deficiency and see if that could help. Good luck to you. I’m so sorry. 

There is nothing worse than pain that no one can figure out why it’s there. I even asked my doctor for a psyche evaluation because I started to worry I was going crazy. She told me, you’re not crazy, you’re in pain. We need to get you out of pain. 

Thanks for sharing your story - sounds awful and it is so hard to

deal with with small children as well! 

I feel like I have a long road ahead of me but it is good to know that you have found some respite!

It's 2 weeks today since the tooth was extracted and I actually haven't taken painkillers today - for the first time! I have felt discomfort but nothing like it was last week. I have asked to be referred to MaxFac as I'm sure the pain will return - it seems to switch on and off without any rhyme nor reason... I do sleep ok at night though and then normally the pain creeps back in as soon as I wake up. 

Are you in the UK - did you get referred? 

No I’m actually in the USA

Ok. Just wondering what the best route is to get help - slightly different here. 

Hi ive just joined this page and nice to see there is other people out there with same problem and look to have some advice from you all im 30 but for 4 years ive suffered this pain all started from getting treatment at dentist i had a tooth removed then had a constant pain in my gum area of site got refered to maxiofacial they cleaned this sight but with no affect pain still never went away i have a mri scan and results came back clear i have had several back teeth taken out and now my pain moves around on both sides the pain i mostly feel now is in my gums on bottom left and can affect my ear aswell its a constant burning pain in the area. I look forward to a reply and hope to have a chat with anyone who is also going through this pain im so deeply deppressed im on nortriptyline 10mg at night and 50mg dicloflex