Hello everyone! This is my first post, so please bear with me. I suppose I should give a quick summary of my story. I started having a toothache in August of 2011 and my dentist decided I needed a root canal. We did the root canal in January 2012 and then proceeded to do 8 more root canals over the next 7 months. With each root canal I had more pain and another tooth would start to hurt. In particular, tooth #19 always hurt, the tooth that started the whole ordeal. Following the first root canal of this tooth I went home and had the electric shock pain for 3 days. I will never forget that pain!! I thought my mouth was going to explode! I returned to the dentist and he redid the root canal and the shock pains stopped. I have to wonder if there was something wrong with the first root canal, lol. Anyway, the burning, crushing pain didn't stop. I returned to him and redid the root canal another time. Even with being numbed and the nerve being "dead", it hurt really bad when he worked on it. During the summer I had the tooth pulled, hoping that perhaps there was a crack in the root or something that couldn't be seen. Alas, the pain was still there and the tooth #20 became the prime suspect. So, I did the logical thing and had tooth #20 pulled. That turned out to be a horrible idea as the pain increased 10-fold. They thought I must have a dry socket, even though the socket had been filled with fake-bone powder to get ready for an implant. The pain continued and I went in a month later to have the fake bone cleaned out and the jaw bone scraped to clear any infection. A tiny chunk of dead bone was found and we hoped that was the culprit. At the same visit I had teeth #12 and #14 pulled since 2 root canals had not stopped the pain there. I went home in complete agony.
Skipping ahead, I ended up at an oral surgeon who decided the pain must be neurological. He had me start Gabapentin which after a week it helped tremendously for 1 week then started to lose effectiveness. He referred me to an oral/facial pain specialist at the nearest dental school. When I saw him he diagnosed me with Atypical Odontalgia and started me on Cymbalta. I did not see an improvement with the Cymbalta but when i went off it the pain level skyrocketed. So I started back on it. Eventually I was referred to a local neurologist. He diagnosed me with TN within 10 minutes of talking to me, which I thought was kinda hasty. He told me to stop taking the Cymbalta and started me on Tegretol. The next week I was in agony and called his office, they said he would call me but he never did. I got a referral to a new neurologist who I am seeing on the 22nd.
The thing I can't figure out is what the difference is between ATN and AO. I've read the article on Medscape and, well, I think I need a translator for it, but from what I read the symptoms are SO similar! Is there an easy way to tell which one you have?
Now I'm left with tooth sockets that burn like horrible and teeth that hurt but have nothing wrong with them. It is constant pain with some days being way worse than others.
Any thoughts are greatly appreciated and I'm so glad I found this support site!
Wow, you have really been through it! I don't know the difference, but those shocks you describe sure sound like TN. Go read my story on my page and you will see it is similar, but without all the tooth loss. I was diagnosed by my GP within a few minutes also. I started Tegretol and noticed a difference right away, but later had to increase 3 times to get the best effect. I am up to 1200mg and I still have small shocks/stabs and a tingly feeling sometimes.
Wow. When I'm off medicine it feels worse than before too. From what I've read, atypical is more dull boring pain I think. Sorry, when my teeth are shocking me that's the worst of pains. The socking is a tn symptom. Good luck with carbamazepine, it helps somewhat for me, but the body gets used to it and it useless during breakthrough.
Thanks for the responses! I'm so confused about the whole thing and being in so much pain does not help. My GP had me stop the tegretol and start back on the Cymbalta to see if things improve at all. I'm guessing the new neurologist will have me start the tegretol again. I really, really wish there was a clear-cut way of diagnosing and treating this stuff! I bought the Striking Back book and am working my way through it. Some days I just want to crawl under my bed and hide, or better yet go into a coma until someone figures out how to make the pain stop!
Is he an attorney? My root canal dentist is my uncle-in-law and my extracting dentist is my dad, so malpractice is not really an option for me.
Yes, they sure do!! I am making sure both of them know enough information to not let this happen to someone else!
Thanks for the reply, Shindig. I'm waiting for something to help enough eventually! I keep holding onto hope by a thread and telling myself it won't hurt this bad forever. I can't believe how hard it has been to get through the medical system! I finally allowed my good friend to start calling the doctors offices and getting stuff moving for me. She also got me a case manager with my insurance company and that has really helped get things moving.
I suppose I'll find out on the 22nd what the neurologist thinks is going on!
Pain management is the worst part for me! I used to take Norco to take the edge off the pain, but this last couple months it hasn't seemed to touch it. It was SO hard to get my doctor to prescribe something stronger, At one point I ended up at the ER cause my pain had gone out of control so bad.
I'm really, really hoping this new neurologist is better than my first one and that he helps! It sure sounds like you've been through the ringer, Shindig! Yeesh, I hope I don't need a spinal tap!
feafee im amanda I have a extremely similar case to you! I will try to make this simple because I know that all the things you read get confusing. Atypical Odontagia is a neuropathic pain. I started with pain in a tooth they did a root canal I didn't feel right after...ended up having to get the tooth pulled only for one close to that to start hurting another root canal still not ok they pulled that one the one above it started hurting...I wouldn't call it AO its a neuropathic pain they make AO seem not as serious as tn or atn What you have is ATN its the same thing as neuropathic pain...my sockets hurt too and pretty much all my other teeth at the end of everything some worse then others the more work they did on my teeth the worse I got...They tried me on anti-sez meds they had a adverse effect on me. I am currently on Nortriptyline a tricylic anti-depressent at 75 mg This is what you need to be on! theres another called Amitriptyline they don't know why these help with the pain but they do I went from being bedridden to able to workout and do things with my friends again im not guna say im pain free but im alot better then I was and hate to see any one suffer cause I know how bad it is friend me and inbox me if you have any question I'd be happy to answer you!
Alot of us started out at the dentist. I know I did, I had just had a crown replaced when my pain started. Went back to my dentist twice, luckily no teeth pulled, he prescribed an antibiotic for poss. infection and gave me Percocet for pain, which if I took enough of made me go to sleep and then the pain ended, but it was back when I awoke. One more visit to the dentist, who thougt I should see an endodontist for a suspious childhood root canal. No problem was found there. Went to my reg MD who thought I needed an antidepressant. When I brought up TN, he said no he didn't think so. I got a referral to a neurologist and she immed. knew it was type 1 TN, put me on Gabapentin in increasing doses, which has helped alot. Had an MVD a year later. Stopped the shocks, but not the pain in my molars, cheekbone or eye socket, which were there less than 50% of the time. Had a remission that first summer (or maybe it was all the Dilaudid), But my initial pain came back, so I'm back to inceasing my Gabapentin, I've tried some others, but Gabapentin has worked best, plus a small dose of Klonopin for facial spasms. Now I'm being worked up for geniculate neuralgia (ice pick to the ear pain etc.) I've applied for SSD, now waiting for answers all around.
Wow, I can't imagine having so many teeth pulled, poor thing.
Thank you, Amanda! The specialist did mention neuropathic pain as well as AO. I will ask the new neurologist if he can switch form the Cymbalta to Nortriptyline. I had a problem taking Nortriptyline when I was a teenager, so they hesitated to put me on it. At this point I would rather have some stomach pain than what is going on in my mouth!
Thank you so much for your response. It means a lot to hear that someone has something so similar going on! Are you able to go without pain medications while on the Nortriptyline?
well if you can't take the nortriptyline there are a few other meds like it they are tricylic anti-depressents. cymbalta is just a regular anti-depressent. I had some nasauesness when i first starting taking it but your right its nothing compared to the pain in my head/face/mouth yes i am able to go without pain medication : ) I also workout and try to eat healthy which helps with the depression
That is so great to hear!!! I can't imagine being able to workout again! Right now I'm doing good to get up and get to the bathroom. I will for sure ask the neurologist to try a tricyclic anti-depressant next week!
All my x-rays have looked great, so I guess that means there weren't overfills. I have no idea what he used to clean the canals. I'm hoping the bone infection is gone. Since both the top and bottom left jaw hurt, I'm guessing it's not due to infection that was only on the bottom. My best guess is that the root canal on tooth #19 must have triggered the TN somehow. How I wish I could go back and choose to leave my teeth alone!
Moving forward, I'm now anxious to switch anti-depressants and hope with everything that they make a difference!
ai have been recently identified with ATN, constant dull tooth pain. I am wondering do you have pain now. Since it is been 3/4 yrs now. Just wondering if you got rid of the pain completely.
I have constant tooth pain as well
Hello! I recently had a nerve stimulator put into my face that sends signals to my brain before the pain signals reach it. This has given me some relief from the constant pain and I am so thankful for that!
My surgeon had me get a nerve block as a test as to whether the stimulator would work or not. Since it worked, even for a short time, he said the stimulator was likely to work.
I still have a lot of pain, especially in the evening when I get breakthrough pain, but it certainly is better than before. I am very happy to have something go right!
I know this is an older thread-and hopefully some people are still on it.How did things work out?Did anyone try alternative treatments-chiro,massage,acupuncture?
You all sound so much like me.I hope that you are all better
I’m still struggling to get the best out of the stimulator. They put a lead across my bottom jaw a couple months ago. They changed my programs after that surgery and I just don’t feel as good as before. I meet with the Medtronic reps every so often to try new programs. My neurosurgeon says if this doesn’t work he will put in a pain pump. I guess they can use less medicine with better results since the medicine will go straight to where it is needed instead of circulating through my whole body.
I tried chiropractoric for a while. My back felt better, but not my mouth. He had sounded so hopeful that I spent a lot of money on that.
I saw an acupuncturist a couple times. I didn’t stay with her and I often wonder if that might have helped.
I’ve finally started seeing some mental health professionals. The stress all of this creates is too much sometimes. It’s very hard to think that I will never be completely pain free. Forget accepting it!
In the end they have diagnosed me with Trigeminal Neuralgia along with Neuropathic pain. My pain doctors say it is one of the most difficult things to treat. I take long acting morphine with dilaudid for breakthrough pain. Along with Nortryptaline and tegretol to also help with pain. I’m not sure the antidepressant is helping with the pain, but I can use something to help with depression!
I hope you find something that helps you!