Please help, My pain must be dental right? Or is it really TN2/ATN

Symptoms & Treatments
1

Long story short, i had three dental fillings done by an incompenent dentist.

The fillings were extremely small. All three teeth started aching badly after. After 6 months i had all three teeth root canaled, desperate Two of them were necrotic/dead (root canal was needed!) and the third one was on its way out. The third one felt different then others - would sleep at night, dragging/pulling pain, pain escalated after root canal but has been settling down in the last year. This is 100% neuropatic. It is actually doing the best at this moment out of all three teeth.

The root canals were all needed. Esentially the dentist killed the nerves. I dont know, but he caused damage causing abrupt death of the nerves.

Unfortunately the other two teeth are still hurting. One is not sensitive to chewing so I will leave that out of this discussion- it might be neuropatic - the pain is different of nature, playing/touching with my tongue sets it off.

The final tooth is actually very painful to chewing. The annoying part is i cannot find any pattern pain. It went quite good for a couple of months.Barely any pain. Pain now is back. Goes away for days. Pain comes back. During the day, on off on off. It is aching. It was 3-4/10 in the last year but ramping up 5-6/10. Action is needed… I have had 2 CBCT scans from the last year. The root canal was done professionally. My last endo does not want to retreat. He is hesitate to treat at all, but since chewing sometimes hurts he suggests apioectomy.

Im done with the tooth and want to extract it.

  • it is pain to chewing chewy foods. There are no signs of infection (none of my necrotic teeth ever showed any x ray changes!)
  • There is pressure inside the tooth itself. The pain is boring.
  • No burning, gum pain, no pulling.
  • pain is not strong enough to wake me up at night. Pain is more present during the day but does not follow the “15 min pain free” cycle in the morning.
  • Some days/weeks in the last year (2 times 2 months) the pain was basicially zero)
  • its been a year now. I have been in a pain flare up since 16th of december again. Some days it hurts badly, some days it does not hurt at all.
  • a mix of neuropatic/dental would be an option

Any advice here? Im thinking about extraction. Im doing bad mentally. The pain is getting worse. Its been 18 months after the incident and 12 months after the root canal I tried getting antibiotics to test but my endo/dentist/gp are not willing to prescribe (i live in europe). I have amitrypiline at home but to scared to try - i suffer from tinnitus and Ami can worsen this condition permanently.

P.s. we have to keep in mind - the people on this forum are biased as there are only people with TN. The people with pain reduction after extraction are not here because they dont have TN…

I went to the neuro - he did not know the phenomenon of dental neuropatic pain. After much discussion he prescribed capcaisin on my request, however his is external capcaisin and clearly says do not internally on lips, eyes etc.

Please, anyone with insights? People with ATM / atypical/ atypical odontalgia, is this pain cycle familiair to you?

2

I thought by now you’d have had several response by now. Maybe I’m looking in the wrong spot! LOL. You have my sympathies for your situation. You’re in a difficult situation for sure. How you arrived in this circumstance is not dissimilar to mine. 12 years ago I had a filling done that was never 100%. A bit of a dull ache, almost continually. I went to another dentist and had it replaced. No change. Then a barrage of specialists and tests, scans etc etc. Thought of root canal… after 12 months or so I had the tooth extracted. No change. An expensive professor said as much before hand. But you get desperate. To try to keep it brief, a sure symptom of ATN ( atypical trigeminal neuralgia ) is the sufferer having much ( expensive ) dental work done!! My advice STOP. It may be hard to believe but it will make NO difference.

Please look at others’ experience on this site. Your trigeminal nerve is damaged. you will not be able to fix it. This includes trying surgery to “relieve pressure” on the nerve junction. It will not help long term what so ever. My apologies if this sounds terribly negative, but these comments are based on my and others experience. Read up what worked for them… nothing will remove this pain totally. Some people react well to various nerve drugs ( you mention amitriptyline … it did nothing for me. I’ve tried the lot. Name a nerve agent I’ve been on it. I’ve got by on opioids. Again an imperfect solution, and a very risky one in terms of addiction and drug tolerance, not to mention side effects. And opioids are subtly, cleverly addictive! And it can be difficult to get a doctor to prescribe the stuff! I’ve been on opioids for over 8 years now, and have really only just learn to manage it.

Here’s my regime: Lyrica 75mg x 3 per day, Targin 20/10 2 to 3 times per day. I’m not sure just how much the Lyrica helps. I’ve tried it alone and it did nothing. Targin: this is 20 mg oxycodone plus 10 mg naloxone in a slow release tablet. Good results! .Very little constipation, a major side affect of opioids. And it is “safer” in terms of addiction. Of course it is still addictive, but as it is slow release, and perhaps the naloxone moderates the effect a little, there is no or very little of the high, or euphoria which is the addictive element of opioids. Enough rambling.

Please read the Wikipedia article on ATN. You may shocked see yourself described there! And look up Targin on Wikipedia to get a full explanation of this drug. I am in Australia, which might make access to opioids a bit easier than overseas, but I still have hoops to jump through for each prescription. Read up on this condition. Most likely this is your life now, sorry. But you are not alone. Avoid the many apparent cures that are out there. Read up on this website of others experience. Again, read the Wikipedia article on ATN!! Note that it states sufferers ( ie YOU) can, and usually do, suffer from deep depression, and are at significant risk of suicide. Suicide too can start to seduce you. Watch out. look after your mental health and that will not be easy. This group has many sincere people who are there for you. Again, I apologise for the bad news. Very best wishes to you!

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Thank you very much. I did my research - im very well aware of the stories, worsenings and endless treatments done. Im certainly not the only one.

My main problem is the fact that i actually needed the root canals - the pain in significantly less as before - as the teeth were necrotic. However, it has been 12 months and the pain is getting worse. It hurts to chew too. Never were they any radiographic indications showing infection. I guess too early in the process.

Some people claim chewing hurts with TN.

This chewing/not being able to take pressure is specifically on a RC’ed tooth - that points towards somethint at the apex of the tooth.

I guess it is wishful thinking but we have to keep in mind - many people with pain after RC’s extract their teeth and go on with their lives - the one with persistent pain end up with diagnosis and on this forum.

Im am deeply depressed, not suicidal but the fear of worsening without being able to control it nor with a action plan is taking its toll on me.

@Craig1 let me give a tip back to you as i didnt find it yet on this website. There is promising pain medication on the rise : VX-548 for neuropathic pain, closing final trials in March '24. Appperently a non addictive, less side effect pharmaceutical which directly aims the pain center inside the brain (sodium nav 1.8). This will be a block buster in pain management if the trial is succesfull

4

I was diagnosed with trigeminal neuralgia (TN) approximately 15 years ago. I initially thought the pain I was experiencing was from a tooth and went to my dentist several time for him to check the tooth. Each time he examined me and told me nothing was wrong with the tooth. I finally told him it hurt even if I very lightly touched my skin above my lip. Then a light bulb went off for my dentist, and he told me I probably have TN. My dentist referred me to a neurologist. My neurologist confirmed the diagnosis. I tried numerous therapies and medications throughout the years.
Approximately 6 years ago, I decided to have microvascular decompression (MVD) surgery Nothing was working anymore, and I did not want to go on disability, but performing my stressful healthcare job was getting very difficult. I did a lot of research to find a center of excellence for cranial surgery. I chose Dr. Raymond Sekula, UPMC, Pittsburgh, PA. I traveled to PA from IL.
My MVD surgery was very successful. Approximately 10 weeks after surgery, I was pain and medication free, and I still am today. My only regret was that I did not pursue surgery years earlier. The surgery gave me back my life. I am forever grateful to Dr. Sekula and his team.
I wish you well and hope you find the therapies, medications or procedure to assist you with TN.
Please Note: Dr. Raymond Sekula is now in New York at Columbia, Neurological Institute of New York.

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Great, you’re on the right track. Good to hear! Thank you for the details of that drug. I will most certainly follow it up here. Cheers, Craig.

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Hi! I was diagnosed with ATN after a filling, had 3 root canals and then 2 teeth removed that looked healthy. The pain persisted. I tried every TN medication and saw a dozen doctors around the country. Still in pain. Mostly in my missing teeth and then spreading to my eye, ear and head mostly on one side. I had at least 4 MRIs but noting. Tried Chriopractor, TMJ therapy and massage. Still no change. Then I found a doctor who listened and ordered a ct with out contrast of my neck and found I had a rare disease called Eagle Syndrome. A rogue bone in my neck that with certain movements pressed into my trigeminal nerve. It started that day in the dentist office. I had the bone removed and my nerve healed. To learn more about Eagles you can join the Eagles group. My ATN was clearly caused by this rogue bone. Wishing you relief from your pain.

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Your Trigeminal Nerve was “Damaged” in same way. Start taking Gabapentin, that should help. After a Root canal and experiencing pain my dentist consulted his wife and she knew right off the bat. My MS is at issue and the TN was an issue that the RC brought to the surface. Gaba is my life saver.

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First had TN decades ago. Been completely drug free and pain free through a combination of upper cervical and an olive leaf based supplement regimen designed to kill the virus that gets in the nerves and causes MS & TN. Had been off the regimen for years, and was still 100% pain free. A few months ago I had a root canal. TN came back about 2 weeks after. Went back on the regimen. Pain’s completely gone and I’m back off the regimen. Works very reliably for me.

If you’re interested in the regimen, lookup my other posts with more details on that.

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You said you have gotten by on opioids. I am just the opposite; opioids don’t even touch the pain in my face. I am glad the opioid cocktail helps you. If it worked for me life would be so much easier.

10

I wish that were the limit of the pain in my face. When it happens I can’t swallow because even that side of my tongue and that side of my hard palate is excruciating. I just let the drool pour out of my mouth. It is awful. If I can manage to get a Flexeril and 600 to 900 mg of Trileptal in there and force through the swallowing it eventually shuts off like a light switch.

11

In my most recent episodes of this pain, a new pain developed, going straight down into the upper canine tooth on the pain side. That never hurt before, but it hurts now. Just spasms and spasms of horrible pain going right down into that tooth. I can understand how people who have their pain start in the teeth would want to have that tooth or those teeth removed if the thinking is that bad teeth are the cause of the pain. Insights? I really don’t have any, except to repeat what works for me, high doses of Trileptal plus one tablet of Flexeril. That makes it stop, but not until my digestive system gets it into my bloodstream and into my brain. This has taken as long as 1 hour 15 minutes to sit motionless with drool flowing down the front of my shirt because it hurts too much to swallow. I have to push the pills in with my finger and then try to get some water in by using a straw on the normal side. Even then the swallow has to be forced with agony. That’s the odontalgia I have. I’ve had TN for over a decade, and the tooth pain did not start until last month.

12

I’ve survived TN for about 15 years now after a trip to an incompetent dentist. Oxcarbazepine works sometimes for me., but as the pain comes around, I find myself adding a third pill during the day. The day I tried to go to 1 pill, the Pain came. Gabapentin nor Lyrica didn’t work much if at all. I found a Homeopathic Analgesic Topical Cream called Neuragen . About 10 years ago on the shelf at Walgrens. When they , or any other pharmacy around I found it online and began to order it, 2 or 3 tubes at a time. I didn’t want to run out of it. It worked that good for me. Now I have found that the cream is no longer been approved, anywhere for distribution I am down to my last tube, I researched that the product was manufactured in Halifax, Canada and even made a call to the number provided and was told that, unfortunately, they were no longer in business. Just wanted to share. I hope it provokes and someone of us has a suggestion for this TN PAIN that we endure.

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hello
sorry to hear your having dental pain. I too ended up with TN 2 Neuropathic facial pain caused by a dentist. It took 9 months and lots of appt. to specialist to get a neurologist, diagnose me.
i had radio frequency surgery with no success.
was sent to pain management for 5 years. told no cure and was disabled with 1 year. I had burning pain and electrical shocks that would put me on my knees along with throbbing tooth pain, numbness on right side of my face. I know what your going through, i have been put on every medication pain meds and therapy you could think of. I only found Ice to be my go to when pain got high. I would manage living by being him by 1:00 pm because that is when it would start to fire. It would fire all through the night until morning. from 3:00 am until 1:00 pm i was pain free. suffered for 7 years with TN2 and now in remission. Pain Dr has no idea how i’m in remission… but I had a vision when i was at my lowest. I head Be Still and trust in the Lord. I did and I still had pain every day, but one day it was less and after a few months it was gone. There is hope, so never give up. i’m off all medication for nerve pain and praying everyday it stays in remission. This is a unrelenting tragic trauma that dentist need to learn how to avoid My D3 and D 4 nerve was damaged by the nerve blocks they give you to fill your teeth.
I hope and pray the find a cure for TN1 and TN2 suffers. praying you find treatment that works for you.

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Please read my post above about Eagle Syndrome causing TN issues. Swallowing issues and excess saliva are also symptoms of Eagles. Often swelling feelings like there is an obstruction on one side of the throat. For me steroids and flexerol helped my pain because it would reduce the swelling around my trigeminal nerve and relax the muscles of the neck lowering my pain. My trigeminal nerve has healed and I am no longer in constant pain.

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I thank you all for replying. I dont see very little overlap with others unfortunately.

My root canal DID help and it was needed. The pain before was extremely bad. The tooth was actually bad/dead.

However the pain did not fully go away. It comes and goes now. I had two periods of 3 months with barely pain at all out of the 1+ year i have been dealing with it.

On top of that, the tooth is sensitive to very chewy stuff (the endodontologist tested the chewing).

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One question I would ask is if the pain is constant or like periodic shocks going through your head. TN can be constant, but once under “control” (ha) with meds, you might get the shocks. If it’s constant pain with one particular tooth, may be dental. I am NOT a doctor or anything close, just someone who has suffered from all kinds of pain. I believe my TN was originated because of a dental procedure where my mouth was held open for 4 hours. Onset of symptoms began immediately after. I went to multiple dentists, doctors, etc., and they all had a different/wrong answer. Finally, I did some research and saw about TN: Bingo. Totally my symptoms and sometimes caused by dental procedures. My local neurologist was useless.

If you haven’t, get an MRI. From a good resource. Local MRI’s didn’t see mine. I had one done at Johns Hopkins and they immediately saw (and fixed) the problem. I opted for MVD even though it is the most invasive because it is the most successful long-term. Truth, it doesn’t work for everyone.

If your situation truly is dental, I hope you find a good dentist who will help you.

Btw, even though I believe my condition was caused by a dental procedure, the teeth were not the source of pain. A blood vessel was pressing on a nerve, The pain came when anything (chewing, brushing my teeth, smiling) caused the trigeminal nerve to be “touched” or pressed on the blood vessel. At one point, after a knee surgery, the pain lasted 31 days straight until Lyrica kicked in. I couldn’t even sip through a straw! (This was before the MVD.)

Everyone’s situation is different, even if similar, so don’t give up. Find the answer for YOU! Be assertive until you find the right doctor.