undiagnosed---Do you think this could be a form of TN?

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1

Hello all---

Up until 4 days ago I would have said 110% that my pain was dentally related, but I got to the point that I had to look back over this last year and say that I have to start thinking outside the box.

My story:

-Developed persistent left side earache in Fall 2014 after a virus. Saw multiple doctors, ENTs, none could find a cause. One suggested dental issues as a possible cause and to rule that out with an exam.
-Saw a local dentist in December 2014. She cold tested all my L side teeth, took xrays, did physical exam of jaw joints, did not find anything abnormal. Shortly (hours) after that exam, I developed L side dental/face pain in two areas. Area #1 was upper L around the extraction site where I used to have my wisdom tooth and around #15, and site #2 was in the lower left between #19/#20. (#19 was a 19 year old RCT tooth which was RCTed in my teens after pain from a small filling. It was poorly done and had a dental file inside of it, but had never given me any issues before.)
-Jan 2015 to April 2015: Saw many, many dentists to try to establish cause of the upper and lower L side pain, jaw pain, and ear pain (which was still present.) Saw endodontist,4 general dentists, TMJ specialist. A definitive cause was not found but many assumed the two areas to be separate issues. Was advised to treat the upper pain as TMJ, and to get tooth #19 extracted in case the poorly done RCT was contributing to the pain, though nothing was found on xray. Was given an upper rigid acrylic splint to wear at night, which was very uncomfortable. Had a CBCT scan which showed nothing abnormal in my teeth or sinuses.
-June 2015: Had #19 extracted. Had intense pain in extraction site/#20 for almost a month afterwards, then it calmed down. Earache slowly resolved. Still had L side facial/jaw/upper and lower L pain but it was mild. Since I still had symptoms after the extraction, most likely #19 was not the cause of the issue, but I was aware of that risk. Still continued to try to wear the upper splint at night, but it was hard to keep it in due to discomfort.
-July 2015: Developed tingling/pins/needles/parasthesia in my L side of face starting around my L nostril and going down to my L upper lip. Was concerned it was from #11 because it was in the same area (which was a prior apicoectomy done in 2011.
Saw same endodontist who performed the tx on #11 in 2011, he said the tooth was still fine. He did not think the parasthesia was from that tooth. Saw another endodontist for second opinion, he also did not see anything on xray that would indicate it had failed. Saw my general dentist who took a CBCT scan, saw nothing abnormal. Sent the CBCT to "Beamreaders" for another opinion to what was causing the tingling/numbness, (or any of my other L side pain) they did not find anything of note either. Was advised by an Oral surgeon/implant dentist to live with the symptoms, as there was not good bone level in that area for an implant due to the prior surgeries, so extraction should only be done if there was definite reason. Stopped wearing the upper splint at this time and asked for a lower splint to try instead, because the upper splint was intolerably uncomfortable.
-August 2015: Developed sudden pain and temperature sensitivity in tooth #7. Saw general dentist and had endodontic evaluation, nothing abnormal was seen except for extremely short/blunted roots on #7 (and all my front upper teeth) from the early and aggressive braces, as well as some calcification in #7. #7 was still vital. Opted to try to wait and see if symptoms resolved.
-Sept 2015: Area of burning and redness developed in palate behind #7 which seemed to come and go. Had success stopping the numbness and tingling in L side of face and lip by using antinflammatories. Started using high dose tumeric capsules (on advice from my MD), and the parasthesia resolved as long as I continued to take the capsules. Got rigid acrylic lower splint from TMJ dentist which was much more comfortable. Was easily able to comply with wearing it nightly. Splint was supposed to protect my teeth in case nightime clenching behavior was behind the chronic pain and to somewhat stabilize the TMJ joint which clicked on the L side.
-October 2015: Could no longer live with the pain of #7 and decided to get RCT. RCT was very helpful, took away thermal sensitivity and about 99% of the pain (still get an odd twinge here and here.)
-November 2015: The upper L side pain (which I had been living with for almost a year by this point) got worse. Had hours/days of pain if I tried to chew on that side, and the upper L teeth hurt when chewing. Pain spread into my face to my cheekbone. Had another endodontic evaluation. Still no definitive dx was found, but because #15 had a previous deep filling (after amalgam replacement in 2008) they thought it could be irritating the nerve. Tried again to wait out symptoms, but the pain was intolerable.

-Dec 2015. Had RCT on #15. Relief of pain on upper L was immediately noted bust still could not put pressure on it. Pain started on lower right tooth #29, in gum around tooth. Saw university oral pain clinic which ordered MRI of brain and trigeminal nerve, MRI showed nothing. They suggested Gabapentin to see if it helped but they did not give me a diagnosis or tell me what might be causing it. I did not take Gabapentin because I am a stay at home mother of 2 young children and it really worried me to take a medicine that affected my brain.

-Jan 2015: Had implant to replace #19. I was very afraid but the surgery was fine. No issues. 4 days after tooth #20 started hurting the worst it has ever been. Went back to endodontist and almost cried when he tapped on it. They did an immediate RCT of #20 which immediately relieved the horrible pain. For the first time in a whole year I had no pain on the lower left. 2 weeks later went in to get crown prep for tooth #15 which set off the worst pain I have felt yet. Endured 2 weeks of throbbing awful 9/10 pain until it semi-calmed down.

-Feb 2015: Had permanent crown on #15 which made the tooth agonizing again. Went through a period of 72 hours where I could not sleep. Had #15 extracted thinking/hoping there was a crack. Dentist did not see a crack after extraction but I had immediate relief.

I was now FINALLY out of pain on my left side after over a year, but now had pain on my right side in both my lower left tooth (#29) and it started in my upper left teeth, but mildly. Because of my success in getting out of pain on my left from the extraction of #15 and the RCT of #20, I decided to go get #29 root canaled as well, in hopes that it would be the END and I would go back to my normal life.

It turned out to be the biggest mistake of my life and I think I will always regret it. Unlike the prior root canals, this one did not help the pain and actually made it worse. I now cannot chew on either my left or right side (left because I have two extractions and a healing implant) and right because the tooth I just had root canaled hurts so much and I now have pain developing on the upper right teeth as well which seems to be increasing.

I looked back at my life over the last year and saw that I am now completely reversed (pain on the other side) but my quality of life is no better, and actually worse because I now have no safe chewing surface. I have had 4 root canals, 2 extraction, and an implant in the last 9 months. I have had 2 CBCT scans, 1 MRI, seen 8 dentists/endodontists/TMJ dentists, my PCP and an ENT. I have had 32 xrays. I have been on motrin since July which barely helps. I am in pain all the time and I cannot chew, I can barely parent my kids and am becoming angry towards the world and depressed. I am only 35 and in otherwise great health.

I now am looking for other reasons this might be happening to me, and found this forum. Could this be TN? If so, why has no one suggested it until now? They have been treating it as severe dental trauma from night clenching/TMJ. The university mentioned it could be trigeminal nerve damage from the virus in Sept 2014, but that was when it was all on the left side, and the MRI was negative so they did not mention it further.

2

I’m sorry your going threw this I for sure know what its like to want to rip your teeth out and them hurting ( beyond hurting) all the time. I can’t even find anyone to try a root canal etc because on xray everything shows fine…the drs keep telling me its not my teeth but the trigeminal nerve but sometimes I don’t know if I believe it. For my peace of mind I’d like to just try one to see if it works but they won’t. How did you get them to do it if xrays were fine??

3

I don't know! In retrospect maybe they should not have done them but I was in SO much pain and pain from a tooth is a reason to do a root canal. My dentist told me to hold off on root canals and I waited 8 months and then started doing them. Root canal #1 was a great success. I still have no pain there. #2 was not a success---I ended up getting the tooth extracted 2 months later and now have no pain there but had huge pain in between. Root canal #3 was a huge success, the pain stopped immediately and is still gone (and that was my most painful tooth). Root canal #4 is my biggest regret. I just had it 4 days ago. Pain is so much worse now in that area and now another tooth above it hurts. I can't even fathom trying #5 and honestly the endodontist probably won't do it anyway. He is the one who told me to see a pain clinic because he was afraid I had something else wrong with me.

4

Hi Wren,

You have been through a lot. I had one root canal after TN started trying to get rid of the pain. I didn't need it and it didn't work. If I had every tooth pulled that hurt I would have no teeth left. A lot of us start off in the dental chair and lots of us have extractions and RCs that aren't needed. I have talked with people that have no teeth left on their TN side.

The fact that no one mentioned TN is not rare. A lot of dentists don't even know about it which is why it takes so many people years to get a diagnosis.

One thing about TN that can be super confusing is that it can come and go and move around. The pain can hang out in one place for months or years at a time or it can be different every day.

I don't know if you have TN but I do think maybe you should stop having dental work and consider trying a nerve medication. One clue that it is neurological is that pain pills and anti-inflammatories won't work. Talk to your GP to see if you can start medication and get a referral to a neurologist.

Jane

5

thank you Jane,

The confusing thing is that up until this last root canal, Ibuprofen did work well to get rid of the pain, and at least 2 root canals were successful in getting rid of the pain and one extraction was very successful as well---But it did then move. And now I have one very painful root canal that did not work.

I have asked to see a neurologist, I just emailed my doctor tonight. The thing is that I am a stay at home mother of two really young kids. I am not going to be able to take any medication that messes with my brain, no narcotics or anything to make me sleepy or altered conciousness. That is why I did not try the Gabapentin trial the university suggested. Any thoughts about that? What could I try that would not change my perception or make me tired and unable to be alone with young kids?

6

I take gabapentin you should be fine on it. Just start at a very low dose

7

I think Advil will help some people but more at the beginning. Once TN gets bad it definitely doesn't work. I have been there with the dentists, the TMJ specialists, the anti-biotics and pain pills. It is just a pretty common story with us. I don't know how it is that having an RC could work if it were the nerve?? But the fact that your pain moved elsewhere does sound like nerves, so does the amount of teeth you have had problems with. Was there physical evidence of a problem with all of those teeth? Or was the decision to RC or extract reached because of the pain?

My daughter was four when this started for me so I understand completely. I can never take pain medication for that reason. There are times it would have been helpful but it doesn't generally work for TN and it is just a band aid solution. Either an anti-convulsant or a tricyclic anti-depressant are used for this. Many of us do function very well on our medication. I work, am a single mom and own my own home. I have had some really tough times but if you find a med that can help it can make a world of difference. These meds can have side effects, especially at first...but if the med starts working you will probably get used to the side effects. My med just causes dry mouth, I'm a bit more tired at night and some weight gain. It is more then a fair trade off for the pain. I try to plan starting a new med with a couple of days off work and make sure I have some support handy for my daughter if need be---her dad, grandma, etc. even just for a few days can make a difference.

Jane

8

Jennifer, does the gabapentin help you? You seem to still be in pain!

9

Jane, thank you, that was very helpful.

10

The root canals were done based on pain alone, no evidence of decay or anything on xray. But the fact that 2 worked to completely relieve pain, 1 did not but a subsequent extraction did, and 1 made everything worse....I just don't know hoe to interpret that information.

justjane37 said:

I think Advil will help some people but more at the beginning. Once TN gets bad it definitely doesn't work. I have been there with the dentists, the TMJ specialists, the anti-biotics and pain pills. It is just a pretty common story with us. I don't know how it is that having an RC could work if it were the nerve?? But the fact that your pain moved elsewhere does sound like nerves, so does the amount of teeth you have had problems with. Was there physical evidence of a problem with all of those teeth? Or was the decision to RC or extract reached because of the pain?

My daughter was four when this started for me so I understand completely. I can never take pain medication for that reason. There are times it would have been helpful but it doesn't generally work for TN and it is just a band aid solution. Either an anti-convulsant or a tricyclic anti-depressant are used for this. Many of us do function very well on our medication. I work, am a single mom and own my own home. I have had some really tough times but if you find a med that can help it can make a world of difference. These meds can have side effects, especially at first...but if the med starts working you will probably get used to the side effects. My med just causes dry mouth, I'm a bit more tired at night and some weight gain. It is more then a fair trade off for the pain. I try to plan starting a new med with a couple of days off work and make sure I have some support handy for my daughter if need be---her dad, grandma, etc. even just for a few days can make a difference.

Jane

11

Before meds my pain was a 20 on a scale of 1-10 now I’m a 3-7 mostly a 5 or 6. Which is still very painful but I’ll take it over a 20 any day. These meds effect everybody different also.

12

Hi Wren,

First of all, I'm so sorry that you've been in pain and had to go through these nasty dental procedures!

If Advil helps, then it could be TMJ. Generally, anti-inflammatories don't work well for neuropathic pain. TMJ often refers pain to your ear and is more likely to be bilateral than TN. But if the anti-inflammatories now don't work, then it could suggest a nerve involvement. A lot of times, dental work can trigger neuropathic pain. The incidence of dysaesthesia from implants is as high as 13% in some studies.

I would suggest that you avoid further dental work unless there is a definitive diagnosis of abscess based on x-rays and give the nerve medications a try. I developed neuropathic pain after getting a wisdom tooth extraction and went around to different dentists, oral surgeons, and orofacial pain specialists. Carbamazepine ultimately worked quite well for me and it was my positive response to it that confirmed my diagnosis. If you "start low and go slow" with the dose, nerve pain medications are less likely to have noticeable side effects. Think about it this way - your functioning while at moderate to severe pain is already compromised, so having a manageable pain level can actually improve your ability to care for your kids.