Atypical facial pain- anyone familiar?

[opalescent]

Last August I got a very mild toothache. My dentist did an x-ray, and said that I had a little bit of decay under an existing filling. She cleaned it out and re-filled. The pain got worse. By this point I had a really deep aching and burning in the tooth. My dentist carried out a root canal and the pain got worse again. She was baffled, and said that the rct has been textbook, and she could not see any reason for my ongoing pain. Eventually she extracted the tooth, when I couldn’t cope any more. The whole episode lasted about 9 weeks, and I ended up with a partial denture to replace the (visible) tooth, just before my wedding.

I started to wonder whether I had caused the pain, by clenching and grinding in the night, and whether the pain had been due to that, rather than an issue with the filling. I knew I had some history of this, because I had ground one of my Canines flat, but it had never caused me pain before. I was given a soft mouth guard, which I have worn religiously ever since.

Since the extraction, I started to experience all sorts of different aches and pains in various teeth. In March (Just before lockdown), I had an adhesive bridge fitted, to fill the gap. The whole area of the bridge has now ached ever since it was fitted. It is exactly the same deep ache and burn that the original tooth caused, now apparently focused on the tooth behind the original one that was lost. The pain can be manageable, but some days it feels searing, and spreads across the upper cheek area in a line. The bridge has been adjusted numerous times with no effect.

My whole mouth feels wrong. My teeth don’t feel like they fit together properly. I have had aching and pain every single day since last August. Countless dental appointments. I feel in despair. I want to have the bridge removed, but that will only leave me with an ugly gap, and needing to have an alternative which will no doubt be just as problematic.

I had it adjusted only this Monday, but still the pain remains. My dentist x-rayed the whole area, and could find no issues.

I have paid to see two private dentists during lockdown, and both just said I needed a mouth guard. No one seems remotely interested.
The pain and experience I have had seems to fit perfectly with a presentation of atypical facial pain, and there are whole communities of people on Facebook who have had similar experiences.

I don’t even know who to speak to about this any more 😔

Please help!

[curlyfries]

Hi,
I have similar, but I was diagnosed with TMJ disorder. I had a root canal around 7 months ago, the dentis spent hours, and eventually said he couldn’t complete it! I went to a specialist who completed the RCT.
Since then I have various aches and pains in my face, a pain that feels deep in my jaw, pain in cheek bone, earache and even pain down my neck into breast bone. I’ve been discharged from max facial who advised wearing a mouth guard, but I still wake with aches and pains even after wearing one. I now take regular pain killers and am scared of going anywhere near the dentist again! 😕

[mogloveseggs]

It could be tmj?
I had a teeth cleaning done just before lockdown and since then have suffered greatly with tmj even going to the emergency dentist who said I need a gum shield.
I am in daily discomfort and it flares up probably about every 6 weeks.
Chemist recommended 400mg ibuprofen alternated with paramol.
This helps greatly (I only take it when there's a flare up).
I have to go to the dentist soon as die a check up and I'm dreading it. If I get another flare up I'll be off work and I can't afford to be

[WrongKindOfFace]

It could well be tmjd or even sinus issues, although I think that more usually affects back teeth?

Have you been prescribed any medication to help? They would usually prescribe something for nerve pain like amitriptyline.

[Judystilldreamsofhorses]

Me! I started in 2017 with a cracked filling, which was redone, then a root canal, and eventually the tooth extracted (lower molar so not visible). I then started to get pain in all my back teeth, and my dentist could find no cause. I swear I went there about 50 times that year. Over Christmas I was in such pain that she referred me to a root canal specialist for one of the upper back teeth, and he agreed to treat it despite seeing no issues, because it did have a big filling.

That actually did solve that problem, although it cost a bloody fortune, but I then started to get pain in my front teeth. I do have fillings in the back ones, but my front teeth are all “virgin”. Eventually my dentist referred me to maxillo-facial, where I had a load of tests, including an MRI. And finally a diagnosis!

My pain was/is like a burning pain, and I also can get a pins and needles sensation in my lower lip. The pain can be right up in my nose sometimes, and is often in the gums rather than my actual teeth.

I was offered amitryptiline (that will not be the correct spelling) but chose not to take it because of side effects. I now take a high dose vitamin B supplement (I think it’s B12j and alpha lipoic acid, which helps, but honestly, having a diagnosis was such a big help. My consultant basically described it as my nerves “mis-firing”.

I do clench my teeth, which is what caused the initial incident, so wear a night guard religiously. (I didn’t know I was doing it until I broke that filling.)

I am on three month checkups, because I am paranoid that pain us teeth not nerves, and my dentist is happy to see me if I need to call in if the pain moves to a new spot or I am worried.

My dentist was absolutely fantastic throughout. There were times when I was crying in her room, begging her to extract all my teeth, and obviously she was utterly baffled by it all. I know you’ve said you have seen several dentists, but in my experience having consistency of care was really key and still is, because my dentist knows my mouth and can spot any changes.

[Judystilldreamsofhorses]

Bloody hell, sorry that was so long. Just to add, I started off with a soft night guard and now have a rigid one which seems to work better for me.

[Coconut80]

You need to see a neurologist not a dentist. I have atypical facial pain and it is horrific. The treatments are often medications with horrible side effects. I get burning, stabbing and throbbing from in ear across nerve to nose and under eye. It is utterly excruciating. Good luck xc

[opalescent]

Thank you all so much for taking the time to reply. @Judystilldreamsofhorses I feel like our experiences are so similar. I really really want to see a specialist but I don’t know who to pursue this through. Might my GP be able to help?
Unfortunately I have seen so many people about the various issues, that there is no one individual who knows all of the backstory. I currently have both a private and and NHS dentist, neither have talked about referring me on. I’m wondering whether I should write it all down and discuss with my GP.

[Judystilldreamsofhorses]

@opalescent I am not sure, but I don't think a GP is likely to have much to do with your mouth, so I might be inclined to pick a dentist and stick with them.

I honestly feel like my relationship with my dentist was the key to all of it, because she knows I'm not prone to histrionics. Prior to this I trotted along every six months for a checkup, and rarely ever needed treatment! I was going back and forth pretty much every week in terrible pain, and she was literally scratching her head, bemused. Maybe she just referred me to get shot of me!

I think in my case the teeth-clenching made it a bit more complicated, because in theory it could have been that I was "bruising" my teeth by gnashing them. It was when my front teeth became involved that she decided enough was enough.

When I was referred to Max-Fac it took a wee while for the appointment to come through, but the consultant there was fantastic. He did a whole head x-ray which I hadn't had before (and which showed nothing wrong!), examined my teeth really thoroughly, then sent me off for blood tests and an MRI scan.

I was discharged from there last year, mainly because I didn't want to take the medication on offer, and there wasn't much they could do for me. As I said, I am on three month checks with my own dentist, and the Max-Fac referral can be reopened at any point if I did want to go back to them.

Ironically, my teeth are nice and white and straight, and get lots of compliments - it is such a weird condition, and I really hope you can find some answers.

[Lolly12]

This all sounds so familiar to me after more than a year of horrible tooth/face ache and numerous trips to the dentists/drs.

Mine started after i felt pain in a top molar after biting a nut. Was convinced i had a crack but saw about 5 different dentists and nothing showed up on xray so was on Naproxen for the pain for months. Went away for a while then came back with a vengeance, constant ache, with some numbness and tingling of cheek and lips. Had root canal that made it worse then had extraction. But still in pain.

GP referred to max-fax and saw lovely dr who was very thorough and ordered MRI. She also prescribed low dose amitriptyline which i've been taking without any side-effects and has helped with pain (if i forget to take for a day or two i notice the pain coming back). MRI wasn't conclusive but possible blood vessel touching nerve which could be cause. Awaiting another follow-up appointment that should have had in June but postponed.

Hope you get it sorted. I really regret having my (most likely healthy) tooth extracted

[opalescent]

Wow. So many similar experiences! Thank you for sharing all. I will push for a referral on I think. I am really living day to day on painkillers and it cannot continue.

[opalescent]

Lolly your story is almost identical! Can I ask what dose of amityrptilline you are on? So glad it gives you relief.

[Lolly12]

@opalescent

Lolly your story is almost identical! Can I ask what dose of amityrptilline you are on? So glad it gives you relief.

I’m on 10mg. Just take every evening (when I remember)... they said to take no later than 8pm but I’ve taken up to 10pm on occasions and not had any issues with feeling drowsy or groggy in the morning.

[Starrr123]

How is everyone now? Did anything help? X

[TPMG]

Hi. How is the pain now?. Any relief. I think I'm living this nightmare.

[opalescent]

@TPMG I think my pain stems from the pressure that I exert on my teeth by grinding and clenching at night. A properly adjusted mouth guard, which spreads the pressure more evenly across my teeth- has helped a lot. Any chance you could be doing the same?

[TPMG]

I have a lower biteguard and in all honesty it makes things worse x

[TPMG]

I have an upper biteguard now. How long till you had any relief from the bitrguard. I have had I 6 days now and no question I'm grinding as I wake up clenching. How many weeks till I may feel relief

[TPMG]

Almost 3 weeks of biteguard now and no relief. Can you advise me how it took to get relief xx