Atypical facial pain

Judythecat

Judythecat

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Can any dentists offer any reassurance, please?

After months of pain, a million dental and hospital appointments, and numerous tests, I have been diagnosed with atypical facial pain. The pain has been mainly in my upper left teeth and gums, usually at the front, sometimes the lower left. Sometimes it’s aching in my teeth, sometimes it’s burning in my gums.

In the last week or so it has moved to the right, located in the gums, mainly on the cheek side of a lower molar which has previously had root canal. Is this move normal or should I be worried? The tooth itself isn’t sore, there are no concerns about hot or cold, the gum is not swollen or red, and touching it doesn’t hurt.

I had a checkup just this week, no tooth issues were found, and my gum “scores” were 0 and 1.

I’ve been offered medication to blunt the nerves, but don’t fancy it much. Funnily enough, since getting a diagnosis I felt things were much “quieter” on the pain front. I think being reassured that all my teeth are fine and it’s just a nerve thing really calmed me down.
 
Gordon

Gordon

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It's not unusual for AFP, it's one of the characteristics of the beastie :)
 
Judythecat

Judythecat

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It's not unusual for AFP, it's one of the characteristics of the beastie :)

Thanks so much for replying - the horrible thing about it is that I am never sure if it's actually a bad tooth, or if it's "just" the nerves. I figured a tooth going bad immediately after a check-up would be unlikely, but that root canal molar took about six weeks to totally settle, so I am paranoid about it. Today the pain is in the gums around the molar (lower left) and in the gums of the teeth above it above it, mainly round my wisdom tooth. It burns!
 
Gordon

Gordon

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My sympathies, I've seen people utterly driven to despair with this condition. Hope you get some resolution soon. Meantime have a long distance hug from me, since I can't do anything else :) <HUG>
 
Judythecat

Judythecat

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My sympathies, I've seen people utterly driven to despair with this condition. Hope you get some resolution soon. Meantime have a long distance hug from me, since I can't do anything else :) <HUG>

Bless you. I am pleased to finally have a diagnosis - there was a terrible period where I was convinced my teeth were all packing in, my dentist was sick of my face because I was going with pain in different teeth so often, and the teeth were all fine. I felt like I was going quite mad. I brought a load of fancy biscuits into the surgery to thank everyone for being so kind and patient!

The Max-Fac consultant thinks it’s been triggered by a combination of stress, and a series of dental treatments, which were caused by clenching my teeth due to stress. The source of the stress has largely been removed - my partner was made redundant, but is now working again - and I have just asked to drop my hours at work to four days, so I hope it might eventually settle. I came across an information leaflet from a hospital in oxford which recommended a supplement called Alpha Lipoic Acid, so I got some of that yesterday to try, and I am back at MF in December.
 
Judythecat

Judythecat

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I ended up going to the dentist today because I had been worrying myself silly that the root canal molar had an infection lurking under it. The tooth has been a bit tender. She did a load of tapping, gum probing, and x-rays top and bottom, but everything looked okay. Gums deemed “perfect”. Apparently the muscles at the back of my mouth are very swollen. My jaw has felt really stiff lately. She said the whole lot was a combination of the nerve stuff and clenching, and there was no “dental issue” indicated or requiring treatment.

Gordon, if you’re around, does this sound right? Despite the fact I saw the x-rays, and trust my dentist 100%, my endless googling tells me tenderness means infection?

If anyone has any tips re clenching, I would LOVE to hear them. I have actually just today arranged to reduce my hours at work to see if that helps with stress, and while I wear my mouthguard absolutely religiously, I know it just protects the teeth rather than stopping the problem. Would hypnosis help?
 
Gordon

Gordon

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Well, without seeing you or the x-rays, the best I can do is say that it sounds entirely plausible, clenching/grinding can certainly cause tenderness that you describe.

Stress certainly links to dental issues, so anything you can do to reduce the stress levels will help. Hypnosis is occasionally effective for clenching, Mike on here is an expert on dental hypnosis, so it might be worth PM'ing him about it.

NLP can also help which should be available through the NHS if your GP refers you for it.
 
Judythecat

Judythecat

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Well, without seeing you or the x-rays, the best I can do is say that it sounds entirely plausible, clenching/grinding can certainly cause tenderness that you describe.

Stress certainly links to dental issues, so anything you can do to reduce the stress levels will help. Hypnosis is occasionally effective for clenching, Mike on here is an expert on dental hypnosis, so it might be worth PM'ing him about it.

NLP can also help which should be available through the NHS if your GP refers you for it.

Thank you so much, Gordon. The fact the pain has moved sides in my face is what makes me really nervous, and that the tooth has previously had work on it. (My dentist is excellent, and even I could see that there were no shadows on the x-rays which helped.) I am possibly a wee bit unusual on this forum in that I am not scared of the dentist or treatment, I have just been through the mill in the last year or so which has made me slightly demented.

Getting a dental appointment is a breeze compared to seeing a doctor, but I'm happy to pay for any sort of treatment that helps. I have read about a thing that goes in your ears, beginning with a C?
 
K

Kns

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I have been facing a very similar situation and it’s making me feel like I’m going crazy. Please keep us updated on whether or how you find relief or answers. Sending you good wishes! This is definitely not fun.
 
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patiku

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I too have AFP or atypical Trigeminal Neuralgia. I had it for 2 years now ,triggered by root canal. For first year I was in terrible pain ,I am much better now (although still suffering a bit). I was taking b12 5000 and pregablin .
 
Judythecat

Judythecat

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I have been offered amitryptiline - I know that is not the correct spelling - but am too scared to try it.
 
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patiku

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I have tried amytryptyline ,carbamazopine , lamotigine but they didn't seem to help.
 
letsconnect

letsconnect

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I was also going to suggest Vitamin B12 5000 - my GP prescribed it for nerve pain (not facial) and it seemed to help (either that or it was a coincidence that the nerve pain disappeared after a while). I wasn't sure if it's ever used for facial pain, but now that patiku has mentioned it... Seeing how it doesn't have any side effects, it might be worth trying (if you haven't done so already).
 
Judythecat

Judythecat

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I was also going to suggest Vitamin B12 5000 - my GP prescribed it for nerve pain (not facial) and it seemed to help (either that or it was a coincidence that the nerve pain disappeared after a while). I wasn't sure if it's ever used for facial pain, but now that patiku has mentioned it... Seeing how it doesn't have any side effects, it might be worth trying (if you haven't done so already).

I will get some of this tomorrow, thank you. I am taking hypericum, which helps a bit.
 
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Kim27

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I’m facing something extremely similar to you and it’s miserable! Wish I had better advice. Please keep us updated!
 
A

Acheygirl

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I know this is an older thread but I also am having the same symptoms however I have not been officially diagnosed I am really thinking this is the case. Does anyone get improvement?
 
Judythecat

Judythecat

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Hi, this was my thread. I take a high dose of B12, and alpha lipoic acid. Generally it stays at a low or moderate level, but can flare up if I am run down or stressed. I am on three monthly checkups at the dentist because I worry when the pain shifts about. I know people have success with medication but I am keen to avoid that as long as I can.
 
A

Acheygirl

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Judythecat thank you for your response. That is encouraging that you can keep it manageable! When it flares how painful do you get? Would you mind sharing the dose of your suppliments and how often you take them? I am happy you are managing this. You know what I worry about is if I actually do have this condition how would I decipher a nerve flare from a real dying tooth? Thanks again for taking the time to reply.:)
 
Judythecat

Judythecat

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I take 200mg of ALA, and two B12 tablets - I can’t remember what the strength of those is. I take them daily, after my evening meal.

If the pain is bad, and it has moved to a new location, the acid test for me is if it is in only one tooth. If it is, and it lasts a few days, I might ring the dentist to get it checked. If it is a new location and multiple teeth, I try to be logical about it because I know it’s unlikely two teeth have simultaneously gone bust. Having three monthly checkups is useful for me to help keep my anxiety under control.
 
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Acheygirl

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Judythecat,

After reading your post I started taking sublingual b12. But pretty hefty dose about 6,000mcg. I have 3000mcg x2 per day. Not sure but perhaps there is a slight glimmer of hope that I have had a few decent days. If this continues to improve we might be on to something. Time will tell. I also got the ALA today and may slowly introduce this to my regimin. Thank you so much for offering this insight. I hope and pray you and anyone else dealing with this pain gets improvement!
 
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