Atypical facial pain, trigeminal neuralgia , your experiences please

[Greysowhat]

I have a problem with a tooth since a medium sized filling was put in it 20 months ago. Everything was fine that evening.. But the next day, 24 hours after the filling I got a migraine which is extremely rare for me. Also a nagging pain in the tooth followed by a few months of feeling headachy which is also extremely unusual as I am not a headache person at all. Also a slight numbness in lip beside it like the last bit of a dental anaesthetic wearing off. The pain in the tooth is right down in the root and I can feel it in my palate. I can go 6 to 8 weeks when it is kind of ok, I don't need pain relief but I am aware that it doesn't feel 100%. But then it will start with a niggle, build up over weeks and I will need Ibuprofen which helps, then peaks for a day or 2 with very bad pain, When it's very bad and I tap on the tooth I can feel the pain down in the root area. Also I feel some heat in my palate where the tooth root is. And I've had a few more migraines too, at the start of the pain getting bad and sometimes when it's in the easing off phase.

I've been back to dentist and endo many many times and had 2 root canal treatments. The endodontist has done a cone beam CT and says it looks fine, "no pathology", He says it's atypical facial pain or trigeminal neuralgia. Both more common in women of my age than in men he says. I say it's inflammatory as Ibuprofen definitely helps with the pain so I think there must be something wrong with the tooth causing inflammation. Yes the CT scan was clear but there are things that don't show like small fractures due to the resolution not being fine enough.

So if anyone with atypical facial pain or trigeminal neuralgia is about could you please share your experiences and tell me if you think that's what it could be.

Thanks!

Hi OP, I’m sorry you are going through this. Mine started after a failed root canal, the pain didn’t go away even when the tooth was removed. After that it moved onto a different tooth. I’ve had many extractions that I now suspect were unnecessary. The thing for me was finding the right medication. I was on amitriptylin for years but the effectiveness started to drop, after trial and error I’ve found gabapentine works better than anything. Also doing a pain management course specifically for tooth/head pain was brilliant at helping me cope with flare ups. I’m mostly pain free but I have regular flare ups, however I know the pattern and how to manage them, also I have eliminated personal triggers (some toothpastes/chewing gum/polo mints/flu and colds!). At the beginning of a flare up it starts with an ache deep in the bone, followed by pain but also a tingling feeling (like biting into a peppercorn) all around my gums, my gums also change in texture and sometimes taste different. The tooth is sensitive to bite on sometimes, other times it’s less painful when I’m eating. I often end up seeing my dentist to check there is nothing untoward going on, and he will confirm there’s nothing there. I then spend a few days talking myself down, reminding myself this flare up will end in a few days or weeks, sometimes I just let myself stop and do nothing for a day, that actually helps a lot, just acknowledging I need to rest and get through it.
From what you have said I wouldn’t be completely sure there isn’t something going on with that tooth, but I also think extremely bad pain (like an abscess, worse than childbirth in my experience) can trigger or damage nerves leading to nerve pain. My flare ups don’t get much relief from paracetamol/ibruprofen but they can take the edge off when the pain is extreme (this is very rare now). Even if it is diagnosed the doctors still need to treat you. There’s lots of medication that can help. If you are in the uk ask to be referred to Eastman College Dental Hospital in London. If you can afford it go for a 3d imaging scan, I read years ago about a woman who had similar pain and they found something from the scan (sorry I can’t remember what it is). Also don’t be surprised if the medication takes a while to work, it can take weeks - 3 months to work, with me I started feeling better after 3 weeks but it was a slow process. Remember if it is atypical facial pain it will ease off, it will also flare up, but you will get periods of calm. I’ve had this since my early 20’s, I still managed to travel the world, hold down a job and have a family. And I’m not particularly stoic or hardy, I’m a wuss to be honest. But I want you to know this pain as it is right now won’t last forever. DM if you need any more information x

A relative has trigeminal neuralgia but describes it as shooting, electric shock like bursts of facial pain, so quite a bit different to what you describe.
I’m sorry you’re going through this. The 3d scan pp mentioned sounds interesting.

Thank you so much for the super informative post. I never had an abscess on this tooth, the trouble all started 24 hours after a medium sized filling. So to me that says an inflammatory response to something especially as Ibuprofen really helps with it. I'm very reluctant to go with the atypical facial pain but from your story I might have to consider it as the problem. Although there is another thing I didn't include in my original post. Not long after the filling I noticed a dry scaly patch on my scalp. It's psoriasis. Now that is an inflammatory thing so it has me thinking that there is something inflammatory going on with the tooth. They flare up at the same time. Often I'll feel an itch on my scalp hours before the tooth starts up.

The only thing I've found that triggers it is if I use a water flosser on it. I suppose that could irritate the nerves or could irritate something wrong in the tooth itself. I just don't know. But am reluctant to go on meds. I am considering extraction but none of the dental professionals I've seen recommend it.

Yes, I've had neuralgia once about 30 years ago and it is awful, a shooting pain that would make you jump and wince at the same time, even cry out. I don't think that's what my problem is but the endodontist did suggest it.

@SinisterBumFacedCat is the 3D scan you mention a cone beam CT scan? I had that and it showed nothing. But then again some things don't show up on those like tiny fractures in the root. The dentist who did the original filling managed to leave decay underneath it so it wouldn't surprise me if she also did something else to cause this pain. It really does feel like it's coming from the tooth.

I have Trigeminal Neuralgia, I have three bands of pain which are quite distinct.

Along my jaw line I get shooting pains, numbness and tingling. Electric shock pains in my TMJ.

Pain deep in my eye socket, sounds weird but it feels like my eye should be bleeding.

A band of pain across my head, deep drilling pain but then the sensation of thousands of bugs crawling in my hair.

No one knows why it happened but at the same time I got a cracked tooth, really minor, even without the tooth though the pain continued.

Triggers are dental treatment, cold, slight breeze or a hair blowing against my face.

That sounds awful. 😧 Do you take any meds for it?

I have Trigrminal Neuralgia. I take Duloxetine for it, a standard dose when not in a flare and increased when in one. Flares last weeks and make life pretty miserable, I’m lucky to get periods of remission. Also thought it was a tooth at first, was sent to a specialist who confirmed it wasn’t tooth related.

Tge pain feels like gnawing constant nerve pain with spikes of electric shot, crawling, tingling feelings. The flares start with extreme tiredness, sometimes a leaky eye and nerve pain that feels like it’s in my gum. A line of pain across the jaw, one across the eye and the side of my scalp. Eating, brushing my teeth and air conditioning/wind make it worse.

I hope for your sake it’s not this. Before I was medicated I would writhe around for days moaning in pain. It’s debilitating when it’s angry. You could try some nerve painkillers to see if they help?

Thank you.. That sounds very hard to deal with, I wish you well.

I really don't think that I have a form of neuralgia, the symptoms just don't see to fit it .

I take a slow release version of carbamazepine - 1600mg. It just seems to have got under control but I am anticipating that winter won’t be kind

I have had TN for over 30 years. One of the distinguishing features is that ordinary painkillers don't really work to relieve the pain to any significant extent. I manage mine by avoiding my triggers, mainly wind and especially a cold one. I can be trapped inside for days at a time and this summer was awful. Although the sun was out we had a lot of days with a very cold breeze.

My pain takes the form of a deep ache punctuated by excruciating electric shocks through the roof of my mouth, the roots of my teeth and sometimes my cheekbones. I'm fortunate that the upper branch of the nerve to the eye area isn't affected.

Another indicator is that with TN the pain stops at the midline so if you are feeling pain across the centre as well then it is unlikely to be TN. I am unlucky enough to have it bilaterally but the shocks from both sides always stop at the middle even if both sides of my face are triggered.

Thanks everyone for sharing your experiences with TN and AFP. Best wishes to you all.

Just 1 more question, do you ever get any dizziness or light-headedness??

You said youve been at the dentist a few times. Have they numbed you up since in order to do work, and did that numb the pain? Im thinking if it did then it’s that tooth and it’s needing out. I don’t think I could handle that pain.

You can get deferred pain, for example i feel a root treated tooth gets sore when I have a heavy cold. So im never sure unril the cold goes away if I’ve done something to another tooth or not!

Maybe the dentists think you want to keep it and that’s why they’ve not suggested removal. It feels like something is needing done though. You can go on like this. That’s awful.

Any light headedness and dizziness I get, I put down to medication rather than the actual TN

I suffer from bilateral, atypical trigeminal neuralgia and what you describe isn't that. Neuralgia is like having a switch flipped and stops as suddenly as it starts. It's like electric. Like someone tasered you in the face and is revving an engine harder and harder until suddenly its gone.

What you describe sounds more like a very deep infection.

No dizziness. Sleep helps a lot. If I am having a flare up I need paracetamol to get to sleep, but then the pain stops. When I wake up I get a few minutes respite then it switches on like a light switch. My DH snores and my pain improved significantly once he had a CPAC machine, I stopped being woken up by snoring!

I don't think I was having the pain those times I was numbed up by the dentist so can't say. But the pain is helped with ibuprofen which makes me think there are some sort of inflammatory processes going on with the tooth. It seems to be also triggering migraines, not bad ones, just the aura and a slight headache. They usually happen at the start of a flare up of symptoms. When there is pain it is in the area or the tooth root. When I mentioned headaches and slight numbness in my lip the endodontist jumped to atypical facial pain or trigeminal neuralgia despite my telling him that ibuprofen helped the pain a lot unless it was extremely bad which has only happened 3 or 3 times in the last 20 months. And even then it would help ease it, just not completely cure it. Also holding iced water on the painful palate helps a lot when it is bad.

@Greysowhat, hi - did you manage to find the cause for your symptoms and discomfort? I have been experiencing very similar symptoms in the last couple of years that initially I thought were coming from a tooth that has had a root canal treatment twice. I have ache in the cheekbone on my left side, sometimes it feels like tingling as well, and am always ‘aware’ of that tooth. I often have feeling of fullness, sometimes pain in the ear on that side, as well as in the sinus. Also, sometimes I feel a sharpish ache on top of head on the left side as well. Lately, I have started experiencing pressure in my left eye which makes it water sometimes.

I have been to my dentist so many times for it but he cannot find a problem with the teeth. Last year I had another root canal treatment on the tooth I am ‘blaming’ for my discomfort where all the endodontist could find after a CT scan was a possible tiny root canal that hasn’t been treated. He opened the tooth through the crown and did the treatment. Things were not too bad for a while but then symptoms returned. I have also visited ENT specialist last year and the tests he did didn’t show problems with ears or sinuses. Last month I had a MRI scan on head and neck for something else and that came back clear. My dentist is reluctant to pull the tooth out or do any other treatment as he cannot see a problem on x-rays. I think maybe the tooth is cracked as I just feel it under pressure most of the time, but then I bite on it without pain. I am concerned that there is some infection that they are not seeing for some reason, especially when I feel like half my face aches and that makes me feel unwell. Ibuprofen doesn’t seem to have much effect.

@Greysowhat, I hope you have managed to find a resolution for your symptoms and are not suffering with them any more. I will be grateful for some advice, if anyone has had a similar problem and found the cause.