TMJ/Atypical facial pain/Dental Woes - Help!

[clarencebean]

I have a very long and complicated (and probably boring!) history with facial pain and dental woes. I was just reaching out in hope that someone may have some pointers for things I haven't tried.

When I was a kid I fell over and smacked my front teeth. Apparently dentist said all was fine and that was that. As I got older the crumbled and I had them filled. I eventually had them root canal'd and crowned when I was 16, and was very happy, they were amazing caps and make my smile look great.

About three years ago the pain came back but this time went from the front to right side of my face. By this time I was at the dental hospital and was being seen by dental students. They said I needed a root canal on a big filling (although I couldn't pinpoint the pain to that tooth because it all hurt!) so I had this done. This went wrong (punctured through to my jaw) and so the tooth had to come out. After this the pain went nuts. Burning sensation and bad discomfort.

After the mistake I decided I should probably get myself a private dentist,I had a CT scan that showed my two front teeth had cracked at the roots from when i fell over and I had infection in the front of my jaw to my nose. These teeth also came out and were replaced with implants. These made the pain worse and if i tongue the on the right, its uncomfortable. My new dentist ( I have since moved , says they've healed well and are fine)

This was three years ago and I am still in pain. I have seen maxillo, several dentists and pain management. I was initally being treated for Trigeminal Neuralgia, and now it's being treated as a more general pain (Atypical Facial pain). I have been told to stop my meds for TN(which didnt really help anyway) and am waiting to see someone that deals with more neurological pain and will probably treat the pain like a migrane. The pain consists of tooth ache, burning in my face, headaches, and jaw ache.

I also have TMJ, and clench. I have just been told by my dentist I've cracked a back tooth, that will need to be crowned and may have possibly cracked two more included a tooth next to my front implants, but he can't be sure. I'm gutted.

I am at my wits end. I'm coping quite well, although there have been points in this journey where I haven't and have been a googling wreck. I also saw a psychiatrist (I have a history of depression and anxiety) and we did end up talking about this whole tooth/face ideal, and it really helped.

I was wondering if anyone has tried complimentary therapies, seen specialists or has any products or tips they use. Really interested in Hypnosis, and someone has also mentioned EMDR to help.

I'm only 29 and not having any answers for the future is driving me nuts. I have paid to see several private specialists, and as well as the implants etc so am fed up of spending money. I know this a long post, if you got this far i really appreciate you reading!

Forgot to say when i had them crowned they hurt, so pain started at about age 15!

That sounds awful Clarence. I have TN and feel for anyone with facial pain as it's the worst pain I've ever expereinced. I was lucky because the meds do work for me (mostly) but I found the months while my medication was being trialled and modified to be the worst months of my life so far. My greatest fear was that they wouldn't work and I still worry that they will stop working, as it's a known thing for them to become ineffective at some point down the line.

There are good TMJ phsio exercises online that might help with the clenching etc.

I know that anything going on with my face (a pimple, a cold breeze etc) can irritate and trigger what pain I still do have so I imagine the problems you've had with your teeth can be a massive contributing factor to what's going on.

God, poor you. I really understand where you are coming from. I suffered on and off for about 10 years. It could be gone for months and then would get a flare up. The pain was so bad I would often vomit because of it. In the end my dentist completely removed the tooth, took all the roots out. I had had a root canal but constantly had seering pain in the dead tooth and often lots of other teeth too. Clearly a nerve problem. The dental consultant at the hospital was useless. Once he completely numbed my whole mouth with about 6 deep injections. I remember him looking smuggly at his room full of students and then at me. I told him it still hurt. At that point he told me he couldn't help me. Wanker.

When it was really bad the only thing that worked foe me was a complimentary treatment called the Bowen technique. Pain killers made absolutely no difference to the pain. I really hope you find something. Try Bowen, you've got nothing to lose. X

Big, I had a tooth removed because they thought that was the cause of my pain. Then when I went back they assumed dry socket. Nope.

They numbed me up and removed and replaced an old filling in case that was the problem.

When I walked out of the surgery, I was so numb my voice sounded funny, but I was still in agony. I took myself to the gp instead.

What meds were you on, Clarence?

Hi!

I had two root canals I didn't need because no-one thought it could be a nerve problem. I take pregablin and lamotragine, though I am on tiny doses of those now. I usually just take ibrophen in the morning to help with the ache of my grinding and them sometimes paracetamol if the pain gets nervy. Though it is always painful and uncomfortable. :-(

By some weird serendipitous chance today, I was only my bike stopped at a traffic light and saw an A-board for a complimentary therapy clinic, with a list of possible treatments including 'Bower'. I'd never heard of it before you said Big. I've booked in for a 50 min treatment next week. So fingers crossed it offers some relief :-)

Some Doctors/Dentists just are effin' wankers. My dentist atm doesn't have a great bedside manner, but I trust his years of treating teeth. Though I did have a little cry after I left his office last week (when he told me I needed a crown) because he told me off because I got upset at needing more work done and being in pain. However, I have an incredible GP so she balances it out :)

x

I also have a book about trigger points. It shows how these can cause pain in various parts of the body. i learnt when trigger points in my jaw were causing tooth pain.
clarencebean I really hope that Bowen helps you. it's an odd treatment as the therapist doesn't seem to 'do' much. There is a bit of very light manipulation and then you are left for a few minutes. Bowen helps to align the whole body.
Facial nerve pain is very poorly understood IME. Which is sad as i'm sure there are a lot of unnecessary extractions done because of it.

If the ibuprofen and/or paracetamol have any effect, then there is more than nerve pain at play. They are completely ineffective in neuropathy/neuralgia. I take great whacking doses of gabapentin to keep mine in check but always have some tooth/ear ache or sensations on my face to remind me that it's there.

Thanks @bigbuttons. Sorry BOWEN, not Bower. I will let you know how I find it. Will also look into trigger points.

I just usually take the paracetamol/ibuprofen when I get a headache from the tension and sore jaw joint from the grinding. Yeh 'nervy' was a bad word. They don't really help the burning/ache pain I have. I didn't find much relief (about 10%) from pregablin or lamotragin and ametryptalin just wiped me out. Apparently the next step is migraine medication. Glad you've found something that at least offers a little bit of relief, these meds aren'y much fun :-(

I also have a cracked tooth apparently, so that is where some of the pain is coming from, though that's a new pain/development. siiiigh

the face burning sensation is odd isn't it? You know this is the first time ever that I have talked with people who understand what this pain feels like. My flare ups would usually happen on a miss bite, like if i hadn't expected something hard to be in my food. I had got into the habit of biting down very gently on anything I ate incase I crunched into something too quickly. If I did that then my face would immediately become like it was on fire and the pain would start, within seconds.
I am sorry that you are still suffering though

my ears would often feel stuffy and would 'pop'

Oh, the pain of mis-biting! That would make me jump in my seat and be unable to speak or breathe for a moment. And when the water from my toothbrush would drip onto one particular tooth then I'd have the same.

I hate that facial pain can be some complicated with dental issues and you don't always know what's to blame!

Clarence, my gp prescribed strong co-codamol when I was first diagnosed, to work until the carbamazepine kicked it. Only it's completely ineffective. I think he was just trying to help, but it's a worry that some GPs have no idea.

The carbamazepine made me ill, so I can relate to the wiped out feeling.
How much pregablin are you on and have you tried other things? My sister took gabapentin for neuropathy and found pregablin less effective but more tolerable for her. I have really annoying side effects, but can put up with them. It took me months of slowly raising my dose before I had relief though. Is it worth checking that they have tried an effective dose before stopping the TN meds?

Hi again,

Ah, unexpected hard things in food just gives me the willies.

I take 100mg of Pregablin and 100mg of Lamotragine (prob spelt both of these wrong).

I am not really sure what to do. I am doing my Masters at the moment, and the idea of putting on wait, feeling sick and sleepy stresses me out as I go into my final year.

In a lot of pain today, and got some blues. But trying to stay posi :)

BigButtons it can be the burning that the hardest big for me. I feel like I've been hit in the face :-(

X

I used to say to my kids "touch my face, it's on fire isn't it? Does it feel really hot?"
Of course it felt perfectly normal to them.

You are on low doses of both of those meds. Pregablin is usually effective at a dose of between 150mg and 600mg and Lamotritinge is effective at approx 400mg. Could you discuss whether you are on effective doses of those before stopping them? I was lucky enough to get an appt (privately to start with - kerching!) with a neurologist. He gave me a second opinion as far as medication is concerned including the doseage.

The first one they put me on sort of managed my pain, but when I raised my dose when the attacks of pain continued, it hammered me. I couldn't stay awake whatever I was doing and couldn't walk in a straight line.

I'm on 1800mg a day of the gabapentin as any lower gave me attacks of pain. But the side effects of memory issues/spelling problems/twitching and constantly saying the wrong words are a huge pain in the neck in my job as a teacher. Better than agony though.

I hate the burning pain. Mostly I get a grinding pain in my jaw or a stabbing pain in my ear. And I've spent some days constantly brushing hair off my face that was irritating me before realising that my hair wasn't brushing my face, it was a sensation in my face that was bothering me.

Facial pain is such a mystery. And therefore a nightmare to diagnose. I've had MRIs/lumbar punctures and all sorts and all I get told is that my pain is 'consistent with TN'.

Are you a member of the facial pain association? I hear they are helpful.

I have had tmd for years. I now have botox injections into the muscles of my jaw. It has eliminated the migraines completely. All on the NHS, you need to see an oral surgeon. I suffered for years, now hardly any symptoms unless the injections are wearing off, then I book in again! Also, a mouth guard will help with the grinding

OP. I'm a dentist and what strikes me is that:

1. You might have more than one pathology. The pain on miss-biting (great terminology: I shall use it in future) is very characteristic of a crack. You have other symptoms of atypical facial pain and TMPDS.
2. Your symptoms may have developed a psychological component (chronic pain often does).
3. You seem to have received care from several practitioners but not in a joined up fashion.

There is a special facial pain clinic at the Eastman dental hospital. They are in a position to approach your situation from all angles: dental, neuro-muscular, neurological, psychological. If you were my patient I would want you to be seen there.

In the mean time I'd really avoid any invasive dental treatment as I suspect it won't help. Obviously if you get some decay get it treated, and have your normal check ups and cleans, but no extractions or root canals, and ideally no crowns.

Have you had any orthodontic work? The reason I ask is tooth cracking from bite can be a result of the jaw being off (and obviously cause tmj disorder) and related pain. I know people who have had success with various retainers to move the teeth and realign te jaw and rest the tmj. It doesn't look pretty for a long time and you would never have known by just looking prior to treatment that there was a problem all facial and neck pain now gone

Was also going to recommend Eastman dental hospital in London (not sure where you are based) - they have some consultants there who are world leaders in their field.

My grandmother suffers from trigeminal neuralgia so I have a teeny tiny insight into that tricky world. She was on tegretol for many many years and recently switched to lyrica.

I hope you find something that helps you very soon.

Hi all!

Thanks so much for your replies. I didn't get any more notifications to say more had posted, so sorry I just got back here :)

CharleyDavidson I know these are very low, I was on higher doses, but really didn't feel much benefit and was so drowsy. I paid privately to see a facial pain specialist with Spire a month ago. He has said I should see someone that deals with neurology and migraines, and that I should continue to come off anything I was previously taking. So I don't know what to do now. I'm waiting for my referral to neurologist, but have my GP warned my I am likely to be looking at a 6month waiting list, so perhaps should think about private. I'm glad you found gabapentin helps. Do you get many side effects?

angryangryyoungwoman Good name! How did you get your oral surgeon referral? Glad you found something that helps. What symptoms did you have before? I have a mouth guard, which helps with teeth wear and tear, but I still have a very very sore face, clicky jaw, burning sensation etc.

Bonzo77 Thank you so much for you reply. Really appreciate all your advice. Not receiving care in a joined up fashion is the part that has been so stressful for me. Every time I see someone new it's like starting fresh, and mostly any advice I've received from a previous Dr has been different to the next. It's been so hard. I am living in Bristol, but would be happy to travel. I'm not sure how I would get a referral, I really don't think my dentist understands the nature of the pain, and how long this has been going on and when I try to explain I get the sense he thinks I'm a been a bit dramatic. Would Eastman take on someone like me, or would I need to be in the catchment area?

ridingthegravytrain No I haven't. Before my current NHS dentist, I went to a private practice to get a second opinion on one of my implants (one of the metal posts is very close to the root of the tooth next to it) and he said I would need braces to sort my bite out else I would continue in pain and eventually any dental work I had done would fail. When I took this to my NHS dentist he said it was nonsense, but if I wanted to give it a try it'd be £9000. This is when I was at my height of anxiety/stress/OCD about the whole situation, so was very upset about the thought of paying £9000 for braces.
It's something I would def' give a try if I had the money and a specialist said it would give me a good chance of lessening the pain. Thanks for your reply!

Raeray Thanks for your reply, hope your grandmother is getting some relief.

BigButtons I had my first Bowen session last night. Found the experience a bit quackers, but had a great practitioner, who has just been to a conference about TMJ so was very excited to be treating me. After coming out I felt pretty relaxed and my jaw was far less tight. The dull burn had also lessened by about 50%. I felt pretty great! The pain has come back, but feel some of the tension has left my upper body, so that's been great. I'm going back in two weeks. Thanks for your recommendation :)

charleydavidson Sorry I see you listed your side effects. The memory thing was very apparent for me and still is, some of that is down to stress I think. I always start sentences and forget what I was going to say.

clarencebean so glad Bowen has offered you some relief . Thanks for updating. I have found that it is a cumulative thing. One session won't be enough. It's amazing how parts of the body contact up pain-wise. When I was having Bowen I used to wonder what they hell they were touching my legs when it was my jaw that hurt! And why the hell did they keep leaving the room?!

OP I'm sure Eastman would see you. You dentist or gp can refer you. If you were my patient I'd refer you in a flash. I really think you need joined up care headed up by someone who can coordinate properly.

referral info

I was going to recommend the Eastman too. My dentist referred me, just about the best thing he did for me! I live 200 miles from London so it was a major journey but so worth it. They just know so much about this stuff, and it's reassuring to meet health professionals who do this all the time and don't look confused at your symptoms, or say you are the first case like this they have seen!

I have trigeminal neuropathic pain (not TN) following a bad root canal, and then a difficult extraction. 4 years on I'm on amitryptiline and finding it really effective. It was a nightmare for side effects for the first month or so. Now I have no side effects and very good pain relief, though not perfect.

I have big problems with visiting the dentist now because I get so anxious about it, despite a change to a lovely sympathetic dentist. And I worry about the future and what the drugs do to you in the long term. But on the whole things are so much better than I thought they would be 4 years ago. The Eastman definitely made the difference for me, especially the personal care and their determination to find something that worked for me.

Best wishes.

Hi Everyone

Thanks for replies. Again, didn't realise I had replies! Sorry

I had my second Bowen, some relief last night but back in pain this morning. Has made me more determined to figure this out. Just an hour of sweet relief has made me realise what 'normal' feels like.

Am also going to see neurologist (private-meh) next week.

allinall How long roughly was it before you were seen my Eastman? I'm glad you managed to get some relief with amitryptilline. I did try this about two years ago, but I was too drowsy all the time.

Many Thanks x

Hi, I think the wait was about eight weeks altogether. After I was referred I was sent a letter with an estimate of how long I'd have to wait. I think it was about 16 weeks. But in the end the appointment came much sooner. I had to ask them to change it so I could get there in time ( coming a long way on train! ) and they were very helpful with that.

Although it's a bit of a wait I think it's worth going for. And it doesn't mean you can't try other things in the meantime.