To Be At Crisis Point With TMJ Pain

[BeeDaisy]

I am really struggling. I’ve been to the dental hospital numerous times to see the TMJ consultant and they just give me a mouth guard and send me on my way. It doesn’t nothing but cause even more pain.

The doctor just throws medication at me all of which I’m struggling with. I came off Amytriplyine because I couldn’t cope with the side effects. I’ve now had to do the same with Nortyriptyline.

I take cocodamol and naproxen daily. I try and take breaks at the weekend and switch to ibruprofen and anadin. Nothing fully gets rid of the pain.

I went to see an osteopath and felt relief for two hours afterwards. Unfortunately after this I was in agony much more than normal for 2 days and still counting.

I just don’t know what to do with myself anymore. I’m so fed up and sad about it all. Not a moment goes by when I’m not in pain. My sleep is disturbed.

I’ve been reading up on Botox and other private things but I’m worried I will pay all that money and it won’t do anything.

I am also worried about the damage all the painkillers could be doing to my body.

I also want dental treatment to make my front teeth look nice but no one will touch me whilst I’m in so much pain with TMJ.

Has anyone found a long term solution please? Or got rid of most of the pain?

It is really affecting my quality of life at this point.

I don’t know where to go from here.

I has Botox in my jaw. Im not the UK and it was covered by health insurance but it was the equivalent of about 800 GBP. It basically cured my pain by 100%
I’m now nearly 5 months on and it’s wearing off so the pain is slowly returning. I’m going to wait another month and then I’ll definitely go back for more

Acupuncture can be absolutely brilliant for TMJ. Well worth a go.

Thanks I’ll look into both. It’s the cost and the regular need for it that worries me. But probably way better than how I’m feeling now.

Have you had some bloods done for things like lupus / autoimmune issues? TMJ is quite common in people with lupus, it’s all inflammation related. There are disease modifying drugs you can take for lupus related inflammation but you’d need a referral to rheumatology to investigate further.

If you’re anywhere near Leeds, the dental hospital has specialist CBT for chronic TMJ pain management. I think it’s NHS

I'm the same. I've been grinding my teeth all my life and buggered up my jaw. It sticks all the time, and I have to unlock it. I also take Cocodamol daily. The NHS offered to drain my jaw but said that it can often make it worse. I think the only solution would be to go private, which I can't afford, as my dentist told me there's a private dentist I could go to who specialises in TMJ issues.
A cold compress helps.

I feel your pain. I was under an oral maxillo consultant for a long time. I used to have Botox on the NHS but they no longer fund it. Botox comes with its own problems, it can lead to bone loss so it isn’t a long-term solution unfortunately. It does help though. I had it privately at a dentist a couple of times and it was around £270, but that was years ago so it might have increased.

I’ve massively fucked up one of my lower molars through grinding. I haven’t been able to chew on that side for a year now. I’ve been told it’s most likely cracked and was advised to have it removed, but I haven’t done anything about it yet as it doesn’t cause me pain unless I’m using it.

After that I managed to stop grinding and clenching, partly because of that tooth being painful but also the horror at the thought of fucking up more. Unfortunately I automatically developed another oral habit - running my tongue over the my bottom teeth - so the TMJ pain is back and I have ulcers on my tongue 🙄

I find massage helpful, really digging into the masseter muscles with a knuckle and then release and repeat.

Do you know why you clench/grind?

My sister suffered dreadfully with TMJ. She had botox and it did help, more than anything else that she tried upto that point.

The thing that made the biggest difference though was having the impacted wisdom tooth removed on that side. Have you anything like that going on? It was partially erupted and partially impacted. Removing it was difficult. But the relief, I don't think she's had an episode since. The botox gave her 9 months of relief. A private dentist did it for her. I took her and she was in agony. She could barely open her mouth to let the dentist look. So she gave her the botox. And within a day she could open her mouth.

You poor thing. My sister said that alternating ice and heat on the muscle gave her the best relief when she was suffering.

I’m trying Botox tomorrow. Wish me luck!

Good luck! Please do let me know how it goes. I am in a similar position. Saw a world renowned dentist privately who specialises in TMJ. It cost almost £2k (my parents helped thankfully) but the device he made is so awful I can't sleep with it! Waste of time and money. I feel like Botox could be the answer 🙏🏻 Hope yours goes well!

I’ve had a couple of custom made splints but I can’t sleep with either of them in, they just make me clench harder. And when I remove it in the morning my teeth feel like they’re going to fall out.

@MostlyGhostly have you had any experience of this CBT or similar? I’m quite wary of NHS CBT programmes for pain and chronic illness after a bad experience (think focus was on faulty illness beliefs rather than coping with the reality of the illness.) This was a while back though so things might have improved

The only thing that helps my TMJ is Botox - after around 5/6 months it does start to wear off and I need it redone but the cost is worth the relief!

i have masseter botox for TMJ it does help

Thanks everyone. I’m there around lunch time so I’ll report back and let you know how it goes. It’s expensive but they said it lasts 3 to 4 months.

OP has your dentist ir anyone else done a full OPG xray and looked at the TMJ joint? Is it on one side or both? Do you have stiffness/ limited opening? Any cruchy/ grindy noises when opening?
I had issues and already had a night guard etc. I had tried botox which did not solve the underlying problem. My dentist referred me to a dentist with a special interest in jaw issues. He did an OPG Xray and told me I have severe arthritis in the TMJ joint on one side. He has done steroid injections into the joint a couple of times, which don’t ultimately fix the issue but massively reduce pain and inflammation for months. I don’t really take painkillers because I don’t want to take them long term. Incidentally he said to me due to the severe joint damage to never let someone like an osteopath near it.

Botox will reduce the power in your jaw muscles so will take the strain off the joint by reducing clenching/ grinding but if the joint is arthrtic botox won’t help the pain/ inflammation. The specialist dentist I see is not that into botox for this issue.

I've just emailed my dentist about my wisdom tooth that hasn't come in. Thanks for this!

I think they said the disc is too far forward on one side which limits opening. My jaws default position is the clench position. I have to work hard to be aware and constantly move it from that position.

All they seem prepared to do though is give me a mouth guard which I just cannot keep in because the pain becomes unbearable.

Freefields I saw an osteopath last weekend and felt relief for about two hours after but still had pain. After that I have days of much more horrendous pain so I don’t think it helped any at all.

clove oil directly on the gum, burns like hell but does provide temporary relief.

Has it been xrayed OP? I do think that’s really important. How did you get on with the botox?

My mum gets both botox and uses and osteopath to treat her TMJ. It's botox once every 3-4 months and the osteopath every 2 weeks in-between. She's not cured but she's a different woman than she was this time last year.

Botox almost got rid of mine, was amazing for my face not to hurt.

When I still managed to get TMJ despite the Botox massage helped a lot.

I’m sure I’ve only had X-rays off my teeth none of my jaw.
Botox she said it may or may not work as she expected my lower muscles to be tougher which is a sign of teeth clenching.
I went ahead anyway as I feel I need to try anything at this point.
I’ve not had as much pain today but I don’t know if that’s just coincidence.

I also started taking nortrypline again a few evenings ago too so that may be having an effect.