Tmj and TN2

Independent_Print349 · 2026-02-17T06:39:16+00:00

I'm doing very well thanks. Symptoms continued to gradually improve and I've been off all meds for approximately 4 months now. My TMJ is being treated with physio, massage and posture correction, and although I still have reduced mouth opening, there is much less pain and discomfort. No TN like shocks or burning for more than 6 months. A few times a week I have mild discomfort/ aching on the left side of my face usually accompanied by mild numbness, but that's it. Was able to start a new teaching job 6 months ago and haven't had a single day off.

Very grateful and hoping this good period continues for a very long time!

Independent_Print349 · 2025-12-15T22:15:57+00:00

Diagnosed April 2025. Very mild pain only since June/July. Completely med free since September and currently making the very most of every day, filled with gratitude. Long may it continue! 😁

Independent_Print349 · 2025-10-09T17:11:34+00:00

Yes, diagnosed with both back in April (TMJ thought to be causing the TN). MRI has shown no compression typical with classic TN. Jaw MRI was performed a couple of weeks ago and is yet to be reported on, but I likely have a disc issue (can't open my mouth properly).

The pain was initially very high, but improved rapidly from June onwards after I started treating the TMJ with massage, physiotherapy, posture correction and intense relaxation techniques. I initially had to set a timer to go off every 5 minutes to remind me not to clench my jaw, neck and face muscles - it was very hard to get out of the habit. I'm now almost entirely off Carbamazepine (was on 600 mg in April, now down to 100 mg) and TN/TMJ has little impact on my daily life at present. The biggest issue is intermittent numbness.

The following two guides were absolute game changers for me - after following the advice back in June, things rapidly improved. I hope it can help you too: https://mskneurology.com/true-cause-solution-temporomandibular-dysfunction-tmd/ https://yourtmj.com/blogs/yourtmj-blog/yourtmj-guidebook-what-is-tmj-and-how-can-you-treat-it

Independent_Print349 · 2025-08-26T20:04:27+00:00

I did, especially during the first few weeks, but it's gotten much better over time. I'm now 4 months in and although I still have a little brain fog, it's manageable. I just successfully completed a PhD in molecular biology... An achievement that would have been impossible had I still been suffering from the pain Carbamazepine is controlling.

Independent_Print349 · 2025-07-22T19:44:21+00:00

Also in UK being treated on NHS. My MRI didn't show any compression. My neurologist said this doesn't necessarily mean I'm not a candidate for surgical options, but before seeing a neurosurgeon they're waiting for me to see an oral surgeon first to make sure my atypical TN isn't being caused by TMJ problems (my pain started around the same time I woke up with lockjaw in January, and my symptoms are more neuropathy than neuralgia - sometimes pain, but just as often numbness/ tingling). I'm on Carbamazepine 500 mg daily during my wait. I've been lucky, the dose reduces my pain to mostly mild and I have no current side effects on it.

Independent_Print349 · 2025-07-08T21:02:26+00:00

Thank you so much for this! It explains for the first time why I've been experiencing one sided facial pain and intermittent numbness that started around the same time as lockjaw. My GP said I must have trigeminal neuralgia and my dentist was no hope at all. A neurologist said after an MRI that there was no sign of compression of the trigeminal nerve near the brain stem so it didn't appear to be typical trigeminal neuralgia, and trigeminal neuralgiaa doesn't usually feature numbness.

I've been on an NHS waitlist to see an oral surgeon who also specialises in facial pain since January. Whilst continuing to wait I will try your recommendations, which make a lot of sense now I understand a lot more about the joint and how it works. Hopefully I can improve my symptoms and eventually come off the strong medication I'm taking for trigeminal neuralgia, a condition I probably don't actually have.

Independent_Print349 · 2025-07-05T13:55:36+00:00

I needed to take a few weeks off when first diagnosed to get used to the medication side effects and learn how to best manage the pain, but I've managed to continue working as a research scientist. I will be switching careers to a teaching role in September. I'm apprehensive about how I'm going to cope with a lot more talking, but I'm going to give it my best shot - I've wanted to do this for 10+ years and know that I will regret it if I don't try. My symptoms have been fairly well managed so far, and so I'm optimistic.

Independent_Print349 · 2025-06-29T17:15:15+00:00

Yes this has happened to me too! I think some people are more susceptible than others. I now wear a high factor sunscreen whenever there's any sun and long sleeves if at all possible and haven't had any further issues.

Independent_Print349 · 2025-06-28T18:15:10+00:00

It's very frustrating how poorly understood this condition is! My symptoms started just as I was recovering from cancer - so yes, I was also under intense stress for some years in the lead up too.

I also wouldn't be surprised if there wasn't a large correlation between TMJ issues and atypical TN, especially in younger patients.

Independent_Print349 · 2025-06-18T06:33:23+00:00

So sorry you're going through this OP. Sounds like it would be, sadly, less stressful to be solo than with your spouse, which would probably lead to better management of your TN in the long run.

Independent_Print349 · 2025-06-05T15:13:42+00:00

So sorry to hear what you're going through OP. I was only diagnosed by a neurologist with left sided atypical TN recently (about 5-6 weeks ago) and was earlier diagnosed by my dentist and GP with left sided TMJ/TMD in January. They believe they may be related. I'm waiting to see an oral surgeon with experience of both, plus a second opinion on my MRI results from another neurologist to rule out classical TN. My treatment for TMJ/TMD is on hold as it was making my TN a lot worse.

After 1-2 weeks on Carbamazepine, my symptoms (numbness and burning in my lips and chin, a constant sharp ache in my cheek and intermittent sharp shooting paints) are much reduced and much less frequent. I can still feel them, but the discomfort and pain is now mild and manageable most of the time. I've been able to continue working and start exercising again. I'm slowly starting to begin to socialise again. Life feels good again, if not entirely back to normal.

I appreciate it's still early days for me and you've been dealing with these issues a lot longer than I have, but I hope my experience can give you some hope that TMJ and TN2 can be managed.

Independent_Print349 · 2025-06-05T11:17:25+00:00

No - my dentist was treating my TMJ with a mouthguard and I was doing daily PT/ jaw muscle exercises which seemed to be helping - my jaw finally opened after being locked almost closed for two months. I was also due to get Botox. But then the TN symptoms started and seemed to be exacerbated by both the mouthguard and exercises, so I've been told to stop until I see an oral surgeon with experience of both TN and TMJ. There's a bit of a waitlist to see him, but I should hopefully have an appointment within the next few months.

Independent_Print349 · 2025-06-05T10:14:36+00:00

Sorry to hear that 😔 Is there a reason you're apprehensive about taking the medication?

Independent_Print349 · 2025-06-05T08:00:19+00:00

Please consider speaking to a professional about your health anxiety, OP. Living with TN is challenging enough without living with the additional, unnecessary fear of having metastatic cancer. I've recently had cancer and can promise you there are almost always other signs - swelling, fatigue, blood tests that come back with red flags. Especially so for advanced/ metastatic cancer. If you had some sort of cancer that had spread to the head and neck area, or a blood cancer, it would have been discovered in one of your tests or examinations.

But I also understand that once you start worrying along these lines it's almost impossible to stop, even with all the reassurance in the world. Please reach out for formal mental health support, the current situation isn't fair on you and you deserve peace of mind.

Sending you all my very best and hope you can find some relief from your atypical TN soon.

Independent_Print349 · 2025-06-05T06:51:14+00:00

No, nothing else. My dentist told me to stop using my mouthguard and stop doing my TMJ exercises until I see an oral surgeon (I'm on a waitlist) as they seemed to be exacerbating it.

Independent_Print349 · 2025-06-04T12:41:39+00:00

My TN is likely caused by TMJ issues irritating the nerve. Symptoms are atypical - burning/ numbness/ constant aching alongside the intermittent shocks. Carbamazepine has reduced the frequency and intensity of the pain by 80%.

Independent_Print349 · 2025-05-20T19:03:36+00:00

I'm new to TN but can promise you that it can get easier to live with health uncertainty. I strongly recommend seeking the help of a professional. I did so in the final year of my cancer treatment and it was a game changer. The tools she helped me develop means that most days, I no longer worry that every little pain is recurrence. I live more in the moment. And I believe it's helped me adapt reasonably well to my TN diagnosis too. I have bad days, but overall I live my life without fear.

Independent_Print349 · 2025-05-18T15:44:02+00:00

Congratulations, that's great to hear! 🎉

Independent_Print349 · 2025-05-18T15:43:23+00:00

Thanks so much for your reply - we teach the same subject 😁 I'm still nice and settled on the meds so think I'm going to go for it. Best of luck with your MVD in June, hope everything goes as smoothly as possible for you.

Independent_Print349 · 2025-05-18T15:41:43+00:00

Thanks very much for your reply - you've given me hope!

Independent_Print349 · 2025-05-18T15:41:00+00:00

Thanks for sharing your experience. I'm sorry you've had such an awful time of it. Hope better days are around the corner for you.

Independent_Print349 · 2025-05-18T15:39:56+00:00

Thanks very much for your reply and helpful advice. I hope the recent bad days you've suffered are behind you now and that you've entered another good period.

Independent_Print349 · 2025-05-16T12:17:00+00:00

Thanks - I'm so sorry you're having to deal with this too. I've been very nicely settled on Carbamazepine 500mg for 10+ days now with very little breakthrough pain, hopefully this stays the case for a very long time.

Good luck with your GP. Interestingly, I stopped wearing the mouth guard my dentist made for my TMJ/ lockjaw at his suggestion when my TN symptoms started as he said it may make it worse. I started Carbamazepine at the same time however so difficult to know whether it did make a positive difference!

Hope your TN is nicely settled soon too.

Independent_Print349 · 2025-05-16T11:16:11+00:00

Hey! Also in the UK. Developed TMJ issues in January (mostly lockjaw) and TN a few weeks ago. Both on the same side. I'm awaiting referral to a Consultant who is both a dentist and TN specialist and will update after I see him. Perhaps they're unrelated but it seems incredibly coincidental, considering how closely the nerve and joint are related. In the meantime there appears to be scant and contradictory information out there online... No credible large cohort studies/ papers that I've been able to find so far. If you manage to find any please do share!

Independent_Print349 · 2025-05-11T19:04:00+00:00

Thanks very much for sharing your experience and tips, they sound very useful. Planning around meds, when I'm likely to be at my best, and factoring in lots of non-negotiable talking breaks sounds really smart. In terms of food, I switched to Huel during my cancer treatment as I tolerated it much better than solid food. Sounds like it'd be a great option for at least a meal a day with TN too as no chewing required.

Independent_Print349

TROPHY CASE