Atypical TN/ATN/TN2 triggered by TMJD/TMD?

Hi there,

It's recently become obvious to me that I have ATN. I count my blessings that the pain is only intermittent and never give up hope that I may one day be free of the disorder.

Like most of us, I experience variations in pain from day to day. Thankfully I have relatively pain free days but when I get the bad days it can send me to a dark place that it's a struggle to pull myself up out of, even though I know that they are the "flip side of the coin" and I must have bad days in order to know what it's like to have a good day (Trying to be philosophical here)

One thing intrigues me though.

I only developed the condition some time after an injury to my jaw. I got all the symptoms of TMJD first, like teeth not fitting together properly/clenching and then it was only months after that I woke up with the worst cheek pain ever.

Since this all began I've had some conservative treatment for my TMJD (Arthrocentesis/Joint Wash out), but it's hard to know if it's helped. My most recent MRI last month shows that my right TMJ is displaced and not reducing (Full report below).

Yawning seems to be one of the things that can set off stabbing pain in all divisions, and it just so happens that this can stress the TMJ, so I'm guessing there is a relationship between what my TMJ is doing and the Trigeminal Nerve.

Also I can wake up sometimes with really bad TN and it seems to be because my jaw has kind of deviated to one side because I'm a side sleeper and my jaw has literally fallen off the pillow.

I recently saw the top TMJ surgeon in the UK (He is one of the 10 consultants licensed to carry out jaw joint replacements here) and when I described my TN symptoms to him he was dismissive that this would have anything to do with my TMJD.

He said that just because my joint was showing displaced on the scan it didn't indicate a problem because lots of people have displacements in their jaw and don't even know about it.

He is recommending that proceed directly to Pain Management who'd give me Anticonvulsants to quieten the nerve.

I'm on Amitryptaline at the moment (100mg) which I know is helping and I can tolerate. However I'm wary of going down the route of further drugs due to the side effect profiles. Don't get me wrong, being pain free is my primary goal and if I have to take these other drugs I will force myself to endure the side effects, but I want to ensure that I've exhausted other avenues before doing so.

Thank you for taking the time to read this and may everybody's low-pain and pain-free days be numerous and long.

ATBFN,

Lukey.




My TMJ MRI reading for those who are interested:

The right is anteriorly displaced in the closed mouth position and there is no evidence of reduction in the open mouth position. There is limited anterior movement of the right mandibular condyle.

Normal appearance of the articular disc on the left. There is however limited anterior movement of the mandibular condyle. The appearances suggest a half open mouth position.

No joint effusion.

I truly believe I have TN2 caused by TMJD. I have stage 3 and 4 degeneration of the condyles with and without recapture of the disc. For the last year and a half since the diagnosis of "I cant' do anything for you except total joint replacement." I had some sort of facial pain. Mild at first, then this summer, the pain just kept increasing, to the point of tears. When I went to a great new doctor, she diagnosed the TN/TN2 and started me on the gabapentin (anti-seizure med). Once I got over the pain cycle and the foggy brain, I realized my TMJ felt someone better. I thought the entire time that it was all TMJ pain, but in reality it was the TN causing the pain. I was told that the TN is 1 mm from the TMJ so it would make sense that any dysfuntion of the joint to contribute to trigeminal neuralgia.

See the group tab above…read about all the topical helpers you can get to get more pain relief without as many pills…not sure which ones are in UK… ask any of your doctors to help you get one of these!

Thank you both for the replies.

@Momof3 it makes a lot more sense now, I knew there was definitely some relationship between the two, but never knew how close they were.

@Kc Dancer Kc I agree that topical is going to be the best way to go. I'd read about some things like Lidocaine and Capsaisin which I haven't tried yet.

The consultant said that he didn't think I'd respond to further treatment of the TM Joint at the moment so I've got to look purely down the pain management pathway for relief. With TMJD and TN It's a job to know which is the chicken and which is the egg.

I’m new to this site. Early in 2015 I was eating some mixed nuts when I bit into or tried cracking a Brazil Nut with my left molars…and BANG. I am sure I injured my left TMJ joint in doing so. It was mighty sore for a couple of months.

On Mothers Day, May 8 2015, I jolted straight out of bed with this ungodly pain. The electrical shocking wouldn’t let up. I couldn’t even open my mouth. I had to suck my dinner, what I could, through a straw. It felt like a terrible dental problem but when I went in as an emergency appointment with my dentist she couldn’t find anything wrong. She sent me to a specialist and they ended up pulling a molar that showed signs of a “pocket”, but before the novocaine wore off I knew I was still in trouble. After that the wife was able to find my symptoms in the medical books and we diagnosed the problem ourselves as a Trigeminal Nerve problem. We then saw the family doctor. She agreed and gave me Carbamazepine 200mg twice daily. Soon it was 400mg and then even more. It had lost it’s effectiveness.

Anyway, forward to this last December 2018, when tried a Ultrasonic Massager after finding a similar device developed by a firm in Israel. Only 3 months into treatment and I’m nearly pain free. I have posted my treatment lately to this site and created a YouTube video showing my treatment.

Anyway, I am sure that the TMJ joint injury eventually caused my TN. The moral of the story is don’t use your jaw as a vise for cracking nuts!! Yikes.