TMJ and Trigeminal neuralgia (TN) have a lot in common. I think what’s missing from the information I found on Wikipedia (and via Google) is that TMJ can cause TN.
Trigeminal neuralgia… is a neuropathic disorder characterized by episodes of intense pain in the face, originating from the trigeminal nerve… It has been described as among the most painful conditions known to humankind. It is estimated that 1 in 15,000 or 20,000 people suffer from TN, although the actual figure may be significantly higher due to frequent misdiagnosis. In most cases, TN symptoms begin appearing more frequently over the age of 50, although there have been cases with patients being as young as three years of age. It is more common in females than males…
TMJ is also more common in women than men. What has confused TMJ researchers is that some people have TMJ but don’t have that much pain or any pain at all, while others have intense pain. Since the TN nerves are part of the jaw joints, it just makes sense that these nerves can be a part of TMJ pain.
This disorder is characterized by episodes of intense facial pain that last from a few seconds to several minutes or hours… To describe the pain sensation, patients may describe a trigger area on the face so sensitive that touching or even air currents can trigger an episode; however, in many patients the pain is generated spontaneously without any apparent stimulation. It affects lifestyle as it can be triggered by common activities such as eating, talking, shaving and brushing teeth. Wind, high pitched sounds, loud noises such as concerts or crowds, chewing, and talking can aggravate the condition in many patients. The attacks are said by those affected to feel like stabbing electric shocks, burning, pressing, crushing, exploding or shooting pain that becomes intractable…
Since I describe my facial and head pain as constant and not episodic, I didn’t think that I suffered from TN. But since I was forced to stop treatment with prescription medications, I have developed pain storms that are more episodic in nature. The pain flares don’t last for minutes or hours, they last for days, and the triggers are very similar.
When pain levels are constant and at such high levels, it’s very difficult to differentiate between joint/bone pain and nerve pain, so patients have a hard time relating this kind of information to doctors. I think TMJ pain starts out as joint/bone pain, but can easily develop into nerve pain.
As with many conditions without clear physical or laboratory diagnosis, TN is sometimes misdiagnosed. A TN sufferer will sometimes seek the help of numerous clinicians before a firm diagnosis is made.
The only way to determine problems with the jaw joints is by MRI, but even that test doesn’t always accurately diagnose TMJ. Since dentists diagnose TMJ through things like clicking and range of motion in the jaw, and symptoms like headaches and facial pain, MRIs are not usually performed. Plus, MRIs are expensive and not covered by insurance for TMJ, especially if ordered by a dentist.
There is evidence that points towards the need to quickly treat and diagnose TN. It is thought that the longer a patient suffers from TN, the harder it may be to reverse the neural pathways associated with the pain.
This is true with just about all pain, which usually starts out as acute and then develops into chronic and intractable pain. Once pain is chronic, there is no going back, which is why treating pain early is so very important. Doctors used to know this, but the drug war has caused doctors to be more cautionary when treating pain, including refusing to treat it.
The differential diagnosis includes temporomandibular disorder. Since triggering may be caused by movements of the tongue or facial muscles, TN must be differentiated from masticatory pain that has the clinical characteristics of deep somatic rather than neuropathic pain. Masticatory pain will not be arrested by a conventional mandibular local anesthetic block.
To diagnose my TMJ, the dentist performed nerve blocks which did not stop the pain. This test differentiated dental (tooth) pain from jaw pain. But perhaps my diagnosis should have also included TN. Not that it matters, as there are very few treatments for both TMJ and TN. And a lot of those treatments just make the conditions worse, especially surgery. You cannot cut into facial nerves and expect the trauma to not make the pain worse. In fact, my TMJ surgery might have actually caused the TN.
8 thoughts on “TMJ and Trigeminal Neuralgia”
Great post! This makes perfect sense and I fully agree with your theory. Those are some of the reasons why I have trouble with stating an actual Dx when I talk about my facial pain. I have never had the typical, intense, intermittent, electrical shock episodes of pain that are usually experienced by TN1 patients. I think that is part of the reason for my ever changing diagnoses. My neurologist doesn’t know much about TN2 (Atypical TN) but that condition describes my symptoms perfectly and was eventually added to my Dx. Not only do I believe that TMJ can cause TN but I also believe that dental procedures can cause it. My pain has ALWAYS felt like a terrible toothache or abscessed tooth and still does but apparently that is common with TMJ, TN, and ATN. I can’t help but suspect that a botched dental procedure caused my condition. I’ve read hundreds of stories from other people who had it happen. I guess it doesn’t matter much either way because knowing for sure won’t change anything or cure me.
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IMO, TMJ and TN can exist in the same person, but they are not necessarily linked. In other words, if I have TMJ and I also have TN, one is not necessarily caused by the other.
In your case, since you had the TMJ surgery, you probably had a very tight neural foramen, and the trauma from the surgery might actually have kicked off an RSD-type situation.
The common wisdom is that TN is basically zoster of the facial nerve. Since zoster is caused by the chickenpox virus, which is in the herpes virus family, the syndrome falls into the category of postherpetic neuralgia, known to be so painful that there is a really shocking suicide rate among sufferers.
I have treated a number of TN sufferers with medical acupuncture and had good success. It’s very gratifying both for me and my happy patients! These are people for whom neurontin and nerve blocks did nothing.
I really feel for you. It’s a terrible, terrible condition.
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Because of the inflammation episodes, maybe CRPS/RSD would be a better fit than TN, but I’ve never read about it happening in the face. Usually it’s a hand or foot (arm or leg) that’s affected. But the TN diagnosis is supported by my eczema and a family history of shingles. I suppose it could be all three… wouldn’t that make me the luckiest person on Earth? 🙂
I tried acupuncture. On one side, there was no effect, and on the other side, it burned like a mofo. I’m sure every acupuncturist is different, just like every dentist who fit me with a mouth splint had a different idea of where the jaw joint should be positioned.
So, you’re not going to be driving through Albuquerque?
Well…I had planned to come that way, but ended up riding 300 miles in the cab of a gigantic tow truck with the new (now lost) love of my life: a 6 foot tall woman tow truck driver with a waist length blonde pony tail, highlighted in axle grease! Man oh man…no, woman oh woman, we had a fine time talking about guy stuff. Woot! And I got to sit in the middle, with Atina holding down the shotgun seat as always. I must have died temporarily and been picked up by this greasy angel, who set me down in Tucson with many a sigh and backward glance. I am going to have to go looking for her.
So yeah, now I’m in Tucson hanging with an old boyfriend who is now a good buddy, which is much better than a boyfriend at my age….I wish that greasy blond Athena would come back and tow me away again…😉
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I was diagnosed with TMJ when I was about 20 I think. At that time I had the popping, clicking, pain in the joint, an inability to open my mouth fully. Sometimes my jaw would lock up and I wouldn’t even be able to get a spoon inside, the locking could last for days at a time. Sometimes I would get nerve pain in my face as well. My problems went down to my neck and shoulders and I think may have actually originated in an accident I had with a racing go cart when I was 10. When I was in high school I woke up one day unable to turn my head altogether, it only lasted 3 days or so and was alleviated by muscle relaxants but the doctor was actually worried I might become paralyzed and recommended physical therapy we couldn’t afford. Anyway that is how it all started. Since I have been working a lot with my posture, I have exercises I do twice daily. I have been working to correct imbalances in my muscles, to strengthen my joints. I have been working on relaxation techniques. I have been working on building up my stabilizer muscles. I practice yoga everyday it has been life-saver and I mean that. I can now lift my arms above my head which I actually couldn’t do before. I haven’t had a jaw locking episode for many many years. Actually I don’t notice my TMJ much anymore. I can eat apples and pears even! I still have trouble with caramels sometimes which is a shame because I love caramels. The pinched nerves in my shoulder are much less frequent. I have to work on it every single day which is challenging but my pain levels are way down and my mobility and strength are up. I still hold all my tension in my neck and shoulders and require massage when it builds up to a certain point but all the work I have had to do on self-rehabilitation has been worth it.
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TMJ is both hard to diagnose and to treat. There’s so much referred pain that it’s hard to pinpoint the origin of the pain. I had massive (and unnecessary) dental work done in the year it took for me to obtain a diagnosis of TMJ. But other conditions like spinal stenosis have muddied my pain picture. Is this pain caused by TMJ or the degenerative disk disease in my neck? At this point, it doesn’t really matter. Pain is pain.
Thanks for sharing your success story. I read so few of them that it really makes my day to know you’re able to manage your TMJ. (Hey, that rhymes.) 🙂
It does! Well I am certainly not going to give up, the body is truly miraculous and has an amazing capacity to heal itself.
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