I have been dealing with pain in my mouth, jaw, ear, and throat since Nov. 2011. So far I have seen my normal doctor, a neurologist, my dentist, and an ENT. My normal doctor couldn't say for certainty what was the issue is the neurologist says trigeminal neuralgia and the ENT says TMJ. The pain is horrible and is daily. Where my mouth hurts there isn't even a tooth there! So far I have been on tegretol, Neurontin, 800mg ib profufen, Tylenol, vicodin, Tylenol 3, and Norco's and acyclovir (in case it was shingles) not all at the same time. NOTHING works. Well, the ib proufen works but it only lasts maybe 2 hours and I can only take it every 12 hours. I sleep nightly on a heating pad which seems to help some. My jaw does not "click", no teeth are sore or painful, and I do not have trouble opening my mouth. Any suggestions or ideas for pain relief and possible permanent solutions?
I also must say I've had an mri and bloodwork done. I do not have MS (which my mother had and trigeminal neuralgia can be linked to) or any problems with my brain or blood. I do not get headaches with this pain, however it seems to bother my left eye. It's not that my eye hurts, it's almost like when the pain flares up it gets harder to see out of that one eye. I have been to an eye doctor, I do not need glasses.
Your neurologist is probably right, particularly if he did testing on you that led to the diagnosis. As to TMJ, problems in those joints is one of the causes of trigeminal neuralgia:
Have you had a TMJ panorex done to look at the bones of the joints? Did the ENT explain why he felt you had a TMJ issue?
Did your throat show no signs of acid reflux to the ENT specialist? Did he/she check your thyroid also?
The musculoskeletal parts involved with the TMJ can affect the neck and cause facial pain, and ear pain. But you say you have no trouble opening your mouth or clicking your jaw, which would make me wonder if you perhaps do not have displacement of the TMJ discs (MRI shows position of these). The fact that sleeping on a heating pad seems to help some at night would lead me to believe there may be a muscular component to your pain, which would tie in nicely to a clenching or grinding at night person.
Ibuprofen is considered the drug of choice (or at least it was over 8 years ago, according to the first oral and maxillofacial place I went to for my TMJ) for the TMJs- cyclic is how they had me taking it to knock down inflammation. They had me on 800 mg every 8 hours prescription medication for weeks, but that was my situation, not yours. Did the doctor give instructions re: you and ibuprofen?
But since you have such pain and are trying to be thorough, you likely still should think seriously about visiting either an oral and maxillofacial specialist who deals with TMJ or a TMJ specializing dentist. Do you clench or grind your teeth at night? (If you grind, your dentist should be able to perceive from the shaping of your teeth.) You don't necessarily have to have any sore teeth to have a clenching or grinding problem.
The ENT I went to said TMJ because of the symptoms, he said the pain wasn't in the correct places for trigeminal neuralgia. They did not check for acid reflux, but they did check my thyroid, which was fine. As far as grinding my teeth while I sleep I am unsure but my dentist has never made a remark. However, I do clench my teeth, generally when I'm angry or getting irritated. As for the MRI they didn't check my jaw, only my brain for signs of MS. I seen my doctor this past Thursday and he is sending me back to the ENT and a oral maxillofacial surgeon. Doc also said if they can't get something accomplished our next step is possibly finding a neurosurgeon to clip the left trigeminal nerve which is what they don't want to do but something has to give.
I hope the ENT will check your throat for signs of acid reflux, since that can cause soreness of throat (hopefully, it will be ruled out). And I hope the doctor reffering you is making sure it is an oral and maxillofacial specialist who specializes in TMJ disorders.
Living in pain is very challenging and I hope you get some relief soon!
Update, I've been to the E.R. a couple times over the weekend due to pain, they give me a shot of tordol (now they gave me an RX for it) and send me on my way. Well, I got a call from my doc today and they want to send me to Mayo Clinic in MN. That is approx. 7 hrs from my house! However, I hear they're really good neurologists up there, that true? Is me going that far worth it? Can they do something "special" that my doc's can't?
Mayo Clinic in MN I've heard is supposed to be one of the best places for TMJ surgery, should you wind up needing it. If you can afford the trip, I would think it definitely would be worth it! I'm sorry I didn't notice this before today- I clean up my watch list fairly frequently, eliminating many things more than a week past the last posting.
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