Hi jslowboat, I too have pain in my ears, achy, like a slap to the side of he head, right greater than left and they feel plugged, sometimes I have mild vertigo. I also have a history of tmj, surgery in '86 to repair the soft tissue between that small tmj joint, it helped a terrible screwdriver pain in my ears but my facial pain persisted, then I was dx'd atypical facial pain. Next was a herniated disk at c5-c6, surgery did not help, I failed on a pain pump that did help with the pain for 4 years because of a big problem with this pump, but my facial pain went into remission for over 20 years. Everything from 2000 to 2009 was all lumbar, many surgeries but they unable to correct this, then a year ago the neck pain and facial pain came back, only recently for about 4 months now I am presenting with atypical trigeminal neuralgia type 2. When I get an attack it feels like I have been slapped hard on the right side of my face, ear and head, my jaw aches, chewing is difficult and as I said my ear aches and feels plugged. Drugs have not helped, failed on lyrica, cymbalta, and tegretol. I use moist heat for ear and jaw pain, also do an exercise of plugging my nose and blowing until I feel like I have popped my ears. The pressure really is annoying. Can't and won't take antihistimines for this, can't take them with some of the meds I am on. So, I can get it to calm down with moist heat and get ears to feel unplugged with this exercise. I think the facial dx is aggravating my tmj again, or maybe it is tmj aggravating another facial pain syndrome again, or it could be coming from my neck, I am now fused at 3 levels. If I have a lot of congestion, which is usually an allergy it feel worse in the ears.
You may have some tmj too, all of this gets all mixed in together, the neck, the jaw and then this facial pain can make your ears ache and the pain is awful. I did have a trauma to the right side of my face when I was very young, 27, my husband slapped me so hard my eardrum was almost ruptured, I could not hear out of that ear for weeks, soon after the tmj started. Now I am almost 57, and unsure if I have a lot of arthritis in the tmj joint as I am riddled with arthritis now throughout my entire spine, cervical and lumbar from all the surgeries and fusions. That ear pain sometimes feels like someone is pinching my ears as hard as they can, they burn and ache and then it all refers to my face and jaw, cheek and eye pain. It is a combination of muscle spasm and nerve pain. I can get the muscles to respond to moist heat but the facial pain persists....I am different on one aspect, my face pain feels cold. It does burn and ache, and yes I get the jolting spasms of pain to the cheek and eye, the jaw locks up sometimes. I won't even entertain seeing an oral surgeon unless I start getting deep screwdriver pain in my ears, then it is the joint again. My brother-in-law is a dentist and has advised me to be watchful as this thing could gradually tear that joint up again. I know we all present differently with this facial pain, I guess that is why they call it atypical. Typical TN, is almost always the same for sufferers and surgery is usually successful but they do not do surgery for atypical trigeminal neurolgia as the success rate is low and my neuro says I do not have vascular involvement. I am going to ask for an MRI on my next visit to definitely rule this out...I have read sometimes it can not be seen on these scans but is found sometimes when surgery is done.
If I were you, I would see an oral surgeon to rule out tmj, the ears are always effected with this, but beware surgery for that joint is not always successful and may not relieve all your pain. Good luck to you, I should get into to see an oral surgeon again but am reluctant knowing the outcome for anything invasive can make it worse.
I am doing the first line of action for this, stretching exercises for the neck and back, swimming, moist heat, pain meds, not a lot, low dose of percocet. The exercise for the ears I learned from an ENT, plug your nose and blow 3 or 4 times, then keep your nose plugged, plug your ears, blow 3 or 4 times and then pop them. I did respond to some of those other drugs but the side effects were very negative. I see my neuro again this month, there are other meds but oh my the side effects are just too much. Again, I don't know if I have been helpful but I do hope you find a way to get some relief. Sharon
jslowboat said:
I'm very glad I found this site. I was just diagnosed yesterday (yeah, I had a GREAT New Year) after 12 years of wondering what was wrong with me. The doctor was absolutely sure it was TN and I think he's right, but I wanted to ask if anyone has had the same experience I have had over the years. I think the reason several other doctors have dismissed TN is that it does not effect my face, just my ears. And I have experienced it on both sides (not at the same time). Is this the case for anyone else? I call them the "episodes". Luckily it only flares up a couple of times a year, for a couple of days usually, but the episodes have gotten a little longer and a lot more intense. I think Mimi described it perfectly when she said "I was down on my knees begging for mercy." Yep. Also, my episodes mostly follow a cold or flu, another reason doctors have brushed it off as sinus related. But I'm curious if anyone else has the pain just in the ear. Thank you for all the great information in this thread. Nice to meet you all.