As a newby I am still learning all the delights this wonderful condition gives you. I have wandered through most of the discussions etc., but see little mention of some of the symptoms I am suffering from. Besides unbelievable jabs of pain in my upper and lower jaw on two specific teeth (one of which has been missing for a long time) I also have pain which causes the gland in my neck behind my jaw to become seemingly very tender. This pain is echoed by a pulsating pain in my temple which must be linked as it seems to pulse in ryhthm with the same pulse rate in my neck gland. At the same time the area above my ear, on the same side, seems more swollen and extremely tender although in reality I do not think it changes at all. I also seem to go deaf in the same ear and the pain moves from the lower jaw to the upper jaw and then localises on one area radiating outward with waves of the sharpest pain.
These occurences are infrequent (three or four a day) but last up to two hours or even more. I may just have gotten used to them and they are still there in between but at a lower level. Add to this nausea and intense pressure and pain in my jaw area up to my ear and you are getting close to the things I am experiencing.
Am I an enigma again or are there others like me? Cynicism rules ok!
I also have pain in my temple but not ear. My TN doesn’t affect my jaw very much, the pain is in my gum and around my mouth normally. Althoug I do feel shocks occasionally along jawbone or near my eye.
You’re not alone with the enigma tag. I dread going to the Doctors, I seem to walk away with more problems than I went in with… hohum…
The neck pain could well be part and parcel of TN, but it’s probably best not to assume, probably worthwhile checking with your doc.
Same thing with your ears, if it was just pain then it could be TN related as i believc there is a branch of the T nerve which loops back around the ear.
I have expereinced sharp stabbing pain in my ears, which could be a related nerve compression problem, but I also have tinnitus and deafness, and episodes of vertigo (spinning and loss of balance and nausea). This was diagnosed as meniere’s disease many moons ago. Since then I’ve been diagnosed as having hereditary neuropathy with pressure palsies, in which a gene deletion causes fragile myelin, very susceptible to compression damage. So I question the Meniere’s disease diagnosis, not that that makes me popular with my Doctors, because they have no answers. Confusion abounds.
What I’m trying to say is that your deafness probably needs to be checked out, there are many potential causes, some may even be treatable, it may not be TN, but when all else is discounted, then maybe all that’s left is TN.
This all sounds very familiar to me Greg. The only thing you mentioned that I haven’t experienced is the deafness and the swollen gland. All of your pain areas are the same as mine.
Hi Jon
Feel quite humble when I read your list of complaints… Mine has so far only been diagnosed as TN, but give them time and I am sure that my list will be as complex (and as incomprehensible) - not that I am jealous you understand, in a conversation I have enough trouble remembering my name when the pain is full on! When the prescriptions come out (bad pain previously for broken neck - motorbike accident) I love the expression - ‘Let’s try you on this for a few days!’ Oh wow! Could this be as a result of the leeches not kicking in, or the blood letting being a failure or worse still the sacrificial nurse being a complete flop?
Here’s to better times, medical names we understand and medicines without side effects worse than the original complaint. Greg
Jonathan Leonard said:
Hi Greg,
You’re not alone with the enigma tag. I dread going to the Doctors, I seem to walk away with more problems than I went in with… hohum… The neck pain could well be part and parcel of TN, but it’s probably best not to assume, probably worthwhile checking with your doc. Same thing with your ears, if it was just pain then it could be TN related as i believc there is a branch of the T nerve which loops back around the ear.
I have expereinced sharp stabbing pain in my ears, which could be a related nerve compression problem, but I also have tinnitus and deafness, and episodes of vertigo (spinning and loss of balance and nausea). This was diagnosed as meniere’s disease many moons ago. Since then I’ve been diagnosed as having hereditary neuropathy with pressure palsies, in which a gene deletion causes fragile myelin, very susceptible to compression damage. So I question the Meniere’s disease diagnosis, not that that makes me popular with my Doctors, because they have no answers. Confusion abounds.
What I’m trying to say is that your deafness probably needs to be checked out, there are many potential causes, some may even be treatable, it may not be TN, but when all else is discounted, then maybe all that’s left is TN.
I share some of your pain, Greg. I can relate to the pulsating pain in the temple, the intensely painful jabs in the teeth (which have been root-canaled to death, they have no nerves left!) and the ear pain. I don’t go deaf, but the ringing gets louder while outside noises are muffled… like I have cotton in that ear. Only on the right side, where all the TN fun occurs. I’ve had tinnitus for many years (result of working in noisy print shops). This ringing is more intense… like internal screaming. Maybe it’s my brain’s way of saying, "If you don’t scream, I will!"
As for the drugs… yeah… the docs say to keep taking something even if the side effects are unpleasant. Really? Doc? Would you keep taking something that caused hallucinations and amnesia to the point I couldn’t remember how to drive a car, or my dog’s name?? Oh yeah, it also didn’t help, but I guess I don’t remember being in pain along with anything else that happened while taking it (the drug was Topamax, also fondly known as “Dope-a-Max”).
Hang in there, Greg. Keep your sense of humor… you’re going to need it. Might be a good idea to lose the motorcycle, though, if you haven’t already!