RecipeForDisaster Posted February 2, 2021 Report Share Posted February 2, 2021 I can’t believe I might have another debilitating disease. Luckily I had a Boston neurologist already. He’s hoping it’s shingles with no rash, but the likelihood is low. He said something about small fiber neuropathy in this area as well. I’ve had twinges of this going back at least a couple of months, but I attributed it to my CPAP mask needing adjustment or tooth discomfort. I actually think I’ve had those twinges here and there for years. This time it’s severe and unrelenting. Awful, shifting pain of the right side of my face and jaw... if you touch certain parts, you get a lightning bolt of pain. It’s been bad for almost a week now... used to be just at night. Mostly, it’s like I have a broken jaw, in multiple places. Sometimes the roof of my mouth has the worst of the pain. If I close my back teeth together, the area underneath the teeth screams. I'm titrating up to a decent dose of carbamazepine, which makes me really tired, so is not great during the day. The pain is variable and unpredictable, so it’s hard to say if it’s helping. Tylenol, heat, ice, topical lidocaine, and allergy treatment haven’t helped. I’m also on Valtrex for a week in case it’s shingles. I think this is related due to my "irritated nerves" as the neurologist says. I would imagine this is all linked to my autonomic neuropathy and whatever else is wrong. If the Valtrex doesn’t help, I need additional imaging. I found other mentions of this on this forum, but they’re old. Does anyone else manage TN along with their dysautonomia these days? Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 2, 2021 Report Share Posted February 2, 2021 @RecipeForDisaster - I have nothing valuable to share regarding your added problems but to let you know how sorry I am that you are now dealing with such pain, on top of your already hard to bear dysautonomia. I so hope the neurologist will be able to help you. Hopefully it's "just" shingles ... I have several family members that struggled with ongoing nerve pain after a shingle infection and I know how unbearable it can be. Best wishes to you, and a hopefully fast recovery!!!!!!! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted February 2, 2021 Report Share Posted February 2, 2021 Sorry you are in so much pain . I have recently had swelling and pain in jaw bone but doesn’t sound anything like what you have got . Dr gave me antibiotics which worked . sending lots of sympathy and hugs , hope the meds work 🤞 Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 2, 2021 Author Report Share Posted February 2, 2021 Thanks. I don’t think this is an infection and neither did my PCP. No swelling of redness anywhere, it is in the upper and then lower jaw... roof of mouth and then near nose... "just" shingles would be great! At least it wouldn’t be permanent. Hopefully. I can’t take any pain meds, which makes it worse. I do read that they don’t work, though. I think the carbamazepine is helping, at high doses, but it comes with big time side effects. I’m kind of drunk appearing and feeling, for one thing. I’m having trouble finding words, my lips are numb, and my ears are ringing. I’ll take it for now! The hugs are appreciated! Quote Link to comment Share on other sites More sharing options...
angelloz Posted February 8, 2021 Report Share Posted February 8, 2021 I have this as well. I have a question. If you can manage to go to sleep does it go away then . So if you stir in the night do you notice it? With neuralgia and things like atypical tooth pain it is usually gone in the morning then returns rather quickly. Some days are worse than others. Amitriptyline helped me but I stopped it for some issues I was having. Ice at night does help me. It is miserable and having multiple things to deal with just doesn't seem fair. There are many medication combinations that can help. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 9, 2021 Author Report Share Posted February 9, 2021 It wakes me partway through the night, if I can manage to go to sleep. Even on a lot of carbamazepine. I think part of this is from my CPAP mask touching me, but it fits better than any other and is loose. I haven’t found that ice helps. But as far as my tooth pain, yes, if I sleep until 6am, it is GONE at that time and gets worse as the day goes on. It used to get bad at 7pmish and has gradually moved to 8-9am! The under - tooth tenderness is much better, though. I’m positive it’s not my teeth, partly due to that, and partly because it does move (even if the worst of it is always in one section of jaw) I'm a bit afraid of amitryptyline. I guess I’d take it if I had to. Quote Link to comment Share on other sites More sharing options...
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