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Anyone with Trigeminal Neuralgia? Help!



Well-known member
Sep 6, 2017
I’m not convinced that I have TN, but my endodontist has referred me back to my regular doctor for the possibility. Back story: I’ve had three root canals, two fillings, and four crowns in the past year. After each time I’ve had work done, either the tooth will not settle down or other teeth suddenly become very painful. My treatment plan has jumped all over my mouth (major work done on #31, #2, #3, #19,#18, #11, #12) and changed monthly due to new pain. The last root canal I had was on tooth #18. Neither my dentist nor endo initially wanted to do it, thinking it only needed a crown and didn’t test like it needed a root canal. But given my recent history of pain in other teeth, the endodontist finally decided to treat it as a prophylactic measure. The procedure was horrible- I couldn’t get numb and had to have a catheter put in for an intraosseus injection (had probably 4-5 of them in addition to the nerve block). Other than the pain, it only took one visit and he said it went well. Fast forward and five months later it feels pressure like a vice around the tooth (except when I first wake up). I still just have the temporary filling in. I was given a short round of steroids, which didn’t help, and prescribed Soma (carisoprodal), which I was too scared to take. Nothing changed and now I’m scheduled for an expensive retreat. 3-D scan shows all roots filled to the tip, no fractures, and nothing missed). On the same side of my mouth, tooth #12 (had a composite filling in August) has been hurting since it was filled. Low/mid grade nearly constant pain, hurts with cold test, and slightly with pressure. Sometimes zings of electric shock/nerve pain. I also have pain/numbness feeling when it is at its worse radiating from the bottom molar to my ear, lower jaw, up to my cheek and to my eye. The endo isn’t sure retreating #18 and packing it with medicine will help, but he wants to do it. He doesn’t want to root canal #12 (#13-15 all have major old silver fillings but don’t test right for a root canal). He said it isn’t bad enough (despite my pain - pain is almost constant besides cold zing but the other tests don’t make it hurt worse really) and he suspects trigeminal neuralgia, not a tooth issue. I’m not convinced based on reading about TN. I have a lot of constant pain, not just flashes. Tylenol does NOTHING for the pain. Not even slightly. I am allergic to NSAIDS, so no ibuprofen for me. Haven’t tried opiods because they scare me. Does this sound like TN to anyone that has TN? I know acetaminophen (paracetamol, Tylenol) doesn’t work well for tooth pain, but shouldn’t it do something? I have seen two dentists and three endodontists over the past year and no one seems to offer real advice or relief. Can I demand root canals? I barely sleep from pain and eating is difficult. I even have trouble swallowing since having to eat on only one side of my mouth for months on end. I’m now so tired of pain, but have grown to have a new level of dental phobia since the treatments never stop nor help and even cause pain. If root canaling more teeth would make it stop, I would. But going to the dentist and endo nearly twice a month for months on end about this pain has made me look crazy I think. :( Help? I just want my life back! I wish I could go back in time and never have any of the work done because the pain has just never stopped.
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Anyone?? The pain is terrible and I couldn’t sleep last night. I’m afraid to call my dentist after hours and have him dismiss me since the endo he referred me to said it wasn’t bad enough for treatment in January. Should I go to an urgent care clinic on the medical side? Would they even do anything? I wish I could prescribe myself an antibiotic to see if that would bring relief. The pain and numbness is awful and getting worse. ?
Kns, I wished I had an useful advice for you or any experiences, which I do not have.. but want to comment anyway, at least to let you know that your post got read..

I'm so sorry to hear what you are going through right now and I can only imagine the pain and desperation you are in right now and also the regret of having started the treatment and the exhaustion about this all. What you described sounds so unbearable to me that my only wish would be that you do not stop looking for a health care professional that could help you somehow. Two dentists and three endodontists are a lot but you still haven't any answer to your suffering.

Not being able to sleep and to eat and going through constant unbearable pain is an absolute emergency state and there must be some doctor who knows what to do, at least how to stop the pain temporarily.

All the best wishes and I so much hope you can find some way to get help.
After competent dental evaluation to rule out teeth disease if the pain is nerve like and not precipitated by cold,heat, sweet then we consider neurology for diagnosis of trigeminal neuralgia. A good dentist can assist in this diagnosis by giving trial;s of various nerve blocks to see if that greatly decreases or eliminated the pain.
Thank you for your replies! It’s hard not to feel discouraged when in pain. I think the fact that I had a big composite filling on the top premolar and it has never felt right since then, along with some continual pain and sensitivity makes me think it’s an obvious tooth issue. So having the endodontist regularly be not convinced is disheartening. Maybe it’s just hard to know when the pain was coming and going for awhile. I’ve just spent a lot of money and still feel pain and don’t know what to do. I really want to take care of everything that I can and put this behind me. But keep getting setbacks and continued pain after procedures. Looking forward to when this is in the past (hopefully!). Hard to not think the dentists are rolling their eyes at me and my pain.
arrange with the office for you to call when in pain and be briefly seen immediately. If nothing else the doctor can inject local into an area to help identify where the pain is from or not from. A small expense.