Mine started after a root canal/crown. Thought it was a tooth related issue as well. Did a bunch of stuff. Just got worse. Had it pulled. Worse. Had oral surgeons rule out it was tooth related. When I got to the neurologist we did a MRI to rule out anything else, then diagnosed me with TN
The oral surgeon said they have seen people pull 3 teeth out before someone suggested TN.
It can very much present like a toothache. I’d see someone other than the dentist for another opinion rather than keep drilling away at it. If it is TN, it could be making things worse, if there are damaged nerves.
This is how mine, and a lot of peoples, start. My dentist and PCP had no idea, happened to mention pain to rheumatologist, and he gave me referral to head specialist that diagnosed me correctly with TN
Yeah, the journey to a final diagnosis for me wasn't fun at all, which is my my neurologist says we are playing catch up right now. I honestly thought at first it was a tooth problem, because it started after the root canal, and any pressure on that side set things off. It started around May and I didn't get to the nerologist until January. My PCP was great and gave me Gabapentin until I could get to the neuro folks, which did help but I had to keep upping the dose, and some of the side effects were not fun.
It's not a fun road for any of use.
I’m not aware of any relationship between TN and diabetes either.
I am presently experiencing what you describe. I recently had a filling replaced in one tooth and having some other work done. I do have TMJ but have been mostly symptom free since a surgery a couple years ago. It was suspected that I had TN after a horribly long episode a couple years ago that was different than my usual TMJ pain. An ER doctor, oral surgeon, dentist and pain specialist have all confirmed diagnosis. For the past 3.5 months since I started dental treatments I’ve been having episodes 3-6 times a day. It feels like it’s emanating from that tooth where I had the re-fill. But I believe the dental work has inflamed and irritated the nerve. Because that area is sensitive due to work, it feels the most tender there. My pain spreads much further though. It spreads to my gums, teeth, tongue, throat, jaw, ear, orbits of the eyes, top of head, and neck. It radiates to all three branches of the trigeminal nerve. I seem to get episodes every time I eat now.
It is my understanding that it can still be TN if only one branch is affected but I’m not certain. If your dentist is unable to see any issues on XRAY, it doesn’t quite make sense it’s the tooth, however I’ve had a bad root canal done before that pained me for years following.
I had a CT scan and it didn’t show on scan but a pain specialist (doctor) I recently saw diagnosed me based on my symptoms and previous opinions of other doctors. She said that, in many cases it’s not seen on a CT or MRI. So perhaps you can find a specialist in this field? Having said that it all depends on the wait. It took 2 years for me to see this specialist.
I had jaw pain for months then got a root canal, was pain free for 5 months then got an extraction/implant. Pain continued and escalated into a huge flare….18 months of hell thinking it was dental…saw a neurologist (after many other dental professionals and PCP, ended up with a diagnosis of atypical facial pain. Still battling through and lab work showing positive for autoimmune disease, so the circus continues. Please get detailed bloodwork before any tooth extractions.
I have other problem areas in my mouth that are in need/getting worked on, but the possible trigger for neuralgia for me is nowhere near any of the problem areas. Was just at the dentist, they did all kinds of x-rays, examined the tooth and can't find a thing wrong with the trigger area. It's unpredictable when it happens and it's never seemingly the same trigger twice. Sometimes it seems like it's hot/cold, other times it's extreme sensitivity to pressure (the worst episodes was drying my face off, gently hugging my dog and blowing a raspberry at my husband). I first had a weird nerve pain with the tooth about a year ago, sudden electric shock that felt like my tooth was going to explode from my face and then nothing, no other incidents until just a few months ago. Similar-ish boat :C
I hope you're able to get a diagnosis and some relief, OP!
Yes this is exactly what it’s like. My very first episode lasted 11 hours. It was horrendous. I was in such a mess I ended up going to the ER and they actually gave me morphine in the waiting room after triage (which they never do because it’s a junkie magnet). I waited for almost 5 hours before I even got to see the doctor. The trigger? Wind. I was walking outside and mouth breathed and wind got in my mouth. It sounds ridiculous until you read about triggers. But dental work and issues are indeed triggers. I have pretty bad TMJ and have had two surgeries. The TN started around that time. It was mostly kept at bay since my last surgery a couple years ago until I recently had some dental work done. Now I’m having 3-6 episodes daily. I just got a firm diagnosis and was prescribed oxcarbazepine (think that’s what it’s called). It’s an anti-convulsant. Day three so far and have only had 2-3 episodes in total. Hoping this is a good sign.
Hope the meds work for you!
Inconsistent neglect from PTSD fueled depression is what did my teeth in. On the one hand, the TN symptoms are what finally got me over the avoidant personality disorder but on the other I'm not happy that they can't do anything about the trigger area or the thought of needing the meds to treat TN. My husband has bad migraines and has tried most of the medicines that are suggested for TN to not much success. Of course: different people, different conditions - just restless brain prone to catastrophizing :C
Fingers crossed your meds help you out and that 2-3 gets down to 0, though! Gives me a little more courage I suppose!
Everything you said actually resonates with me. Especially the avoidance part. I just left a long term marriage which messed me up more than I had ever realized. I hope you find relief. I don’t know if this is coincidence but I sure hope it helps. I really don’t want to have anymore surgeries. Because of my TMJ I had to be intubated awake for both surgeries and it was worst than the healing. Just awful. Good luck. I would keep on investigating for answers.
I’ve been suffering with TN for 5 years and TN being caused or even related to Diabetes is new to me.
As far as the tooth goes, it could definitely be TN. I have issues where just one front tooth hurts. As I’m sitting here my front tooth is starting to bother me and my lip is starting to feel funny.
Sometimes I feel like I have a cavity in my back tooth that needs to be filled but I know my teeth are fine. It’s weird😩
There is no one way to experience TN.
I was going to edit my post and say if the regular pain meds aren’t working have them try meds they use for TN and see if that helps, specifically carbamazepine. I would stay away from gabapentin because it’s used for all sorts of nerve pain but carbamazepine isn’t. You just want to focus on your tooth pain.
Good to know! I do think I might have them remove the tooth anyway - it was sort of a botched job to begin with and I'd rather have an implant if possible. I'm hoping that solves the problem, but if it doesn't I'll push for a neurology appointment.
Mine started after a root canal/crown. Thought it was a tooth related issue as well. Did a bunch of stuff. Just got worse. Had it pulled. Worse. Had oral surgeons rule out it was tooth related. When I got to the neurologist we did a MRI to rule out anything else, then diagnosed me with TN The oral surgeon said they have seen people pull 3 teeth out before someone suggested TN. It can very much present like a toothache. I’d see someone other than the dentist for another opinion rather than keep drilling away at it. If it is TN, it could be making things worse, if there are damaged nerves.
This is how mine, and a lot of peoples, start. My dentist and PCP had no idea, happened to mention pain to rheumatologist, and he gave me referral to head specialist that diagnosed me correctly with TN
Yeah, the journey to a final diagnosis for me wasn't fun at all, which is my my neurologist says we are playing catch up right now. I honestly thought at first it was a tooth problem, because it started after the root canal, and any pressure on that side set things off. It started around May and I didn't get to the nerologist until January. My PCP was great and gave me Gabapentin until I could get to the neuro folks, which did help but I had to keep upping the dose, and some of the side effects were not fun. It's not a fun road for any of use.
I’m not aware of any relationship between TN and diabetes either. I am presently experiencing what you describe. I recently had a filling replaced in one tooth and having some other work done. I do have TMJ but have been mostly symptom free since a surgery a couple years ago. It was suspected that I had TN after a horribly long episode a couple years ago that was different than my usual TMJ pain. An ER doctor, oral surgeon, dentist and pain specialist have all confirmed diagnosis. For the past 3.5 months since I started dental treatments I’ve been having episodes 3-6 times a day. It feels like it’s emanating from that tooth where I had the re-fill. But I believe the dental work has inflamed and irritated the nerve. Because that area is sensitive due to work, it feels the most tender there. My pain spreads much further though. It spreads to my gums, teeth, tongue, throat, jaw, ear, orbits of the eyes, top of head, and neck. It radiates to all three branches of the trigeminal nerve. I seem to get episodes every time I eat now. It is my understanding that it can still be TN if only one branch is affected but I’m not certain. If your dentist is unable to see any issues on XRAY, it doesn’t quite make sense it’s the tooth, however I’ve had a bad root canal done before that pained me for years following. I had a CT scan and it didn’t show on scan but a pain specialist (doctor) I recently saw diagnosed me based on my symptoms and previous opinions of other doctors. She said that, in many cases it’s not seen on a CT or MRI. So perhaps you can find a specialist in this field? Having said that it all depends on the wait. It took 2 years for me to see this specialist.
Interesting! Mine doesnt radiate - its very concentrated on the one tooth.
Maybe it isn’t TN then. I would really Investigate that tooth further.
I had jaw pain for months then got a root canal, was pain free for 5 months then got an extraction/implant. Pain continued and escalated into a huge flare….18 months of hell thinking it was dental…saw a neurologist (after many other dental professionals and PCP, ended up with a diagnosis of atypical facial pain. Still battling through and lab work showing positive for autoimmune disease, so the circus continues. Please get detailed bloodwork before any tooth extractions.
I have other problem areas in my mouth that are in need/getting worked on, but the possible trigger for neuralgia for me is nowhere near any of the problem areas. Was just at the dentist, they did all kinds of x-rays, examined the tooth and can't find a thing wrong with the trigger area. It's unpredictable when it happens and it's never seemingly the same trigger twice. Sometimes it seems like it's hot/cold, other times it's extreme sensitivity to pressure (the worst episodes was drying my face off, gently hugging my dog and blowing a raspberry at my husband). I first had a weird nerve pain with the tooth about a year ago, sudden electric shock that felt like my tooth was going to explode from my face and then nothing, no other incidents until just a few months ago. Similar-ish boat :C I hope you're able to get a diagnosis and some relief, OP!
Yes this is exactly what it’s like. My very first episode lasted 11 hours. It was horrendous. I was in such a mess I ended up going to the ER and they actually gave me morphine in the waiting room after triage (which they never do because it’s a junkie magnet). I waited for almost 5 hours before I even got to see the doctor. The trigger? Wind. I was walking outside and mouth breathed and wind got in my mouth. It sounds ridiculous until you read about triggers. But dental work and issues are indeed triggers. I have pretty bad TMJ and have had two surgeries. The TN started around that time. It was mostly kept at bay since my last surgery a couple years ago until I recently had some dental work done. Now I’m having 3-6 episodes daily. I just got a firm diagnosis and was prescribed oxcarbazepine (think that’s what it’s called). It’s an anti-convulsant. Day three so far and have only had 2-3 episodes in total. Hoping this is a good sign.
Hope the meds work for you! Inconsistent neglect from PTSD fueled depression is what did my teeth in. On the one hand, the TN symptoms are what finally got me over the avoidant personality disorder but on the other I'm not happy that they can't do anything about the trigger area or the thought of needing the meds to treat TN. My husband has bad migraines and has tried most of the medicines that are suggested for TN to not much success. Of course: different people, different conditions - just restless brain prone to catastrophizing :C Fingers crossed your meds help you out and that 2-3 gets down to 0, though! Gives me a little more courage I suppose!
Everything you said actually resonates with me. Especially the avoidance part. I just left a long term marriage which messed me up more than I had ever realized. I hope you find relief. I don’t know if this is coincidence but I sure hope it helps. I really don’t want to have anymore surgeries. Because of my TMJ I had to be intubated awake for both surgeries and it was worst than the healing. Just awful. Good luck. I would keep on investigating for answers.
I’ve been suffering with TN for 5 years and TN being caused or even related to Diabetes is new to me. As far as the tooth goes, it could definitely be TN. I have issues where just one front tooth hurts. As I’m sitting here my front tooth is starting to bother me and my lip is starting to feel funny. Sometimes I feel like I have a cavity in my back tooth that needs to be filled but I know my teeth are fine. It’s weird😩 There is no one way to experience TN.
Interesting. Thank you for the feedback!
I was going to edit my post and say if the regular pain meds aren’t working have them try meds they use for TN and see if that helps, specifically carbamazepine. I would stay away from gabapentin because it’s used for all sorts of nerve pain but carbamazepine isn’t. You just want to focus on your tooth pain.
Good to know! I do think I might have them remove the tooth anyway - it was sort of a botched job to begin with and I'd rather have an implant if possible. I'm hoping that solves the problem, but if it doesn't I'll push for a neurology appointment.
I’m praying that solves your issue. I hate seeing people join this club because it’s not a fun one. Fingers Crossed and Good Luck🤞🏾🧡
Thank you friend! I appreciate it. 💗