Hi. So I have been seeing a Neurologist for over a year. My very first visit I went over my left sided facial pain & mentioned the procedures I have had. She put me on Duloxetine. I was on a couple of others low dose but switched to this 40 mg. I last saw her last Oct. and I had an updated appt yesterday. Left frustrated. Felt stupid with how she treated me. The first visit I explained everything. The other visits I talked about my upper jaw/nose pain. This visit I was inquiring about my lower jaw pain. I said the main nerve on the bottom is very tender… I get pain under the jaw left side like under the back teeth. It flares up & can be ok as long as I don’t touch that area. If you put your finger on the inside by the root on a certain tooth it feels very tender. For 2 years I went to dental drs over my jaw & nothing has shown on X-ray. Well last Oct. I had a root canal on the molar that has the sensitivity at the root. It’s like on the root but more next to it the pain when touching. Recently had an apicio to remove the root tip because the endo said he saw inflammation & that could be irritating the nerve & there could be something more going on so I went ahead & did the procedure. So of course it didn’t solve anything & an extra sensitive. Yippee! So when I saw the Neurologist I was asking about that nerve & if it could be causing my pain. She said anything in mouth the oral drs would know not her. And that any upping in meds a face pain specialist I should be dealing with. I felt stupid because I thought a neurologist can help answer questions about nerves in your face. The specialists I see always tell me to deal with a neurologist but she totally is telling me to deal with dental people. I have seen a orofacial pain dr at a dental school. He couldn’t even tell me why it hurts in the area of the nerve in the jaw. Again if you touch that area it hurts! It feels like a certain localized area of my left sided jaw. The tooth in front of this molar is a virgin tooth and the tooth behind it has a crown because I cracked it years ago. Nothing showing up on X-ray… yet… if it’s something. IN recent blogs on here that I wrote on the left side I have a minor swelling to the jaw which is very very minor. It can get itchy. My smile is a tad off because of it minor.
I’m in agreement with Lee. I too have had to switch neurologists. It is frustrating when they look down on you like you’re an idiot or are dismissive of your symptoms. But I would also see if you might have TMD more commonly known as TMJ as disorder in the temporomandibular joint if your jaw, as well as ATN. I have both and the TMD/TMJ affects the bottom of my left jaw including pain that affects an area right under a tooth. For me it tends to be caused by grinding my teeth and a misalignment of my jaw. It is very frustrating to have multiple issues with facial pain but I would suggest at least ruling TMJ/TMD out. TMJ/TMD really is not in the numerologist preview. Where as my TMJ/TMD affects my lower jaw area on my left side, my ATN affects the top part of my facial area. I get the ice pick feeling above my eye when my ATN is really hurting, continual burning pain down my left nose area that never goes away, and then aching pain right under the my left eye when my ATN is really hurting. However, none of that is not specific to my teeth and jaw area. I know other people do have the dental type pain and some TMJ/TMD have issues with the top of the jaw. Your your primary care doctor or a dentist in the area that specializes in TMJ/TMD should be able to at least rule it out.
Thank you for your response Thats reassuring you have similar symptoms with the lower jaw. This one tooth that I had work on hoping it would solve the problem… had a crack in it. I remember when I would eat a chip or something hard & it hit the tooth the wrong way… ouch! I let it go a few months then went to endodontist & he thought the crack was just a surface crack & said to crown it. I didn’t… I was too busy dealing with my upper jaw issues that I let it go. I then got more opinions & no one saw anything. Then my new dentist & the endodontist thought whatever inflammation/possible infection was getting into the nerve. So that’s the only reason why I did those procedures on that molar. So the root tip surgery was unsuccessful & made things worse! I asked the endo when he went inside if he saw any cracks because I fear there is a micro crack & wondering if this tooth has to get extracted. I can chew on the tooth fine however if I eat something very hard & it hits that area the wrong way it is sensitive so not sure if that’s just how it will be since it has a crack. It’s crowned now. Anyway- we all want answers. As for TMJ/TMD- I did get a dental scan done by a TMJ dr & he showed me my left jaw joint is almost bone on bone. My left side is more degenerated than my right. My right side I get all the cracks & popping noises when I open my mouth & have had ear pain on the right side yet my left is the worst side & the only area of pain is my lower left sided jaw like it flares under a tooth sometimes I think it’s coming from my extracted wisdom tooth that was done years ago. Like I can feel it back there. The localized jaw pain I get in the gums on the inside by the tooth I had work done. It’s so weird I hate it. I have never had tooth pain just pain under the left side & sometimes a tooth on my upper left side which may or not be sinus related.
I totally agree with you that facial pain is extremely life-changing. You are correct that my lower jaw, which is where my TMJ is, has pain right under my molar which has been crowned. However, unlike my right side which also has a tooth crowned in the same place and had a root canal to deal with the extreme pain, the pain under my left molar is not continual but sporadically comes and stays for a while and then will recede for a time. I have figured out that it is truly connected to my TMJ and what is going on there with the left side. I have periods of time with no aches but whenever I start to get stressed and clinch my teeth the pain reoccurs. TMJ certainly does change how I attempt to not clinch my teeth. I also try very hard to D stress which goes along with my habits of clenching those teeth. It is very frustrating when I’m eating something soft or something hard and all the sudden the TMJ is activated. ATN is way past frustrating for me just as much as the TMJ portion. Dealing with weather changes, and uptick in pain in the evening as I finally fatigue out of pushing the pain aside makes ATN even more miserable. I feel for you. I shall keep you in my prayers as you deal with the daily pain and search for answers.
I do not know where you live but Duke in N.C has a clinic that is multi -specialty and has a strong Facial Pain focus . The Duke Innovative Pain Therapies at Brier Creek . This clinic has a really good Dentist and a Pain Researcher who sees patients . Duke has other pain clinics . This particular clinic has a non-opiate focus but they do rec treatments like Amovig, Ketamine , CBD etc along with PT. I think their wait list is at last three months .
Very familiar story for me… thought my pain was dental, in tears and unspeakable pain, no help after a few procedures… went to ER, doc was quite dismissive… emailed my niece & her husband & other niece’s husband (all docs), the latter was still in led school so was up-to-date in all things. He immediately replied “Trigeminal Neuralgia”. True! Three locations of pain, usually all at once but sometimes two or occasionally only one; Temple, Sinus, Jaw. I’m lucky, only have attacks 1-2x/mo, sometimes a few months in between. Holding icy cold (numbing) water IN your mouth helps best for me. I take Gabapentin for chemo-induced peripheral neuralgia. It helps with the TN as well.
Sorry to hear of the things you’re going through. I think a lot of us have had dental experiences that make us think it’s dental. A good neurologist and an MRI at this point could do more help. I went through that whole process of that dental game until an MRI found i was dealing with a tumor on my brain stem hitting on my TN causing all the problems. Hoping you find a solution. Gloria37
So about 2-3 years ago I did have a regular MRI that did not show any nerve issue. It wasn’t some of the ones people on this site mentioned like Fiesta? It was just a regular one. Have had Cat scans too that only saw inflammation & cyst in my left sinus so they suggested an MRI for TN in the results. Ugh! The neurologist I saw definitely does not think I have TN so I am labeled atypical. Thing is my neurologist I am done with her. I just saw her and she says she does not deal with any nerve stuff related with the mouth. She kept asking me in visits- What exactly are you looking for from me? Are you kidding? I am trying to figure out if all of my left sided issues are nerve related or not. Everyone keeps shuffling me.
All of my issues are left sided. It started with upper left jaw. No procedures were done just started getting pain. Was told tooth was told sinus- pulled two teeth and had a minor sinus procedure done in office by ent which 2 months later my lower left jaw started hurting. I had issues with swelling and pain inside my mouth. Just had a root canal on the only suspicious tooth & then an apicio and now I have issues with the apicio.
I don’t know if I have several different issues going on separate from each other… I just know this sucks. The neurologist I was dealing with was no help and just was a waste of my time.
I’m very sorry to hear of your pain, The General Facial Pain forwarded your post due to my involvement with the Facial Pain Association. I’m also a sufferer of excruciating dental, myofacial, Trigeminal and Occipital Neuralgia so they know my struggles.
I highly recommend you see a Neurologist and tell your medical woes. Suggest a referral for an MRI of your Brain Orbit and a Cranial including your mouth be performed.
I’m only forwarded the imminent posts because of my lack of time. I also have end-stage cancer which is a totally separate issue.
Feel free to email me at ploturco8@gmail.com. I’m happy to help, I know a lot…too much but that’s why they forwarded your post.
Hello, So Sorry for your suffering. I am a dentist with TN. Dental pain radiates, it can go from upper teeth to lower teeth even if the offending tooth is a lower one the pain can show up on a top tooth and visa versa. You need to ask the orofacial pain specialist which neurologist she/he works with. I took have been shocked by the lack of knowledge of neurologists. Have you had cone beam(3-D) X-rays of the area? Are you only seeing top endodontists in your city? Only go to a prosthodontist for your dentistry-thats a dentist who has three extra years of training after dental school. They are the intellectual dentists that deal with hard cases.They know all the best people to deal with. I am blown away with ignorant most doctors are about TN, I end up teaching them at my appointments! When doctors don’t know what to do they punt you to someone else, like the neurologist.
Its obvious that 1) you need a new prosthodontist
2)you need a new neurologist
Ask for referrals from the school.
Best of luck
Your Root Canal caused your issue. My Dentist knew right away because his wife had experience with this type of issue. Because of my MS the root canal exposed the nerve and it’s been a pain in my face since 2012. I’ve had 3 Rhyzotomies, 1 on the V2 and 2 on the V3 nerve. I also take Gabapentin 600mg and Oxcarbazepine 600mg. Look into the Rhytozomy procedure. It works great.
Don’t loose hope and keep going to drs and pushing your point. It took me 8yrs if pushing and many drs for them to finally work it out (I was very young at the time which made it harder for me. I was 14 when it started). Hope you find answers soon and some relief for your pain. Stay strong
Layla, Welcome to our world!
I have had atypical trigeminal neuralgia for 9 years. It started out with stabbing pain on top my head. Over the course of about 6 months, the pain spread to all areas of my face on the right and then spread to the left. My pain is constant and moves around. It’s mostly moderate to severe. With the pain I have ringing in my ears, noise sensitivity, twitching (usually not visible, but I can feel it), burning eye (right side only), and depression. I have received something like 18 different diagnoses ranging from TMJ to cluster headaches.
I’ve tried a lot of different medications. Most didn’t work and they all had side effects. One put me into the hospital 2 weeks from falling on my knees due to dizziness-Carbamazepine. Finally what worked for four years was 10 mg of oxycodone every 4 hours which was the only thing that made me feel somewhat normal again. I didn’t realize how well it was working until I stopped taking it. Unfortunately, I had to stop it because of the new DEA and government rules and my Neurologist’s panic.
Interesting is sent to outpatient rehab. Took only 4 days to withdraw. People like us usually don’t get addicted, our bodies do get dependent. Look up painkiller in the dictionary and statistics of addiction for real patients in real pain.
Have tried for Trigemninal Neuralgia II:
Acupuncture
Acetaminophen
Botox
Biofeedback
Carbamazepine
Cymbalta
Gabapentin
Ibuprofen
Lanocaine Patch- (Primary Dr said NO NO!)
Lyrica
Marijuana (Had legal card, Made headaches worse)
Oxcarbazine- (nearly killed me)
Oxycodone-(worked)
Savella
Special Diets
Toporox
Vibryrd
Have been to:
Cedars-Sinai Hospital
After review called and stated could do no more than what has been done for ATN.
Stanford Hospital including Stanford Cyberknife DR’s . Assistant called personally stated after review called and stated could do no more than what has been done for ATN.
Mayo Clinic
Dr. XXXXXXX, Neurosurgeon who performed the MVD on a contact of mine with TN in Utah also stated after review called and stated could do no more than what has been done for ATN.
Cleveland Brain Institute-Called and they also stated could do no more than what has been done for ATN.
Dr XXXXXX, Southern Nevada Pain Center -Stated what do you think I can do for you after review and examining me as our office does not prescribe opioids anymore.
Dr XXXXXXX Neuro Clinic, wife’s neurosurgeon, who thought he could help me sent me to DrXXXXXX Pain Doctor, who saw me and said could do no more than what has been done for ATN, office does not prescribe opioids. Referred me to the Nevada Headache Institute in Las Vegas. Dr saw me and stated could do no more than what has been done for ATN, office does not prescribe opioids even though he feels that would be my best and really only option.
Dr. XXXXXX Neurosurgeon- Sunset Clinic, After waiting 3 months for my appointment two days before I was to go there, office manager calls to cancel as Dr reviewed all my files and will do no surgery for ATN.
Summerlin Cyberknife, my last hope, reviewed all my records and called to cancel my appointment, they will not do this procedure for ATN, TN only.
In June 2018, was close to suicidal, my neurologist finally gave me a prescription for 2 15 mg oxycodone to be split in half and taken twice a day. It works but is kind of like a tease, because I need twice that. No one will give me anything for break through pain which of course has to have a narcotic in it.
And I’m now 71 and ashamed of our government, DEA, etc.
Larry
Larry thank you for your reply & everyone else who has taken the time to reply. My heart breaks for everyone trying to get answers & getting pushed back and forth. It is mentally draining, expensive, and it takes a toll on our overall well being. I am glad you finally found some relief in the oxycodine. It’s a shame people who truly benefit from it are being denied due to the fear of abuse. Heck now Gabbapentin is considered a risk when I was on it they changed rules with it.
I have had many imaging from MRI, dental scans, and Sinus scans and a brain CT. Overall I do have inflammation in my sinus and a cyst on my bad side. Sinus drs don’t think that should cause pain. Dental drs say I should clean out sinus to see if it helps because nothing is showing on dental scans. However dental scans only show so much not every angle so one can have something going on but it isn’t showing yet on the scan. That happened to someone I know. 2 years of issues & it was a hidden dental issue. For me I had some procedures within the last few years- that definitely have created further issues. The latest was an apicio & It feels like something is wrong unless it’s nerve pain. I feel extra tender in the jaw and under chin area. So- I have to monitor that. I have so many unusual symptoms and I am happy for this site to see if it sounds like nerve or not.
Weird minor swelling on face 2 different areas. Very minor- itchy.
upper jaw left- started 1st
lower jaw left- under the teeth achy. Teeth never hurt but is achy in jaw and I feel it under. Localized jaw area of tenderness- if I lean on the jaw it hurts. If I don’t touch area I can be ok. The inside of mouth left side it’s tender in the gum area. It feels very tender when pressing a certain area by the root of the tooth I just had the root canal & apicio work done.
nose pain, left side
I will look into a prosodontist & get a better neurologist & will follow up on scans to make sure nothing is setting this all off. I really want to make sure I have no hidden infections.
Thank you all for listening & responding. I will definitely update & most likely will vent sometime soon.
Hi, I have the same condition. Same old same old! MRI, Meds, CT scans, Multiple Dentist. ATN plus other symptoms. I can actually say have been a cranial dentist who knows about alignment and I do not experience the symptoms I had. It is all about (for me) alignment of my jaw. But you do have to find a dentist n that field and they are few and far between. Google Dr Gerry Smith and he explains it perfectly. Good luck
This sounds familiar. My new problem is that when I had to move to a new state, specialists don’t want me as a patient. Even with great insurance and documentation. So I’ve gone from being happy with a mostly invisible disability to being disabled, housebound, and seeing no future. I have a confitmrned diagnosis and I’ve done every treatment. My previous doctor can no longer treat me, and I’m back to going to the ER with my 500-page medical file.
Thats reassuring you have similar symptoms with the lower jaw. This one tooth that I had work on hoping it would solve the problem… had a crack in it. I remember when I would eat a chip or something hard & it hit the tooth the wrong way… ouch! I let it go a few months then went to endodontist & he thought the crack was just a surface crack & said to crown it. I didn’t… I was too busy dealing with my upper jaw issues that I let it go. I then got more opinions & no one saw anything. Then my new dentist & the endodontist thought whatever inflammation/possible infection was getting into the nerve. So that’s the only reason why I did those procedures on that molar. So the root tip surgery was unsuccessful & made things worse! I asked the endo when he went inside if he saw any cracks because I fear there is a micro crack & wondering if this tooth has to get extracted. I can chew on the tooth fine however if I eat something very hard & it hits that area the wrong way it is sensitive so not sure if that’s just how it will be since it has a crack. It’s crowned now. Anyway- we all want answers. As for TMJ/TMD- I did get a dental scan done by a TMJ dr & he showed me my left jaw joint is almost bone on bone. My left side is more degenerated than my right. My right side I get all the cracks & popping noises when I open my mouth & have had ear pain on the right side yet my left is the worst side & the only area of pain is my lower left sided jaw like it flares under a tooth sometimes I think it’s coming from my extracted wisdom tooth that was done years ago. Like I can feel it back there. The localized jaw pain I get in the gums on the inside by the tooth I had work done. It’s so weird I hate it. I have never had tooth pain just pain under the left side & sometimes a tooth on my upper left side which may or not be sinus related.