Orofacial pain / toothaches with no dental origin / headaches

Posted by plo99ca @plo99ca, Feb 21, 2023

I've been dealing with ongoing orofacial pain issues for a few years. After many dental problems when I was younger, I ended up having multiple dental surgeries (root canals, extractions, and a few implants). I have now developed what seems to be a chronic pain syndrome which feels like a dull toothache in my upper left jaw. My other symptoms are intermittent dull headaches, and occasional face/scalp numbness & tingling on left side. I am also grinding my teeth at night and am now wearing a night guard for that. I've seen many docs including dentists, endodontists, periodontists, 2 neurologists and 1 ear-nose-throat doctor... none of them have been able to locate the specific cause but the consensus seems to be that I have some sort of neuralgia/nerve damage from all the dental work. I had a CT scan recently which revealed no major issues. I am also finally getting an MRI (with contrast) next week, hopefully that sheds some light on this. The pain can be debilitating at times and frequently keeps me from enjoying time with family and friends. I'm a 60 year old male who has always been in very good health. My doc has prescribed amitriptyline which I am starting this week to hopefully address the pain. Anyone else experiencing something like this?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

John, Volunteer Mentor | @johnbishop | Feb 22, 2023

Hello @plo99ca, Welcome to Connect. I know it must be frustrating not being able to find a solution after seeing so many doctors and specialists. I'm hoping your upcoming MRI may provide some answers. While we wait for other members with experience to reply, I thought I would share a few articles about orofacial pain and the difficulty of diagnosing the cause.

--- Pain, headache, and oromandibular structures:
https://www.medlink.com/articles/pain-headache-and-oromandibular-structures
--- Pain in your teeth or face may actually originate in other parts of the head—and a form of migraine may be the cause.: https://americanmigrainefoundation.org/resource-library/orofacial-pain/.

I also found this patient story shared in another discussion on Trigeminal Neuralgia here - https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/.
--- After More Than Two Decades, Ellen Bids Devastating Facial Pain Goodbye https://sharing.mayoclinic.org/2020/03/02/after-more-than-two-decades-ellen-bids-devastating-facial-pain-goodbye/: https://newsnetwork.mayoclinic.org/discussion/after-more-than-two-decades-ellen-bids-devastating-facial-pain-goodbye/.

Can you post an update after your upcoming MRI with contrast?

kenyalama | @kenyalama | Feb 22, 2023

Dear Ellen,
I wonder if you coukd ask your doctor if this could be trigeminal neuralgia. The MRI might not show much or it might show a vessel pressing on the trigeminal nerve ( my case ) but also in my case after havin brain surgeries and radiation to “liberate” the nerve I still have pain although now managed by a pain pump but again, I would suggest to ask the doctores if it’s possible you have trigeminal neurakgia
All the best!
Anny

ploca99 | @ploca99 | Feb 22, 2023

In reply to @johnbishop "Hello @plo99ca, Welcome to Connect. I know it must be frustrating not being able to find..." + (show)

Thank you for those links. It helps to know that I’m not alone in this. I’ll post again when I get the MRI results.

wendynorlin | @wendynorlin | Feb 23, 2023

You could be describing me in your post. I too have unexplained dental pain, many root canals, implants, extractions, etc. I had a bout with trigeminal neuralgia some years back also. Trust me - there is a reason they call it the suicide disease. I grind/clench my teeth. Been to many specialists, dentists, etc. Nothing seems to help. I have found that relaxation techniques and heat provide temporary relief. But only temporary. Do let us know what the MRI shows.

SusanEllen66 | @SusanEllen66 | Feb 23, 2023

@plo99ca I have similar symptoms. I was diagnosed with Occipital Neuralgia. It is caused by the neck and skull misalignment. The only thing that is helping is physical therapy, and I got a new pillow that helps keep my head inline with my spine.
Check out videos on YouTube. There are several videos that demonstrate the stretching exercises for Occipital Neuralgia.
Hopefully you will feel better soon.
Susan

irene5 Irene Estes | @irene5 | Feb 24, 2023

In reply to @ploca99 "Thank you for those links. It helps to know that I’m not alone in this. I’ll..." + (show)

It very well could be trigeminal neuralgia, but here is my story!! I had root canals done on every tooth in my mouth just about. Finally in 2015 my teeth were removed and I received 7 dental implants. I started with constant pain and throbbing where one implant was put. I was checked and rechecked! Nothing wrong. I was diagnosed with MAC, a lung disease and began medication for that - which by the way has been linked to dental procedures and dental water supply! My one sided face pain continued. My eye hurt so badly. My husband couldn’t get over how my face would swell. I’d be in bed all day. I even missed one of my children’s weddings!! 🙁 Long story short fast forward to 2022!!! I had a complication from a lung procedure and ended up spending a good portion of time in the hospital with a chest tube. New diagnosis!! Invasive aspergillosis fumagatos with pneumonia. I was placed on a drug called Vfend, and within a week those face headaches stopped!! I am convinced the Aspergillosis was in my sinus as well as in my lungs. I have no other explanation for that significant a cure. Don’t give up. Your face pain could be caused from something somewhere else in your body! I literally spent years in agony. Good luck to you. irene5

dmk | @dmk | Feb 24, 2023

Have. Your sinuses been evaluate by X-ray , and ct scan to rule out things there can cause headaches and tooth pain

irene5 Irene Estes | @irene5 | Feb 25, 2023

In reply to @dmk "Have. Your sinuses been evaluate by X-ray , and ct scan to rule out things there..." + (show)

Yes, but nothing significant ever showed . Nothing ever showed in my lungs either except MAC until they actually went in there and did a biopsy! And then bingo!! Not to have that horrible “put a bullet to my head” one sided face pain anymore is truly a miracle for me! And I am not saying that is what yours is- just a thought. I will say the whole ugly journey started with my dental implants. Best of luck . Tis a horrible way to live- in that kind of pain. I persevered and so did my doctors.

linamend | @linamend | Feb 25, 2023

In reply to @irene5 "It very well could be trigeminal neuralgia, but here is my story!! I had root canals..." + (show)

A fungus infection (Aspergillosis) could indeed have caused all that pain. Hugs.

plo99ca | @plo99ca | Feb 28, 2023

Thank you all for your concern and for sharing your stories. Here is an update on my situation....while waiting for the results of my MRI this week, I just found out from my neurologist that my B12 levels were very very low. This was a suprise to me. I am now on weekly B12 injections from my doc for 1 month to see if a normal B12 level can be maintained. Apparently a significant B12 deficiency can cause many of my symptoms, I had no idea! I eat a varied healthy diet including meat so it is a bit strange to me that my B12 is so low. This mystery is unfolding slowly, I will keep you posted.