Hi,
Brand new here, hello everyone. I’ve been sick for a couple of years, and was referred to a holistic dentist in 2018. I was told that I had pockets of infection in my soft tissue where I had teeth removed, and a root canal. He said they were badly infected and they needed to be operated on. After having surgery in late 2018, I developed electric pain down my jaw line and through my sinus. I have pain constantly, with spikes of pain many times a day. I find that my autonomic nervous system is affected and reacting to this pain. My right side of my face swells as well as part of my skull and jaw. The area gets hot to the touch, even from inches away. It feels like my face is attacking me.
Anyone else relate? I’m struggling, real hard. Never want to ask for help, but here I am asking. Any comments or suggestions are welcome. I look forward to getting to know many of you and hope to learn from your journeys as well. V
Hey Dealhealgrow,
My name is Merl I’m a member of the Moderator Support Team hear on Ben’s Friends. I’ve had a few neurosurgeries and as a result one of my diagnosis has been TN. I’ve seen too many dr’s to list with everything from dental to optical to neuro being blamed as a cause for my ongoing pain. I had all of my top teeth removed, but to no avail. My eyes have been tested and I now have glasses, but it doesn’t help the pain and as for the neuro’s, well, I’ve tried all of their theories/treatments/remedies and given everything from hydrotherapy to acupuncture to a TENS machine. As for the meds, tried a bit of everything from heart meds to psych meds to epilepsy meds but none of them were my key, but I’d HIGHLY recommend you try every option available to you, you never know one of those options may be your ‘key’, so try them all. That one thing we may ignore or dismiss could be that one thing that works. Hell, if someone told me facing north, standing on one leg, singing kumbaya worked I’d give it a go.
But don’t lose hope, there are others out there trying to battle through with the same thing and we know, it ain’t easy. So come talk to us.
Hello,
Welcome, and my condolences on joining our group. I’m 4 days away from my 6th anniversary of ATN/atypical facial pain.
My pain is also linked to oral surgery, mine was having my wisdom teeth carved out of my jaws because they were fully impacted. Immediately after that surgery I had numbness on both sides of my mouth and a few years later the left side erupted into pain. I have constant crushing/aching pain, with occasional stabbing pains.
I have not had the swelling or heat, but I know others who have.
Many people find either ice or heat either on the face or on the back of the head can help some. I sometimes use ice behind my bad side ear, I can’t put ice or heat on my face.
Otc Lidocaine products have been helpful for me, both creams and patches. Others find capsaicin products work better for them.
The Tricyclic Antidepressants like Nortriptyline have worked better for me than the anticonvulsants like Gabapentin or Oxcarbazipine. But medications are gonna work differently for everyone, so it is important to have a doctor who is ready to help you switch when something isn’t working after a few weeks or gives you bad side effects at any point.
Same here.Try everything until they get tired of you and won’t see you anymore.
What I don’t get-and it is the only thing that knocks my pain down are codeine products.like after you have tried everything else-even lamotrogine that can give you a headache for a year and is an antipsychotic drug =maybe find someone who will try that.
Good luck.
They would rather us jump in the lake than prescribe something that mght trigger their name for prescribing narcotics.
Other than that the only thing that helps are mints and peppermng essential oil on the outside.
Try and get into a pain clinic that specializes in facial pain.Good Luck with that.Here I am in the largest city in Canada and can’t get into a facial pain clinic.Maybe because the last pain clinic doctor could not work with this type of pain(and anyone who had this type of pain was no longer referred to that doctor but had to go to the paid dental area of the hospital)So don’t p off any doctors or you get blacklisted.
And then you have your family doctor-poor guy-having to fill in where no one else will,that is my savng grace.
So -ya-good luck -you never know what works.Maybe the moderator has something that works.I could not imagine trying to work while in this pain-24 7.Marijuana oil lets me sleep/The THC.CBD does nothing for me.So there is that too.
Lot’s of ideas.Lost the pain once when an ear doctor twisted my head once-but then fell flat on my face the next day-and doctoor says he would never have done that.I do think that some of the problem is in the C3 area for me-but I can think all I want-does not mean anyone will listen-especially when you can’t get into a pain clinic.Good Luck-it’s a waiting game
I use Aspercream brand patch I cut them down to about 1*2 inches or smaller, and then glue a few edges with eye lash glue to keep them on longer. Hope it helps.
Thank you Meryl. In the process of finding out what was happening with me, I was convinced to have jaw surgery as they found pockets of infection from previous root canals, and extractions. He exposed the trigeminal nerve during surgery. The existing pain was bad enough, add to it nerve damage. Still blind to understanding what trigeminal neuralgia is, I went through a second surgery as we were told the infection still remained. Again, with the nerve being exposed. I lost trust in this Dental “surgeon”.
As I was already on a path to heal things I had no idea were happening, the facial pain has changed that trajectory. I find it very frustrating that medical doctors refuse to do anything with the mouth, and yet dental professionals only want to deal with the mouth. It would be amazing if there was a marriage of those two, I can only think of how many people could be helped.
I was already on a cocktail of medications. I have not tried all of the traditional TN medication although I’m currently on Lyrica and amitriptyline and CBD. I have had two nerve blocks to the sphenopalatine ganglion this year. Both unsuccessful. I have an MRI scheduled for Saturday morning at 1:30 AM. I am feeling very fortunate that I have secured an appointment with a neurosurgeon to get an opinion if I’m a candidate for surgery.
Thank you for your words of encouragement. I am finding that I dip in these Lowe’s and it’s helpful to have the reminder that we just have to keep trying and keep going. Easier said than done!
It’s been a big week of appointments and tests and so now I’m going to have an ice pack on my face and watch an episode of The Office. That show cracks me up every time
Hi there, I am three years in to nerve pain above my front tooth from a botched surgery (Plus years of root canals around that area due to a baseball injury when I was 14). Just curious without having to scroll through this entire forum, does this type of pain continue for your entire life, daily? I’m 42 years old and I’m having a really hard time grasping that this might be my reality. So far, I’ve had success and long periods of relief on gabapentin and nortriptyline but I’m having a bad stretch of about 11 months and have trialed every medication you could possibly imagine for TN with no help.
Ellen I’m in Toronto, just curious where you are and what specialists you’ve seen? I’m going to the Mount Sinai pain clinic in January for the first time, hoping for success with a nerve block.
Hi
I am in Toronto
I understand that the doctor I saw at Mount Sinai is no longer there(yay) .
I have not seen too many doctors recently .Nothing has worked.I just got back from the Wilderman Clinic and Dr.Wilderman did a marcaine shot.He would not do cortisone.I don’t think I will be going back.I had seen Dr. Waunsbreu(sp) there and he had done an injection that took the pain away completley(but only for 2 days)I think he is at the orthopedic clinic now.He is a good guy.I had a hissy fit because TAPMI rejected my doctors referal ,after I had gone to the Gamma Knfe center a couple weekss ago and the doctor said I should go to Mount Sinai and that Dr.R was no longer there.I guess she got a reputation.
I am doing a weekly pain psychotherapy group thing with a doctor from Toronto Western.It is a group thing-compassionate and MBSR.I find the compassionate care stuff works much better than the MBSR.I don’t know of a way for us to connect if you want to.
The doctor at Gamma Knife spoke highly and I would love it if you got back to me.I have a tentative thing now on TAPMI for February.Not sure if it is going to happen.I don’t have the doctors name.So glad you got in.
Anyways-let me know -I am in the south west end of the city.Think hatchet attack.
Maybe we can socially distance show off our non teeth.The masks have been a life saver for me.
Let me know what’s up.Not too many buds around with the pain lately.
Hey dealhealgrow,
I too have had that frustration. It’s like they play off of each other and it gives them both a way ‘Out’. One of my neurosurgeons tried a similar tactic ‘Ohh, it’s nothing we have done… …it must be YOU…’ Like we make a conscious decision to be in agony. Like we enjoy it so much that we choose to be in constant pain. Who on earth would be crazy enough to want THIS? Not I, that’s for damn sure.
For me, I’ve had multiple neurosurgeries and as soon as I start asking the dentist questions they automatically turn it around to all being neurosurgery related, not dental. “You’ve had major brain surgery, What did you expect???” Well, I didn’t expect THIS.
So, in a way, I’m stuck in between 2 competing theories, neuro or dental
I wish you the very best of luck with your appointments and tests. Let us know how it all goes.
I completely understand and I’ve recently had a consult with a neurosurgeon and despite my MRI showing that a vein is lying against the trigeminal nerve, he saying surgery wouldn’t be recommended because no compression is visible. I too have been sent back to find someone who can address the dental and facial issues.
I’ve recently seen a third ear nose and throat specialist here in Vancouver. I have had chronic sinus issues and infections and was always blamed on a poor immune system etc. after he read my CT scan which initially received an all clear from the radiologist, it was clear I had a fracture just above my sinuses where I must’ve had a broken nose at some point and it was not reset. It’s so far up that I don’t have the “bump”. I was quite shocked. The main point of this is that due to that anatomy shift it created 2 cups that have been growing overtime in those cups, collect bacteria and viruses that I breathe then as the pinch my airways and drainage pathways. I am going in on Tuesday to have surgery to address this. My thinking is that if I can help take pressure on my facial nerves from above, perhaps it will help my pain. Wish me luck!!
I recently received the names of a couple of specialists that are supposed to be able to connect these two things together or the trigeminal nerve and dental issues here in Vancouver. I will be contacting him in the future and would be happy to share if I have favorable results.
So far, I’ve had success and long periods of relief on gabapentin and nortriptyline but I’m having a bad stretch of about 11 months and have trialed every medication you could possibly imagine for TN with no help.