Alright, this is a story.
So for five years, I’ve been getting both burning/tingling and occasional stabbing/throbbing/tearing pain. All six branches are affected, mostly the right maxillary and mandibular nerves. Except… maybe three weeks ago, everything shifted.
Now, admittedly, I haven’t seen a dentist in quite a while. I contacted a dentist who does more specialized care and she told me that if my pain is not well controlled, she doesn’t want to see me in her office unless I have a dental emergency. And thanks to interactions between my medications, most meds for TN are off the list and my pain is duller but not gone. There’s tartar behind my front bottom teeth (and I’m sure elsewhere) and about three weeks ago, a definite piece of tartar came off. Which was followed by more (it was a wedge between two teeth that came out so I guess it created a tidal wave) and more pieces and a lot of sensitivity, which is expected. As such, I tried to keep my tongue (which is comically huge for my mouth) from touching the back of my front teeth because those areas were very tender.
Over about the last two weeks however, there’s been totally different pain. Now if I try to bend forward, it feels like all my lower teeth are slowly being pulled out. There’s constant pressure on my chin and if I stand up and sit down too fast, I get pulsating pain in my jaw. There’s a constant ache in my tongue and neck around my throat and later in the day I’ve been getting that same pressure and aching in and around my ears. It’s like my muscles and skin are too small for my head or something and every time I try to press my lips together (imagine how you rub your lips together after using lip balm) there’s a pulling sensation in my lip like it can’t quite reach. Same thing goes for if I tilt my head upward, it feels like someone is pulling my skin back. The other normal pains are still there if I touch my face but all of this other stuff is new. And weirdly, I feel like my saliva has gotten thicker since then, even if I drink a ton of water/liquids. And sometimes my jaw feels a bit numb.
Has anyone else had these sensations or had their pain change completely after years of the same pains? I’m not sure if it’s even nerve pain and if I should instead see some other type of specialist if this continues.
Hey Meerkat,
In short, No, you’re not the only one. So, long, long story, cut short. Reported ‘odd’ pain for years, with no answers or the only answer was psychological. Then they found a cause and operated, ‘All fixed’ or so they said, but it wasn’t fixed. I kept reporting ongoing pain, ‘ALL FIXED’. My pain had changed and not for the better. I went looking for answers elsewhere . I tried all sorts of meds and all sorts of therapies ie acupuncture, Bowen therapy, hydrotherapy. I was given all of these ‘might be…’ theories, ‘might be neck muscles’, ‘could be TN’, ‘its possibly cervical’, ‘maybe it’s dental’……. and of course, ‘nerve pain’ was one of the (many) diagnosis
I saw every sort of dr
I had multiple Botox treatments. Gave me a real sexy neck 
, but no pain benefit
I also had all of my top teeth removed… …it wasn’t my teeth.
I have exhausted every avenue presented to me to try and find a treatment but this has proven very difficult, nothing has proven to be my ‘key’. My symptoms seem to fluctuate massively, so trying to pinpoint a cause has been near impossible, there are just so many variables. This has meant that I need to vary my treatment options and not be fixed to a single management tool, as some medicos have wished ie ‘My treatment is the only one you need…’ I have to manage all of this for me, not them.
This is not easy for anyone as there can be many causes/effects and treatments for facial pain/TN and nerve pain. Often it can be a case of working out what works best for you as an individual.
Merl from the Moderator Support Team
Hi there,
I joined this group In 2013 when my mother got TN and she had the Cyberknife done…it was in 2014 and she is still pain free and off all meds except 125 mg of trileptal only as a crutch because she is afraid to completely come off of it…at a minimum, because everyone’s symptoms are so unique, you might consider getting a brain MRI…not sure your financial / insurance/situation, but after 2 root canals and being severely doped up, the MRI actually showed where the lesion was that was putting pressure on the nerve that runs down along the jaw…everyone else up to that point was just swagging it and handing out pills…They zapped it and she went through a rough 2 week period then the pain stopped…Cyberknife is the one where they don’t put that crown with the screws, this is interference free. Hopefully this group will help you find a solution or at least give you some comfort…wishing you well…
Hello Meerkat,
Wow, I am so very sorry that you are experiencing this!
I will suggest something that has helped me immeasurably: it’s called NUCCA. It’s a specialized type of chiropractic care, and by “specialized” I mean there is no cracking, popping, or pain. None.
You can learn more here: https://nucca.org/what-is-nucca/
Best wishes,
Conna
1 Like