K-Jo, I am so sorry that you are going through this. Having TN pain is the worst pain imaginable, and I empathize with you. It can be very scary and debilitating. Hopefully you have a good support system of friends and family that will help you get through this.

If you don't mind my suggestions, the first thing to do is get an actual diagnosis. Go see your primary care doctor, or visit a walk in clinic. Try to keep a diary of the pain, what it feels like, when it happens, and what you are doing when it happens, how long it lasts, what (if anything) makes the pain subside, etc. Your doctor should schedule a visit with a Neurologist, and hopefully they will schedule a cranial (trigeminal) MRI right away, to determine if you have an obvious case of TN that can be treated with surgery (e.g. compression on the trigeminal nerve, MS, tumor, etc.). I know that sounds scary, but from my research there are a large number of people suffering from TN that do not have any of these, and if they do there are treatment options.

If your MRI shows no obvious cause of TN, then looking into other reasons for your TN. I've had a couple of root canals done and they are no picnic. They are essentially killing the tooth (by killing the root nerve) and you will eventually have to have that tooth removed. It may be something you want to be 100% sure is necessary before you have it done.

I've had success quite a few years ago with treating my TN (no obvious reason found on MRI) with physical therapy. I was pain free for several years after 3 months of PT. Since it came back this year I have been seeing an upper cervical doctor and he has been very helpful.

There can be other causes for TN as well as non-invasive treatments. I posted a thread the same day you did that you might find helpful. I know it's excruciatingly painful, scary, frustrating, and depressing, but trying to keep a positive outlook and not stress out will help you in your fight. Wishing you well!

Thank you so much for your feedback! Looks like I’m on the right track.
I’ve got an appointment with my NP this week as well as with my NUCCA chiropractor.
Made appointment with a different dentist to get a second opinion on my teeth.
I’m very encouraged to hear about your PT helping as I’m not a fan of pharmaceuticals and their side affects.
It would be helpful to me to hear what your journey has looked like. What age you were when it started, how long you’ve been living with it, what your first signs of it were, etc…
I’m not a woman of fear, but I’d be lying if I said I’m not terrified.
Again, thank you for what you’ve offered and anything else that you can!
Regards

You are so welcome! So glad to hear you have some appointments scheduled! I too am not a fan of pharmaceuticals and did not want to take the typical meds the doctors prescribe when anyone has signs of TN.
Mine is a bit of a long story so I'll try to make it brief. About 10 years ago I experienced my first of many, electric shock pains on the right side near my eye. Visited walk in clinic where they prescribed NSAIDs and muscle relaxers, neither of which really helped, a neurologist who did standard testing, all normal. I also saw a physical therapist because I had muscle pain in my shoulder and neck in addition to the TN. I was happy when my therapist told me he wrote his college thesis on the trigeminal nerve. During one visit I was having TN pain, he moved my head/neck and was able to make the pain come and go. After 3 months of physical therapy, I was pain free.
Earlier this year it all came back, the TN, muscles spasms in my neck and shoulders, all on the same right side. My PT had moved away so I tried other avenues; doctors, other physical therapists (helped a bit), traditional chiropractor (no help), neurologist, and an upper cervical doctor. Cranial/trigeminal MRI showed no obvious signs of TN. My new neurologist (wonderful doctor) ordered neck MRI since my neck spasms coincided with the TN. It showed a small bulging disc on my 3rd & 4th vertebra that was coming in contact with a nerve. She suggested I continue seeing my NUCCA chiropractor for treatment. My NUCCA doctor is fantastic, and I've been TN pain free for a couple of weeks.
I believe in my TN case my neck muscle pulling/tightness and spasms are contributors, which was aided by stress and lots of computer work. I was in an auto accident about 20 years ago, afterwards I had muscle pain on my right-side shoulder and neck area, and it never fully went away. Prescription strength naproxen would dampen, then completely remove my TN pain after a couple of days and stay gone for a few days to a week once I stopped taking it. Normally an NSAID would not touch TN pain. However, the pain I felt is TN pain, as it was debilitating electric shocks, jabbing / attacking my jaw/mouth area, sometimes my eye, and into my temples at times. The absolute worst was when it went into my ear, thankfully that only happened twice. I could not eat or brush my teeth for days at the start, then I could only eat soft bland foods very slowly. I couldn’t put on lipstick, lay on my side, or sit at the table, etc. The only relief I could find at times was to lay flat on my back, again making me feel that my neck/shoulder muscles play a large role in triggering my TN.
The trigeminal nerve is remarkable. It's my understanding that there are nerves in the neck that feed into the trigeminal nucleus. If there is a problem with the neck it seems plausible that the brain could get a bad signal (or crossed wires) and respond with trigeminal pain. I've also heard about the possibility of the brain getting too many pain signals and becoming sort of hypersensitive. Could it be similar to those people who develop seasonal allergies suddenly, or auto-immune diseases, because something goes sort of haywire?
That is my story and I don’t expect anyone to get the same relief or results that I have, as I think we are all different, and have our own stories. However maybe it will inspire some thought as to other avenues that could be contributing to one’s TN pain.
If you want to watch interesting videos about upper chiropractic and TN, there are some recent videos at Progressive Chiropractic youtube channel, just search for trigeminal (https://www.youtube.com/watch?v=xkt3Lzrg1TQ)
I truly hope that you will have answers and relief soon!

Thank you for being so generous with your time and explanation. You wouldn’t happen to live in Illinois? Wondering about your NUCCA chiro.. I also was in a car accident (rear-ended) twice in two years time and wondered if that could be a contributor.
I just wish there was something more clear cut….seems kind of like a guessing game :(

No not in Illinois, I am west of you. Found my NUCCA doctor by searching online. What NUCCA doctor are you seeing? Have you had a chance to watch the videos yet? Wow two car accidents in two years, how terrible! I know what you mean about a clear cut answer, as I heard that an MRI might not show if a blood vessel is coming in contact with the trigeminal nerve. A clear cut answer could mean a tumor or MS though. :( On my journey I found very little information about TN, so my intention was to post my story in case it might help someone struggling with an unknown cause of TN pain.
My time on the computer nowadays is minimal, but when I can I'd love to read about your progress if you are feeling up to posting. Stay strong and keep up the fight!

I so appreciate you :)

I had the exact experience seven weeks ago. I’m so sorry you are experiencing the awful pain. I got a MRI and it didn’t show any obvious cause. I am taking 400 mg of Gaberpentine three times a day. It helps, but I started at 100 mg three times a day, so in just seven weeks the dosage keeps going up. I am trying to get an appointment with a Neurologist next. I also contacted Mayo Clinic and had a first interview on Monday, so I hope to hear back from them in a few weeks. I have never met anyone who has this disease, and never knew it was a “thing”. I’m am trying my hardest to take this one day at a time. Thanks for listening.