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Trigeminal Neuralgia Nightmare

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Mugz

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Hi All,

A little background: I’ve had RA and TMJ for years. When the TMJ would flare up the entire left side of my face and teeth would ache constantly for months but eventually it would stop for a few weeks then something would trigger it and it would start up again. It has increased in frequency over the last 5 years and the bouts have gotten closer and closer together.

I had Shingles for the first time in March and since then have had constant, extremely painful facial pain that has increased exponentially over the last few months. My Dr. is very confident it’s Trigeminal Neuralgia Type 2 which was devastating to hear and not what I was expecting. She’s put me on Gabapentin and topamax to start which has actually helped, not completely but pain is improved and I slept for the first time in months. My questions are:

I don’t have to see a dentist for treatment in addition to the medical doctor for this, do I ?

Does shingles cause this or did TMJ cause it or is it my broken tooth that is the culprit?

Wil it ever go away? Will it get worse?

Thanks for your help.
 
M

MountainMama

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Jul 1, 2018
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I am not a dentist so I can’t answer in a medical capacity. I have recently been diagnosed with atypical facial pain, which seems to be the same as the type 2 trigeminal neuralgia (I may be wrong on that though).
I was told by my oral surgeon to go to my medical provider for treatment. The dentist is aware of the issue and it does change how he treats my teeth. My medical doctor sent me to get an MRI to rule out other causes and I actually have an appointment with a neurologist tomorrow. I plan on asking some of those same questions you have so I will report back after my appointment. I have never had shingles but I have always had mild eczema and right around the time the pain in my face started my eczema went crazy and I had to get medication for it for the first time ever. It is still bad.
My previous oral surgeon said that it was probably triggered by the dental work that I had done, which was quite a bit in a short time. From what he said, it will never be “cured” but can go into remission if I am lucky, with flare ups occasionally instead of constant pain like I have now.
 
M

Mugz

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Thank you for sharing your perspective. I’m very sorry you have this. I’d be very interested to hear what answers you get from your appointment. I have only seen my medical dr about this (my rheumatologist) who seemed pretty well versed but am curious about how your neurologist will approach. Good luck to you. Fingers crossed some good comes from your appointment.
 
M

MountainMama

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Thank you for sharing your perspective. I’m very sorry you have this. I’d be very interested to hear what answers you get from your appointment. I have only seen my medical dr about this (my rheumatologist) who seemed pretty well versed but am curious about how your neurologist will approach. Good luck to you. Fingers crossed some good comes from your appointment.
Thanks. I will update after my appointment
 
M

MountainMama

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The neurologist had me do a lot of tests and he poked around on my face. He said he needed to see my MRI scans (which hadn’t been put in the system yet) so he ordered blood work and I go back in six weeks.
He did say that usually permanent neuropathy is due to a damaged nerve, and that atypical facial pain or type two trigeminal neuralgia (which he called atypical neuralgia) is usually triggered by an underlying condition, like an autoimmune disorder. He also said that there are medications that can help, like the ones you mentioned. There is no cure but it can go away for periods of time and flare up with stress or dental issues.
 
M

Mugz

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Thank you so much for sharing such a detailed report. Sounds like my doc was on point and agreed with yours. Thanks for your help. Wishing you some permanent relief for your pain....and fast!!!! Stay safe and healthy!
 
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