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How did trigeminal neuralgia begin for you?

I was just given a preliminary diagnosis of trigeminal neuralgia and, after spending too much time reading online about it, am completely terrified.  I will be meeting with a neurologist next week to discuss treatment options.  In most ways, my symptoms seem to match what I read online:  it feels like dental pain, on one side of my face (usually in the lower molar area, sometimes in the upper), and is triggered by warm or cool food and drinks, or chewing, or sometimes even the wind.  The pain usually lasts about 10 seconds, although it once lasted for over 2 minutes.  The pain is intense -- like an extreme, intense version of cold sensitivity -- but I don't know that I'd describe it as shock-like, or as the worst pain I've ever felt.  (I get frequent migraines, and I think that pain is worse.)  

I'm wondering if this is how TN normally begins -- if it begins mildly and sporadically, and then inevitably progresses to more extreme pain.  I'm clinging to the hope that maybe this is something other than TN.  (For example, I have to wear a nightguard at night because I clench my teeth, which often causes an aching jaw.  So I keep wondering if maybe that's the cause of this pain.  But maybe that's wishful thinking, because I'm hoping so much that this isn't really TN.)  

The dentist and endodontist have found no explanation for the dental pain -- nothing appears to be wrong with the tooth where the pain is usually located. In fact, it was an endodontist who first suggested being assessed for TN.  
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Avatar universal
My TN started out as "phantom" toothaches. I would go to the dentist and he wouldn't find anything wrong with my teeth. He mentioned it might be a nerve. This happened off and on.
About a year later, I was blowing my nose and had an electric shock that went up the side of my nose to the top of my head. It was intense. I thought I had done something to my sinuses. I went to an ENT who did a CAT scan that showed nothing wrong. He also mentioned it might be a nerve.
My triggers were brushing my teeth, washing my face, eating, and talking.
I went to my Internist who ran a variety of tests and diagnosed Trigeminal Neuralgia. She put me on Gabapentin which did not stop the pain and she didn't know enough about TN to increase the dosage.
I have MS, so I went to my neurologist. He agreed it was TN and took me off Gabapentin and put me on Tegretol. It made me a zombie and didn't control the pain. Again the Neuro didn't know enough to increase the dosage.
I was referred to a Facial Pain Specialist. He took me off Tegretol and put me on Trileptal. He deals with facial pain patients daily and slowly increased the dosage until we controlled the pain.
Due to my MS, the assumption was MS was causing the TN.  I had MRIs that did not show a blood vessel compressing the nerve -- the usual cause of TN.
So I had 3 procedures that are recommended for MS/TN patients:  a Gamma Knife - that did not work, a Balloon Rhizotomy - that worked for about a month, then a second Balloon Rhizotomy - that kept me pain free and medication free for 5 years.
Last June, the pains came back. 5 years later MRIs had gotten better and they saw a blood vessel pressing on the TN nerve. I had an MVD in November and am once again pain free and medication free.
TN does progress over time. If your diagnosis is confirmed you want to find a doctor with a lot of experience with TN. You want to control the pain thru medication and then find a good neurosurgeon that can discuss your options and prognosis.
It is possible to get relief and get on with your life. You just need to locate the best doctors in your area.
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