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Trigeminal Neuralgia.


OCsunshine
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Hi all, this is being carried over from my last strand "Mouth Pain / Throbbing" because I finally have a diagnosis! Trigeminal Neuralgia.

Now I have to still rule out other things with bloodwork and an MRI, and I'm going to see a specialty doc to confirm the diagnosis. My GP is pretty sure that's what this is, though.

WHEW! So I just googled the terminology and found all kinds of info about it, along with great info on Dr Ben Carson (Hopkins) and how he treats this problem with surgery.

Right now it hurts SO BAD I am ready to go in for surgery tomorrow, BUT I understand that my doctor wants to try smaller treatments first (I got a Rx for Neurontin, 100mg at night to start with).

Just wondering if anyone else was familiar with TN and the treatments?

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I'm glad you got a diagnoses at last! I'm sorry it's something so painful! I don't know a lot about it, although I think it has an autoimmune basis. But don't quote me. It just seems I remember it being in a series of dignoses that rheumys deal with when I was looking at autoimmune stuff. There was a gal at a hospital I worked at that used a tens unit on hers and said it helped a lot. I hope they find something in short order for you! morgan

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I don't have anything to add, because I'm ignorant to the disorder, but I wanted to tell you I'm glad that you finally know what is causing the pain and that I'm sorry that you're in so much pain. I hope that your doc fixes this soon.

Melly

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I have TN too. In my case it's not autoimmune but rather seems to be another component of NCS/POTS. It's the same region of the brain the can start all of the "misfiring". Many people who have migraines (whether they know it or not) have at least in part, a misfiring of the trigemminal nerve.

It can be started by the lack of, or rapid changes of blood flow throughout the brain (not the only cause but one cause).

Anyhow, Neurotin is one of the treatments. There are other meds as well. I'm taking a low dose of Nortriptyline (4mg). It's an anti-depressant but I'm on too low of a dose for that effect but they use it with pain as well because it works on the same region of the brain.

I would avoid surgery as long as possible. My understanding is that surgery will sometimes temporarily help but then another part of the brain will "retrain" and you could have the same problem again.

Good luck with the med trials. It make take trying several ones to get the right one for you.

Glad you got a diagnosis though

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  • 2 weeks later...

Hi, Rachel...I saw the show last evening on mystery diseases. They featured the story of a toddler who suffered from TN but it took several years until she found a specialist who could diagnose it. Finally her family took her again to an astute dentist who recognized the systems and put her in touch with a neurologist who was familiar with TN.

Perhaps you can get the information from Discovery Health!

Good luck!

Lois

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