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Trigeminal Neuralgia Message Board

Atypical TN...

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Old 09-20-2013, 09:50 PM   #1
Join Date: Feb 2013
Location: Seattle, WA
Posts: 2
lwolfe26 HB User
Atypical TN...

I've been living with this for 2 years so far. I had an MVD back in April which helped 100% for 8 weeks before the pain started creeping back to full bore.

There are 2 hospitals where I live that do peripheral nerve stimulators, but they're not known to my current neurologist+neurosurgeon+doctor. I called them to get a referral and they said I have to have a referral from my neuro which they'd look at and if the doctor thought they could help they'd contact me. I begged my neuro for a referral which they said they would send.

I haven't heard anything in a few weeks.

After MVD the neuro said there wasn't really anything else to do and started me on oxycontin and percocet in addition to the 100mg nortriptyline and 120mg cymbalta I'd already been taking. I was on oxcarbazapine 1200mg prior to MVD but weaned off it afterwards and haven't restarted.

Nortriptyline was my drug that worked the best, but after maxing it I've only had mild results from cymbalta.

When I went to an ENT they thought I had Eagle's syndrome from the location of the pain in the back of my throat, but the CT showed the syloid wasn't long enough to qualify for ES.

There's a triangle of pain from my jaw across my cheek to the eye and down the other 2 branches of the T nerve, then from the inside of the eye to back behind the left nostril wall, and back to the roof of the throat by the tonsil. Often it feels like razors cutting my face apart and burning, searing, ripping, tearing, boring pain and crushing pressure.

The first place I went to over a year ago had diagnosed my severe deep eye pain as "Tolosa hunt syndrome" after an MRI and spinal tap, but the pain never went away after the steroid treatment. I moved to the neurologist I got a second opinion from as he was much better, but now he's just throwing opiates at me and I'm still in my 20's, not something I want to be on.

What else is there?

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