Trigeminal Neuralgia Community
Diagnosis
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Diagnosis

I am new here and I have a question... I was diagnosed with trigeminal neuralgia about a year ago.  I was wondering if the doctor can diagnose this on symptoms alone.  Do they need to run any tests to diagnose?  The reason that I ask is that I am currently seeing a new neuro and when I told him that my PCP diagnosed me on my symptoms, he looked at me funny.

I also am wondering if therapy for this is long-term.  I was prescribed tegretol which helped tremendously!  But was only given it for 2 months, which at the time was fine because it seemed to go away.  I just recently, in the last month and a half, started having problems with this again and am wondering if I need to call the doctor for some more medication again.  Do I just need it for a flare-up or all the time?

For supposedly having this for a year, I really know nothing about it :o)  Any information would be appreciated.

Thanks,  Sarah
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Avatar_f_tn
I have TN also, and the info I'm giving you is what I've learned over the last 2 years -- you should doublecheck this with your doctors.
As far as I know there's no real test that will diagnose TN, it's basically a diagnosis of ruling everything else out (my internist did all kinds of blood tests and a brain MRI (done to rule out a tumor or MS)).  Mostly it's the description of symptoms that you tell your doctor that will help them diagnose you.
It's a good idea to keep a pain journal -- when it happens, where it happens on your face, what it feels like (electric shocks, intermittent, constant, burning, etc).  It makes it easier when you discuss it with the doctor.
TN can relapse/remit -- meaning you can have some time with no pain, but then it comes back.  Unfortunately, from everything I've read, it continues to come back and can get worse with time.
My facial pain specialist is a firm believer in using the medications to stop the pain.  He told me that the nerve can "learn" that these intermittent pain shocks are "normal" and you don't want the nerve to do that.  So if you're having pain again, you should go see your doctor and get back on the meds if that is what they prescribe.
If you want to learn more about TN -- a great resource is the book "Striking Back" -- you can get it on Amazon.
And don't be afraid to switch doctors -- this is a rare disease and a lot of doctors don't know how to treat it.  I went through 5 doctors before I found #6 who has helped me tremendously.  He is a Facial Pain Specialist -- he works at a large teaching hospital.  He sees people with Facial Pain every day.  
Prior to him I saw my dentist (my pain started in my teeth), an orthodontist (to rule out TMJ), an EMT (my first electric shock was up the side of my nose) to rule out sinus problems, my Internist (who diagnosed me, but never had a TN patient before and didn't know enough about it), my MS neurologist who also was no real help.  Then I finally was referred to the Facial Pain Specialist.
Hope you find your pain relief!
Take care,
Nancy
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485259_tn?1326312778
Thanks for being here. As always, you provide such great and thorough answers!
I just learned something new today myself! Good advice on the nerve learning the pain. I forgot about that. I tend to 'suck it up" and avoid the drugs until I can't take it anymore. I should stop doing that. Thanks for the reminder. I'm only going to pay for it in the long run aren't I...
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Avatar_f_tn
I know where you're coming from -- with the "sucking it up" scenario.  I tend to do that myself, then my pain doc repeats his message about sensitizing the nerve and tells me to call him "immediately" when I experience pain.  I definitely don't want my nerve to learn any more bad habits than it already has. LOL!
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