Trigeminal Neuralgia Community
trigeminal neuralgia
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trigeminal neuralgia

i believe that i have trigeminal neuralgia but i do not know  what tests are done to confrim this . can you tell me what tests have to be done so i can ask my physician to ruin these tests or demand they run them ? i have been so sick for so long . i literally have been to  25 -30  doctors to find out what is wrong with me . and every test comes back negative except that a test came back positve for fungal aspergillosis .but they do not say anything about treating it . i am at the end of my rope.
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Avatar_f_tn
Hi callie,
Unfortunately, there is no test that will prove you have TN.  Mostly, doctors run a battery of tests to rule out everything else.  There is a thin-slice MRI - called "Trigeminal Protocol" that will look for blood vessels/veins compressing the TN nerve -- however lots of people have a compression that does not show up on the MRI.  Doctors also use MRIs to rule out tumors or Multiple Sclerosis that could be causing your pain.
A good idea is to keep a pain journal -- where does the pain happen, how long does it last, when does it happen, does anything seem to trigger it (i.e. - brushing your teeth, eating, putting on makeup, washing your face), what does the pain feel like (electric shocks, jabs, burning, etc).  This will help your doctor diagnose the problem.
If you have access to a large teaching hospital that has a Facial Pain specialist -- these are doctors that see people with facial pain every day -- these kind of doctors are the best to help diagnose exactly what your problem is.
TN is a rare disease -- lots of doctors have never actually treated a TN patient and don't know what to do for you -- so don't be surprised that you have to search out a doctor that can help you.  I went through 5 different types of doctors before I found #6 -- the Facial Pain specialist that helped me.
If it IS TN, the doctor will probably prescribe an anti-convulsant drug that's normally used for epilepsy such as gabapentin/neurontin, tegretol/carbazepine, or trileptal/oxcarbazepine.  A doctor who is knowledgeable in TN will slowly wean you onto the drug -- slowly increasing the dosage until the pain is controlled.  Follow your doctor's instructions with these types of drugs.
In the meantime, some things that work with facial pain are either heat (microwaveable beanbags are good) or ice [everybody is different, some like heat, some like cold]; Oragel if you're having pain in the mouth area or are unable to eat/chew because of the pain.

Wishing you all the best -- and I hope it isn't TN, because there are other diseases that are easier to treat!
Take care,
Nancy
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Avatar_m_tn
What type and location has led you to believe you have TN? You mentioned you have been 'sick' for a long time but didn't expain your sickness.Blessings-Dan
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