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I would like to hear from anyone else who has been diagnosed with atypical TN, and I would like to know what their symptoms are and what treatment has or has not worked for them. I was diagnosed in June 2016 with TN. The onset was text book, electric shock like pains with immediate relief with carbamazepine. Situation got worse when following my doctors orders on my initial prescription I increased the drug after 5 days and again after the next 5 days. Then began 3 months of roller coaster of facial pain (rarely the electric shock like pain, but more like zaps/pinching, burning, soreness that ranged in pain degrees) and increasing the drugs and trying other drugs. I had two very bad reactions to carbamazepine and to oxcarbazepine. I am currently on gabapentin 100mg twice a day and nortripytline 10mg at night. I am coping, but I have pain most of the day. Sometimes "zaps", generally just a soreness (like someone just punched me in the face) and some burning. At one time I was on 2700 mg of gabapentin and it didn't really help any more than the low dose I am on now....and the side effects were horrible. I am on the list for MVD likely in May 2017...but I sure I will reevalutated before the surgery. My MRI does not show a compression only the artery and nerve parallel to each other. Although I am coping with the pain it is exhausting. Based on what I have read I am wondering if the MVD will help...the neurosurgeon is hoping to to find the compression when he does the surgery.
I would appreciate hearing from anyone else who has ATN. Thank you
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