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I was diagnosed with TN 12 weeks ago. Woke up in the AM with a sore face that night the electric shock like pains started and came back when I woke up in the next morning. Family doctor put me on carbamazepine low dose...it took the pain away immediately, then he doubled then quadrupled the dose all in the initial prescription and in less than 2 weeks. I was a zombie so he took me off this drug and put me on gabapentin. I then went through 10 weeks of increasing the meds every 5 - 10 days for break through pain till I reached 2700 mg a day. Then he added carbamazepine again and a week later I had hives so he gave me prednisone, and then 3 days later I had more hives, was very very sick, BP was extremely high and I had lots of sores in my mouth. He took me off the carbamazepine (allergic reaction to this drug) and over 3 days took me off of the gabapentin and started me on lyrica. The lyrica seemed to work initially but again break through pain. I saw a neurosurgeon yesterday. My MRI shows the blood vessel near the nerve, but it is not a clear compression. I have facial droopiness, numbness and one side constant and intermittent facial pain plus the electrical shock like pain. Diagnosis is uncertain....could be atypical TN or it could be trigeminal neuropathy. The specialist said I could continue with the lyrica (but I weaning myself off of it, because I am still at a very low dose) and to take oxcarbazepine. 20% chance I will be allergic to it because of the allergy I already have to carbamazepine. This is a little scary. If the Oxcarbazepine works then this indicates TN (personally I thought I already had this with my initial treatment of carbamazepine). He did not tell me what to do if the oxcarbazepine does not work! I will done with the lyrica by tomorrow, Sunday. I see my family doctor on Monday afternoon and will discuss all of this with him and likely start the oxcarbazepine on Monday night...with some prednisone handy! Has anyone else had this experience? Has anyone else had TN/symptoms where one side of your face gets sore from cool breezes. Oh the other symptom I had at onset and again more recently is right under the jaw pain when swallowing...I would be really interested in hearing if anyone has had this.
I really need more info and would appreciate hearing about anyone else's similiar experience. Thank you
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