Member
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Join Date: Oct 2009
Location: Pennsylvania
Posts: 131
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Member
Join Date: Oct 2009
Location: Pennsylvania
Posts: 131
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We were traveling west from Pennsylvania to a conference and stayed for the night at a motel. In the morning we ate breakfast before getting on the road again, and while chewing a bagel, I had a lightning bolt of pain hit me on the left side. Over the next few days I got more of them while eating, so I started to chew very slowly and carefully. Shortly after that we were camping in an RV at a music festival. I was still having trouble when I ate and was choosing food that didn't require hard chewing. One night I was reading in bed and suddenly had a series of lightning bolts for no apparent reason - later I realized it was because a breeze was hitting my face, but at the time I had no clue what was causing it. That was very scary because I could control chewing but I had no control over this unknown cause. I think I had already seen my dentist for a routine cleaning and he had said it wasn't my teeth causing this occasional problem but he didn't know what the problem was (he hadn't heard of TN). So after the camping trip I saw my internist. He suspected it was TN right away but needed to run some tests to rule out other possibilities. By the end of that week, the pain had escalated to constant, excruciating pain and a late night trip to the emergency room for pain meds. The next morning he put me on Tegretol but I had to build up the dose. The first pill took away the pain within a few minutes but maybe 8 hours later it would be back full force in an instant and I couldn't even finish what I was doing - all I could do was to go to bed. Amazingly I was able to sleep. The second I'd wake up in the morning the constant pain would be back - till I took another dose of medicine. Once I was able to built up to the dose I needed, I was out of pain.
That was 20 years ago, in the spring. After many years of meds and two outpatient surgeries, 3 years ago I had a MVD and have been pain free and off all TN meds since then.
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Jean
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