My experience with trigeminal neuralgia

Contributed by: Larry
Reviewed by: Evelyn Corsini, MSW, May 2010

Larry wants to learn about new treatments for his trigeminal neuralgia.

I have had Trigeminal Neuralgia for about 5 years.  My story is typical from what I’ve read.  I will have occasional periods of intense and unrelenting pain in my upper and/or lower right jaw interspersed with long periods of weeks or months with absolutely no pain.

The pain can go away completely and gradually return with “minor” episodes which get more and more intense, or, as happened recently, after several months with no pain, the pain can occur “out of the blue” and as intense as it ever has been, like an electric current.

My personal care physician told me about a nurse of his who had had a difficult time with TN.  His knowledge of the condition made me feel a bit better.  He prescribed gabapentin originally, which I was taking at the rate of 3600 mg / day at the peak of my worst episode, about 1 and a half years ago.  I asked to speak with the neurologist about alternatives, and especially about new treatments (gamma knife).  He said a better option was to switch to a different drug to see if that would help with the pain.  Before he did that, he set me up for an MRI, which did not indicate any obvious tumors or other specific causes for my condition.  He then prescribed baclofen, which I used in progressively higher doses until I just didn’t want to deal with the side effects anymore.  At that time, the pain episodes seemed to be subsiding on their own, so I backed off of both drugs.  In reality, nothing really dulls the pain that much.  When it’s at its worst, it still hurts just as much.

My worst pain seems to occur just before bedtime recently.  I am currently experiencing “minor” episodes and a constant ache that comes and goes with talking or eating, and with which I can live without drugs.  I will avoid taking the drugs until such time as the intensity and frequency increases significantly.  My experience and everything I’ve read leads me to believe that it’s inevitable, but I am fairly optimistic and can deal with the current situation.

I recently tried an herbal concoction, given by an acupuncturist, which had no discernable effect.  I have also read about an FDA-approved ultrasonic treatment option developed in Israel, and which has been tested with great effect on multiple TN sufferers, including two with MS.  I have asked for more information about the ultrasonic device, which includes a patch transducer that you can apply to the face, and includes a cell phone-sized controller.  If it’s not too expensive, I plan to give it a try.

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