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Trigeminal Neuralgia
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Trigeminal Neuralgia

My husband was diagnosed with Trigeminal Neuralgia about a year ago. He is steadily getting worse. His doctor has recommended Carbatrol 300 mg 3 x a day. Eating is now a severe problem he is losing weight, and his sytems are becomming debilitating. He is 57 years old, very healthy otherwise. Right now his Doctor is talking about cyberknife surgery. Has anyone had this procedure and did it help? He tried all other alternative therapies from acupunture, chiropratic sessions, untrsound with ointment etc.with no substantial change. Any information would be greatly appreciated.
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Does his doctor have experience treating patients with Trigeminal Neuralgia/facial pain?  If not, find a teaching hospital in the nearest big city -- one with a "facial pain" clinic.  These doctors have daily experience treating facial pain.  

There are many different types of medication. I was on Gabapentin from my internist - didn't work, the next doctor was my neurologist who switched me to Tegretol - also didn't work.  Finally I located a facial pain specialist who switched me to Trileptal and slowly we got the dosage high enough that the pain was under control.  Every person suffering from TN is different -- and different meds work for different people.  You need a specialist who knows how to deal with TN.

There are many different surgeries/procedures.  It all depends on what's causing the TN -- a tumor, a blood vessel or vein pressing on the nerve, MS, dental procedures or injuries.  Again, you need a specialist who can figure out what the best procedure/surgery is for your husband.

I had a Gamma Knife -- I have MS and don't have a blood vessel, vein, tumor, or injury causing the TN.  It worked fairly well, but 2 1/2 months later, I'm having mild breakthrough pain.  

As for weight loss and not eating -- when I was in severe pain with my lower and upper jaw, I used Oragel to numb the entire left side of my mouth and ate soft foods using the right side of my mouth.  I also know of people who lived on liquid diet drinks - like Glycerna (spelling?) and others like that.

A great online support group is:  http://www.fpa-support.org/

Good luck and I hope your husband finds a solution to his pain.

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