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Trigeminal neuralgia: What helps stop the pain?

Brain & Nervous System | Last Active: Jul 13 12:26pm | Replies (157)

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Profile picture for kathleenintexas @kathleenintexas

I am so sorry for the pain you are in. Trigeminal neuralgia is said to be the worst pain known to humanity. I developed TN after a case of shingles. The TN attacks sent me to my knees screaming and crying in pain. 1800 mg of gabapentin a day stopped the intense attacks, but I feel the opthalmic part of the trigeminal nerve, like it is moving, several times a day, but painlessly.
The microvascular decompression (MVD) surgery is a cure for TN, but only when the TN is caused by the compression of the nerve by a blood vessel. I believe an MRI can show the compression and should be read by a neurosurgeon, not a neurologist, because a surgeon is more experienced usually.
As I understand it, the shingles virus can damage the trigeminal nerve as it moves along the pathway. This is what happened to me, so it is not a compression, so MVD would not help.
I actually had an MVD in 2005 for a condition called hemifacial spasm where there was a compression on the 7th cranial nerve causing the face to spasm. I had the condition for 4 1/2 years and the surgery cured me. I went to Pittsburgh from Texas to have the developer of the MVD, Dr. Peter Janetta, to do the surgery. He actually supervised as there were multiple MVD surgeries going on at the same time and he moved from operating room to operating room. Dr. Janetta first operated on a TN patient and cured him. He continued to operate on TN patients until he began speculating that hemifacial spasm might also be the result of a compressed nerve and began curing that condition with the MVD surgery.
Have you been on the medications for TN like oxcarbazepine and others? I tried that one, but did not want to be a zombie, so went back to gabapentin. With how bad your pain is, being a zombie might be preferable.

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Replies to "I am so sorry for the pain you are in. Trigeminal neuralgia is said to be..."

I had surgery in January for my TN. I WAS NOT A CANDIDATE FOR COMPRESSION RELIEF. SOT I HAD THE OPERATION CALLED DREZ. THIS IS WHERE THEY CAUTERIZE THE NUCLEI OF PART OF THE TN NERVE. I NO LONGER HAVE THE TN PAIN, HOWEVER, THEY HAD TO MOVE ANOTHER NERVE TO GET TO THE TN SO I LOST FEELING IN PART OF MY LEFT SIDE. I WAS IN REHAB FOR 4 WEEKS. I AM MUCH BETTER, BUT SUFFERING FOMR NUMBNESS IN MY LEFT ARM AND HAND. I NO LONGER HAVE THE PAIN IN MY FACE, BUR THE LEFT SIDE OF MY FACE IS A BIT NUMB. I DO NOT HAVE THE EYE PAIN AND MOVEMENT, BUT MY EYELID IS STILL A BIT SWOLLEN. THIS OPERATION HAS BEEN USED SINCE THE 1930'S. IF YOU WANT FURTHER INFO, MY NEUROSURGEION IS DR. NEIMAT, UNIVERSITY OF LOUISVILLE NEUROSURGERY DEPT. GOOD LUCK