Trigeminal neuralgia: the worst pain imaginable
Dick Tedford has suffered for more than 11 years with the condition
By Tina Snell, Staff Writer
Trigeminal neuralgia (TN) is a condition which affects the trigeminal nerve, the largest in the head. This nerve’s responsibility is to send impulses of touch, pain, pressure and temperature to the brain from the face area. It also assists in controlling muscles used in chewing.
TN delivers sudden and intense shocks of pain to the face, sometimes explained as electric-like.
It has been described as the most painful human condition in the world, a definition which Dick Tedford of Little Falls agrees with. He contracted the disease in 2001.
“It began in my jaw area,” he said. “I was golfing when the first shock hit. I thought it was an awful toothache.”
Tedford said it was equivalent to having a 110-volt shock hit his face with pulses, like lightning strikes.
“It is the worst pain there is,” he said. “It’s called the suicide disease because before there was medications to help, people just couldn’t handle it.”
Tedford said he never did contemplate suicide, but he sure would have done almost anything to make the pain end.
The attacks may only last a second or two, or up to about 20 seconds. But, they may repeat over and over. Talking, brushing teeth, chewing, drinking, kissing or even a breeze may trigger a TN attack.
While TN is not fatal, the fear of the next shock of pain is enough to incapacitate a sufferer. As time progresses from the first incident, the pain may become more severe and more frequent.
After his first episode, Tedford went to his dentist, who, luckily for Tedford, knew of the disease. The dentist sent him directly to a neurologist.
Tedford’s wife, Pat, said her husband was given 100 millegrams of cabamazepine, an anti-seizure drug, beginning in the fall of 2003, which helped reduce the number of attacks.
“That worked for about four years,” she said. “Then in November 2007, he had a bad attack that was so painful, he couldn’t brush his teeth for a few days.”
The first time Tedford experienced TN, he had not retired from trucking yet. He said he never had a fear of having an episode while driving.
“I am able to tolerate a lot of pain, but the anticipation of when it would happen again was hard. I would pull the truck to the side of the road and wait until it was over,” he said.
Trigeminal nerves start in the trigeminal ganglion on each side of the head, and divide to spread in three directions: to the eyes and forehead, the nose and cheek area and the jaw area. While Tedford’s left side was affected, it more often affects the right side. It also affects women more often than men and it almost always affects only one side of the face.
A magnetic resonance image (MRI) showed everything in Tedford’s head to be OK.
In April 2008, Tedford’s medications were changed to include neurontin, another anti-seizure drug when the pain returned. The new drug kept the painful attacks at bay until February 2009.
In May 2009, while taking the neurontin nine times a day, the TN again returned and nothing seemed to help. Tedford endured the painful pulses until he went to the Mayo Clinic in December 2009.
A theory of TN’s cause is the myelin sheath which protects the trigeminal nerves is rubbed off by a nearby blood vessel’s pulses. Another theory is vascular compression where the trigeminal nerve enters the brain may be damaging the myelin sheath. Either could result in the shocks felt by sufferers of TN.
“Dr. Bruce Pollock gave me three options,” said Tedford. “One was a procedure with a gamma knife, or laser. Another was macrovascular decompression (MVD) and a third was glycerol injections into the trigeminal ganglion. I chose the gamma knife.”
Tedford’s head was placed in a frame, similar to a halo, which prevented any movement. The doctors determined the exact location of the nerve and blood vessel that was affected and used a laser beam to zap the area for about 40 minutes. This was supposed to numb or damage the offending nerve, thus eliminating the pain.
“But with me, the blood vessel was on top of the nerve and blocking the laser beam,” said Tedford. “The procedure didn’t work. The TN continued when I returned home.”
The Tedfords returned to the Mayo Clinic in May 2010, and were told the laser procedure was no longer an option. Tedford opted for the glycerol rhizotomy for his second procedure. With that, a needle was inserted through his cheek to the trigemial ganglion. It was filled with glycerol to block all three nerves.
“The left side of my face is now numb all the time,” he said. “Half my nose, half my teeth, everything on the left side. The muscles are not affected, so there is not any noticeable difference in my face.”
The big drawback to that is making sure there is not food left in his mouth when he is finished eating. He is unable to feel anything.
The glycerol treatment worked for two years and during that time, Tedford was weaned off the neurontin.
“But almost two years to the day after that, Dick got a shock near his left eye,” said Pat. “But so far, he’s been OK until now. In fact, when he’s busy with a project, it seems he has less shocks.”
The shocks of TN continue, but Tedford said the pain is blocked by the numbed nerves.
“I am mostly pain-free and took no medication for two years after the glycerol injections until recently, when several episodes occurred,” he said. “They said the glycerol would last about two years, and it did.”
Tedford said the pain started in his jaw 11 years ago and really never moved to other areas in his face. Typically, pain shoots from the corner of the mouth to the angle of the jaw, then to the eye area.
TN has no cure.
The Tedfords attend a TN support group which meets about six times a year in St. Cloud. The group brings in speakers to talk about different aspects of the disease and what people can do to manage the pain.
“It’s good to know others with TN,” said Tedford. “We can discuss procedures and learn what has worked and what has not. We are there to learn all we can.”
A book the Tedfords suggested for those suffering with TN is “Striking Back” by George Weigel and Kenneth Casey, M.D. They said it is full of good information about the disorder; a Bible for TN suffers.
Those who would like more information about TN or the support group maycall the Tedfords at (320) 616-5767.