Living with the CRPS Or ‘Suicide Disease’


If you were to cross Tim Haynes on the street, you would see a tall, lean man in his early 50s with a clean shaven face and salt and pepper hair. There’s a good chance he’d be wearing a flannel and blue jeans — a uniform typical of a Midwestern contractor — and would give a “How do you do?” head nod.

But beneath the surface, Haynes is suffering from a disorder so intolerable it is sometimes referred to as “the suicide disease.” The condition is called trigeminal neuralgia, and it’s said to cause the worst pain known to man.

It occurs when pressure is put on the trigeminal nerve — the largest cranial nerve. This leads to extreme, sudden, excruciating facial pain in the areas where the branches of the trigeminal nerve are distributed — lips, eyes, nose, scalp, forehead and upper and lower jaw.

Those with the disorder say it is so tortuous it drives them to their knees. They have described it like being slashed with razor blades. Like a searing hot knife ripping through your jaw; being constantly jabbed with a cattle prod; or like you’re face is on fire. And once an attack starts, there’s nothing you can do but endure it, which is why some take their own lives. They see it as the only way to end the pain. This September marked six years since Haynes was diagnosed. “You can’t see it. You can’t tell it’s there until you live with it,” Haynes said. “It’s a life-changing, debilitating disease, and you wouldn’t want your worst of the worst enemies to have it. … And I don’t have it nearly as bad as a lot of people that have it.”

According to the Facial Pain Association, it happens when the lining of the trigeminal nerve wears down and comes into contact with a normal blood vessel — such as an artery or vein. This puts pressure on the trigeminal nerve, causing it to induce pain. For Haynes, the nerves affected are in the lower area of the right side of his face.

“When an attack actually happens, it feels like you’ve been placed into an electric chair for about five minutes. It feels like your face is being scraped off, acid being thrown on it, and it’s a burning, searing sensation that will travel on my whole right side,” said Haynes, of Kankakee. “And if the attacks are severe enough, it feels like it goes all the way down to my right leg. I would swear I was on fire.” Haynes said attacks are sporadic and can be set off by any number of things: shaving, using a Q-tip, brushing his hair or teeth, blowing his nose, smiling too much, scratching, even yawning. The cold weather presents a whole new set of problems. If the air is below 40 degrees, a breeze can set off an attack. He’s stopped whistling and can’t kiss his wife, Patti, goodbye each morning before going to work for fear it could spark an attack. Haynes experiences one every three or four weeks. They can last anywhere from a minute to hours. But many with TN feel an almost constant sensation throughout the day — that of an ice pick jabbing into the side of the face. Compared to a full-blown attack, Haynes said, it’s nothing. Haynes said eating is one of the biggest difficulties. One night, it took him two hours to get halfway through a piece of chicken breast. Those with TN often suffer from malnutrition and dental disease because they do whatever it takes to avoid the onset of pain. Since being diagnosed, Haynes, who’s always been slender, has dropped 25 pounds. “Eating my meals most of the time, I’ve learned to take tiny bites and just swallow them. There’s no chewing. Most people chew kind of oblong; I have to try to go completely up and down without going side to side,” Haynes said. “Struggling with that and to evade the pain triggers, you’re totally exhausted after it’s all done. It felt like I’d worked all day long.”

In the first year and a half with the condition, Haynes hardly ever ate outside his own home. He wouldn’t visit friends out of fear of them seeing him have an attack. He said his wife is the only person who has seen him have one, and it’s so hard for her to watch she often breaks down and cries.

“It’s horrifying to watch,” he said.

And when one strikes, all he can do is grab whatever he can and grip with all his might.

‘I remember the look on her face’

Trigeminal neuralgia is incredibly rare. According to the National Institute of Neurological Disorders and Stroke, 12 in 100,000 people are diagnosed each year.

Most people with TN first see a dentist because they believe it’s tooth pain. Haynes had two root canals before being diagnosed. The condition is not detectable and cannot be diagnosed with any test. Doctors have to just go off of what symptoms the patient communicates.

It was a long six months before doctors figured out what was going on with Haynes. When a doctor finally told him he suffered from trigeminal neuralgia, he remembers feeling ecstatic — finally a diagnosis. “But I remember the look on her face,” he recalled. That’s when she explained the condition and the long road ahead of him.

For those suffering from TN, there is no cure. Haynes takes anti-seizure drugs, used to block nerve firing, which can make attacks less frequent but don’t completely take away the pain. Over time, drugs may also stop working.

There are several surgeries that can be done, from damaging nerve fibers or even the trigeminal nerve itself to block the pain, to microvascular decompression, which involves opening the skull behind the ear, moving the artery compressing the trigeminal nerve and cushioning it with Teflon felt. Some patients have found relief, but none of the surgeries guarantee wellness. Sometimes, they actually can worsen the condition, which is why Haynes elects not to have surgery.

“I don’t know if the cure is better than the actual disease because one way or another, whatever I do, I have to live with the side effects for the rest of my life,” he said.

Searching for a cure

Haynes still continues to work as a contractor, though he has allowed one of his sons to take the lead of the family business. He leaves much of the roof work to his crew since an attack could cause him to fall. He said sometimes people mistakenly believe him to be drunk on the job because the pain can cause slurred speech. That’s when he has to explain what’s going on.

Haynes said there are good days and bad days. He was relieved when they canceled cable TV. His wife loves to cook and often had the Food Network on. Haynes began feeling angry and resentful watching people take a big bite into a juicy hamburger when it scares him to eat, fearing it will set off an attack.

Since free time leads him to dwell on the pain, he volunteers to do sign language for the deaf.

“I joined the sign language group about six years ago, and at first it was easier to talk with my hands,” Haynes said. “But sign language is so facial — only 30 percent is hand movement — but I still do it, and I actually teach the Bible to the deaf using their language. And I know what I’ve learned from the scriptures is that there is hope for the future.”

Haynes said a friend in Minnesota with TN joined a support group, and of the 10, two of them committed suicide in the past four months.

Cindy Ezell, a former Facial Pain Association board member who is diagnosed with TN herself, said the condition does not have to end in suicide — despite its reputation. The perception that most people can’t live with the disorder is discouraging and only gives them a grim outlook.

“A lot of these people [who have committed suicide] have another underlying issue,” Ezell explained. “A lot of times chronic pain will cause depression because the pain can be so bad.”

Suicide never has been an option for Hayes. Through religion, family and friends, he remains optimistic for the future. He’s gotten over his fear of visiting with friends and is relieved those close to him have done their research to understand TN, rather than fear it.

“Ultimately, yeah, I wish there was a cure now, not just for myself,” Haynes said. “I can tolerate it; I can deal with it. I have the support of my friends and family, and they encourage me that there will be a time where I don’t have to deal with this anymore.”