Chuck Carlson

Battle Creek Enquirer

Dawn Monarch is ready to kill herself.

She's been ready for months, years really, especially when the pain in her head rolls over her again like a wave. That's when she believes the only option left to her is suicide.

Then she thinks of Austin, her 16-year-old grandson who is the light of her life, and she thinks of her other grandkids or her adult children who know what their mom is going through but are powerless to help.

And, for one more day, she chooses to live because she just can't accept the alternative. Not now. Not yet.

"I'm too chicken," she says, and the tears come to her eyes again. "But I can't take this anymore."

She pauses, deciding whether she should say what she had to say.

"I've got a vacuum hose and duct tape in my car," she said. "One day."

It really began in 1991 when Monarch, a mother of four who held a job as a nanny ("I was a great nanny too," she said) had major dental surgery.

Sometime after the surgery, Monarch still isn't sure when, she developed what she thought were migraine headaches that got worse over time.

Finally, in 1995, she was diagnosed with trigeminal neuralgia, a chronic pain condition in which the trigeminal nerve, located at the jawline and which carries sensation from the face to the brain, is damaged.

According to the Mayo Clinic website, in mild cases, such routine movements like smiling, talking, yawning and brushing your teeth, can cause massive jolts of pain. But they normally subside and the condition can be controlled with medication.

But that's not Dawn Monarch's situation. She not only has the typical, milder form of the ailment, but atypical, much more rare and far more painful.

For Monarch, everything that touches her face or requires her to use the muscles in her face is explosively painful.

"Have you ever had battery acid thrown at you?" she asks. "Well, I have, and this is like someone throwing battery acid on my face."

She can't brush her teeth or comb her hair properly anymore. When a piece of clothing brushes her jaw, the pain almost knocks her to her knees. It's worse in sunlight but anything can bring on the pain. She even has to cover her face with a scarf to avoid wind, even in the summer. She weighs 93 pounds now because she can't eat properly.

"I can't even touch my chin," she said.

Some days, she says, are better than others but they are growing fewer and fewer.

"My whole life is a mess right now," said Monarch, who is only 57. "Physically, mentally, emotionally, spiritually."

She knows her life will never be what she wants it to be and she knows the pain will always be there. All she wants now is way to cope with the life to to her.

"I don't know what the answer is," she said. "I just want to find a doctor who does."

The course of trigeminal neuralgia is extremely variable. Some people have relatively mild symptoms that go on for a few weeks, whereas in others the pain is described as among the most excruciating pain known, and can go on for months. After a time (weeks, months, years) of no pain, the symptoms may recur.

It used to be called the suicide condition because the pain from trigeminal neuralgia was so bad and so constant that relief could only be found in death.

In truth, the dramatic label, first coined in the 1890s, wasn't supported by facts, especially as other options, including surgery and pain medication, improved over the years.

But for many people, like Dawn Monarch, medication isn't a solution.

"TN is called the worst pain known to man," said Tim Guith, who formed a trigeminal neuralgia support group in Troy in 1997, a group he says has seen more than 1,000 members in that time.

He says as far he knows only two members of the support group have committed suicide over the years and there may have been underlying mental issues involved.

"They had mental conditions over and above TN," said Guith, who developed the disease after root canal surgery decades ago and beats back the pain with 50 milligrams of morphine every day. "Did they have it before TN or was it because of the pain? I have to assume it was because of the pain."

Monarch has corresponded with the support group for years and Guith knows her situation. In fact, he even put her in touch with his oral surgeon, Dr. Warren Vallerand, in Novi several years ago for help.

But the commute was too much and, eventually, Monarch found doctors in Battle Creek who could help her get medication that would control the pain.

She's currently taking Dilaudid for the pain but she's running out and she can't get refills because she says she can't find a new doctor.

Guith said this isn't unusual because doctors are cautious about prescribing large amounts of opiates due to legal concerns.

"It's very difficult to get physicians to treat it because the DEA (Drug Enforcement Administration) and state medical board are hounding them," he said. "There are doctors who get in trouble for prescribing it to themselves or it ends with dealers on the street. It makes it difficult for us who have are in pain medically."

Dr. Melanie Novak, who has treated pain management in Battle Creek for two decades, said doctors aren't necessarily fearful to prescribe pain meds, they just want to make sure they are taken by the right people. And she says the DEA crackdown is necessary.

"We have something like 4.6 percent of the world's pop and we use 99 percent of the world's hyrdocodone and 86 percent of the world's controlled substances," she said. "More people are killed by prescription pain medication than auto accidents. Everybody's got (narcotics) in their purse. I'm not saying people who need pain meds will have them taken away, we're just being more responsible."

Novak says she's treated a number of TN patients over the years and most get better relatively quickly.

"Patients generally respond well but it usually takes a year from the onset," she said. "But with medication, nerve block injections. surgery on trigeminal nerve, most patients do well."

But Monarch insists that's not her case.

She said her physical pain has now morphed into mental problems too and she has grown fearful and paranoid that no one can, or will, help her.

She says doctors around the state have let her down, have ignored her calls, have refused to treat her and she insists she's at the end of her rope.

Guith, who hasn't spoken to Monarch in months, said he understands only too well what she's going through. But he also said he's not sure how to help.

"She knows I'm out of answers for her and it hurts me to say that," he said. "But this is a problem all around the country. People are having trouble getting doctors to prescribe opiates."

On Thursday, Monarch did meet with a counselor at Summit Pointe, a Battle Creek mental health facility, but on Friday her agitation returned.

"I don't know the answer," she said. "I don't know who to trust anymore."

She hopes to find answers soon to the physical and mental pain that continues to wrack her. But she's not sure how much longer she can wait.

"I have things I want to be excited about," she said. "I want to live but I just can't do this anymore."

Chuck Carlson is editor of Connections. Reach him at 966-0690. Follow him on Twitter: @ChuckCarlson4

About trigeminal neuralgia

• Trigeminal neuralgia, sometimes called tic doulourex, is an inflammation of the trigeminal nerve that causes extreme pain and muscle spasms in the face. The pain, described as feeling like an electrical shock, often affects only one side of the face. The "shocks" may last a few seconds or as long as a few minutes, and often come in quick succession. The pain can be incapacitating, and patients have reported considering suicide because the pain is so severe.

• The condition occurs in 1 in 25,000 people.

• The trigeminal nerve originates at the base of the brain. It has three branches that control sensation and movement in the face. The precise cause of trigeminal neuralgia is unknown, but it's believed to be a blood vessel pressing on the trigeminal nerve as it exits the brainstem. The compression is believed to cause the protective coating around the nerve to wear away. Sometimes people with multiple sclerosis report trigeminal neuralgia symptoms, and tumors can also cause the compression.

• Several treatments are available for trigeminal neuralgia, including:

■Anticonvulsant medications, which block nerve firing and disrupt pain signals.

■Tricyclic antidepressants, which block pain when it's described as contant, burning or aching. Typical pain medications, including opioids, are usually ineffective against neuralgia.

■Surgery to partially or completely sever the nerve fibers that control sensation in the part of the face affected. In other surgical procedures, doctors can implant tiny sponges to lift blood vessels away from the nerve and eliminate the compression that's causing the pain.

To learn more about trigeminal neuralgia, visit www.endthepain.org.