What It's Like to Live with One of the World's Most Painful Disorders

Illustration by Alex Jenkins

There's a good chance Miranda Kirsch has one of the most painful dating stories. When she was 18, she and her new beau Steven went to the movies to see Interstellar. Steven loved it, turning to Kirsch to get her every reaction.

"He's like, 'Aha, that's so great!' And I just kind of smiled," Kirsch told me. What she didn't tell him was that her face was burning with excruciating pain—"like a hot rod being stabbed in your eye while your face is being burned off with chemicals"—triggered by the movie's flickering lights and explosions.

This wasn't a random occurrence. It was a feeling Kirsch had felt off and on since she was three years old—a symptom of trigeminal neuralgia, a chronic pain disorder that's considered to be one of the world's most painful diseases.

Kirsch, now 20, is part of a small club of young people living with the disorder, which more commonly affects people over the age of 50. Although it's excruciating to live with at any age, the absence of a cure makes it especially disheartening for young patients who can expect a lifetime of pain ahead of them. Going through puberty, trying to date, or even just studying for the SATs can be hard enough without having jolts of knife-like pain pulsating through your face.

"Growing up, I was bullied a lot because of it," Kirsch told me. "The kids would be like, 'Why is she screaming?'"

Trigeminal neuralgia involves damage to the trigeminal nerve—the one used for eating, talking, and other facial functions. The nerve loses its protective covering, essentially acting like an exposed wire. Because TN is such a rare disease, with only 12 out of every 100,000 people diagnosed each year, doctors are still unsure why this happens in some people and not others.

What they do know is that simple activities like brushing one's teeth, putting on makeup, or sometimes doing nothing at all can set off shocks throughout the face, in the forehead, cheeks, jaw, teeth, and gums. Others experience a constant burning sensation, and some feel both.

Patients have likened the pain to repeatedly being stabbing with a carving knife, getting hit by lightning, or having a screwdriver jammed in your eye. Dr. Mark Linskey, a neurosurgeon who specializes in TN, told me the sensation is "worse than childbirth, if you ask any woman who's done both."

And if you google it, you can easily find TN's morbid nickname: the suicide disease.

"I had to turn to my mom and ask what suicide was," said Katie Rose Hamilton, who heard the nickname directly from her doctor when she was diagnosed at age 11. "It wasn't a fun night."

"There are people who commit suicide over trigeminal neuralgia, but they're rare," said Linskey. "We lose more patients during their course with trigeminal neuralgia from drug overdoses than anything else."

Whether those overdoses are intentional or accidental is unclear. Many of the drugs prescribed to TN patients are anti-seizure medications, which can affect memory, causing some to lose track of how much medication they've taken.

What is clear is that the medication, while helpful (and sometimes life saving), can have immediate effects on patients' daily lives, profound and small. Even when Jamie Parroco, 27, takes the lowest possible dosage, it's still enough to affect her lifestyle.

"Life before TN was really exciting," Parroco told me. She'd just finished her master's degree, gotten a new job, and was enjoying a vacation in Italy when she first felt the pain of TN. Now, the fear of another attack is a constant stress.

"It just completely turns my social world upside down and my social identity," said Parroco. "I don't want to be that sick person."

Arguably more importantly, she's had to put future plans on hold: Her doctors have told her she can't start a family while taking her medication, even though having kids has always been part of her plan.

The side effects of medication, and the need for higher and higher doses to dull the pain of TN, lead many to consider surgical options. The most effective procedure has an 80 percent success rate, but the risks—infection and excessive bleeding, to name a few—are substantial.

For Hamilton's parents, surgery became an increasingly obvious choice when their daughter's medication was so strong she couldn't count to ten—a problem when you're an 11-year-old.

So they took her to one of the most well-known pediatric neurosurgeons, Dr. Ben Carson. (Yeah, that Ben Carson.) At first, it worked—but like many patients, the pain returned eight months later. A second surgery has made her pain-free for the last two years.

"I'm free to ride roller coasters and jump on the trampoline," said Hamilton, now 16. Despite a small amount of phantom pain as the nerve heals, Hamilton feels like a normal teenager, running around outside and riding on her skateboard. Although she's optimistic the full pain of TN won't come back, she's aware it's still a possibility.

Kirsch also decided to have surgery this year. She celebrated being pain free with the same enthusiasm (she also jumped on a trampoline), but a month afterward, the pain came back.

"It was soul crushing," Kirsch told me. "I think I cried for two days straight."

The complications from surgery have prompted a nonprofit volunteer organization, the TNA Facial Pain Association, to find a cure by 2020. The project, led by the Facial Pain Research Foundation, consists of more than 30 scientists working on a range of solutions, including injections to fix genetic causes, insert therapeutic cells, and repair the nerve's protective covering. These advances could have important impacts on other neuropathic pain conditions, too, according to the association's trustee, Michael Pasternak, a former TN patient recently appointed to the Interagency Pain Research Coordinating Committee, a federal advisory committee under the National Institutes of Health.

"When we fix the trigeminal nerve, we'll be able to fix phantom nerve pain," said Pasternak, referring to neurological pain not caused by an outside stimulus, and most commonly associated with phantom limb pain. "We'll be able to fix nerves that have been damaged by chemotherapy."

Until a cure is found, however, the young people who suffer from TN continue to face the challenges of their disease.

"Being 27, this is the time of your life," said Parroco. "But so many things change. It puts a stop on a lot of those plans. You have to re-arrange them."

Follow Áine Pennello on Twitter.

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