When she wakes up each morning, Cheryl Orlet doesn’t know if she will be in too much pain to get out of bed. That is if she gets any sleep at all. Sometimes the pain from trigeminal neuralgia is so intense she can’t sleep.
The Mascoutah mother of three was diagnosed with the rare medical condition in May 2011.
“I literally just woke up with it,” Orlet said. “I woke up one day with ungodly pain. The way I described it to my doctor when I first had it was you could draw a line down my face, and it was just my entire right side. It was so deep. It was in the roof of my mouth and my inner ear; they just hurt so bad I would just walk the house at night and cry.”
Orlet, who is a nurse at Mar Ka Nursing Home in Mascoutah, had that constant facial pain for a solid two weeks. In one day, she visited the emergency room, her dentist and an ear, nose and throat specialist to try to get some answers.
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“None of them really had any answers,” she said. “One would say maybe it’s TMJ (temporomandibular joint); one would say maybe it’s this.”
She then decided to visit her family practice physician — Dr. Steven Pritchett in Mascoutah — who diagnosed her with trigeminal neuralgia.
“It is just kind of a blow getting this diagnosis,” Orlet said, “because there’s no cure.”
She said trigeminal neuralgia is also known as the “suicide disease,” because it’s hard to live with the disorder. “The pain is just so intense, and you’re just in constant pain and some people cannot take it,” Orlet said.
There are two types of trigeminal neuralgia — typical and atypical. Typical has episodes of pain. Atypical has constant pain. Cheryl Orlet of Mascoutah has atypical.
By sharing her story, Orlet, 34, hopes to raise awareness about the medical disorder. Wednesday is International Trigeminal Neuralgia Awareness Day.
There are two types of trigeminal neuralgia — typical and atypical. Typical, or Type 1, has episodes of pain. Atypical, or Type 2, has constant pain. Cheryl Orlet has atypical.
“It is non-stop,” said Andy Orlet, her husband of 12 years. “There is no relief.”
The Orlets have been aggressive in trying to find relief. A year ago, Cheryl Orlet underwent brain surgery at St. Anthony’s Medical Center in St. Louis to try to find the cause of her trigeminal neuralgia.
Andy Orlet said the exploratory surgery was the “only option” that was left after MRIs failed to show what was causing the trigeminal neuralgia.
Trigeminal neuralgia has to be one of the few diagnoses that you were actually desperate enough and willing to go into brain surgery.
Cheryl Orlet of Mascoutah
The surgery included removal of a piece of Cheryl Orlet’s skull. The surgeon found a large artery adhered to the trigeminal nerve.
“They can’t get rid of an artery so they just scraped and scraped and got the artery off,” she explained.
The surgery typically has an 84 percent success rate, the Orlets said. “We were really hopeful going into it,” Cheryl Orlet said. “Trigeminal neuralgia has to be one of the few diagnoses that you were actually desperate enough and willing to go into brain surgery.”
It was supposed to be a three-day hospital stay following the surgery. However, Cheryl Orlet spent 10 days in the hospital, including three days in the intensive care unit. She also spent 24 hours on a ventilator.
“It was pretty shocking for everyone,” Cheryl Orlet said.
The surgery worked for about a month, the Orlets said, before the pain returned full-force. “I’m just always with pain; it just gets worse,” Cheryl Orlet said. “It doesn’t ever really go away.”
I know there’s so many people out there that have things 100 times worse than what I have. It’s rare, not a lot of money gets put into research.
Cheryl Orlet of Mascoutah who has trigeminial neuralgia
The Orlets take it day-by-day, planning around the weather, which triggers the facial pain for Cheryl Orlet. “Everything is a trigger,” she said.
Cheryl Orlet, who takes daily anticonvulsion medication, can wake up and think it’s not going to be a bad pain day, but then something as simple as brushing her teeth, washing her face or shampooing her hair can intensify the pain.
“I can try so hard to stay active,” Cheryl Orlet said. But when her kids are out playing in the snow, she’s watching from the window.
Andy Orlet said the most frustrating aspect is how much is unknown about trigeminal neuralgia. “It’s very rare,” he said.
About 12 in 100,000 people have the disease, according to the National Institute of Neurological Disorders and Stroke.
Cheryl Orlet goes to the hospital at least once every other month for pain management related to trigeminal neuralgia. Occasionally, she has to call a friend or family member to pick her up from somewhere if the pain becomes overwhelming.
“Sometimes I feel like I’m 15 years old because I have to call my mom to come pick me up from somewhere,” Cheryl Orlet said. “This just sometimes feels like it takes so much from you...I don’t feel like the same person I was four years ago.”