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Kaysville resident Lora Romney tried everything, including brain surgery and facial stimulator implants, to relieve the severe pain caused by Atypical Trigeminal Neuralgia, a rare disorder that causes nerve pain in the face. She takes opiates and kratom, but would also like to try different strains of cannabis.

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Lora Romney is shown here with her dog. A Mormon and mother of four children ages 16 to 24, Romney suffers from a rare nerve disorder that causes severe and chronic facial pain. After failing to get much relief from all available options, Romney hopes to one day test various strains of cannabis.

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KAYSVILLE — On Monday, Kaysville resident Lora Romney will help unveil Utah’s long awaited ballot initiative to legalize medical cannabis. And in her case, this push is personal. At the age of 41, the Mormon mother of four found her life turned upside down by chronic pain.

“I woke up one morning with a burning headache over my left eye,” Romney said. “I’d never felt anything like it, and it never went away.”

Her doctor initially said she had a sinus infection and put her on antibiotics, which caused her pain to dramatically escalate. Thus started her search for two things — an accurate diagnosis and an effective way to keep the pain in check. 

She eventually was diagnosed with Atypical Trigeminal Neuralgia, a very rare and difficult to diagnose disorder that affects the fifth cranial nerve.

Romney underwent brain surgery — a procedure called microvascular decompression — which did little to relieve her pain.

“It’s like an ice cream headache that doesn’t go away. When people hear that, they get it,” Romney said. “It presents on my forehead, down my nose and on my cheekbone.”

In March 2016, Romney had a stimulator implanted in her face which was connected to a battery pack in her chest.

“But that hasn’t worked either,” Romney said. She also tried Botox, acupuncture, nerve blocks and about 40 different prescriptions with varying side effects — one “fried” her short-term memory. 

“The pain doctor told me there’s nothing they can do, so I’m on an opiate prescription and am allowed two pills per day,” Romney said. Now 47, she said she was thankful they took her severe pain down a couple of notches. But two months ago she discovered kratom, a plant that grows in Africa and Southeast Asia. Taking it in powdered form in orange juice enabled her to cut back to one opiate per day.

“To me that’s enormous,” Romney said. 

In August 2016, the DEA intended to temporarily reclassify kratom as a Schedule I drug — heroin, LSD and marijuana are in that category. But public outcry caused the agency to reconsider that action.

RELATED: Kratom Gets Reprieve From Drug Enforcement Administration

Romney said she would love to test different strains of cannabis on her own pain levels, but such experimentation could land her behind bars.

“There are answers in cannabis and kratom where people have hit a wall,” Romney said. “I tried cannabis a few times. But my particular pain is one of the hardest to deal with, so I’d have to have access to a lot of different strains to see which works.”

Romney connected with many others around the globe who wrestle with the same disorder, and they’ve shared their cannabis success stories with her.

“I’ve read dozens of accounts where it’s worked for them,” Romney said. “I know it works, I’ve seen it. This is why I’m fighting so hard for a chance at life again.”

Romney, who works part-time as comptroller for American Landmark Group, also serves as treasurer for TRUCE Utah, an advocacy group committed to putting the question of legalizing medical cannabis to voters in 2018. 

The nuts and bolts of that ballot initiative will roll out Monday, June 26, in a 10 a.m.press conference in the Presentation Room of the Utah State Capitol. 

No easy task ahead

Last month, Kaysville resident Christine Stenquist expressed frustration with state lawmakers for not heeding the voices of so many patients who found relief through cannabis, herself included. But she also expressed excitement and hope in taking the issue to the people.

RELATED: Medical marijuana advocates continue push for new legislation in Utah

Stenquist co-founded TRUCE Utah — TRUCE stands for Together for Responsible Use and  Cannabis Education — and will now serve as campaign spokesperson for Utah Patients Coalition, the political issues committee formed to support the 2018 ballot initiative.

“We’ve raised funds so we’re ready to kick off. It’s been a battle to draft the language, but I’m happy for something we can file and get excited about,” Stenquist said.

The process began with drafting the bill, and on Monday, advocates will file it with the Lieutenant Governor’s office. If accepted, the Governor’s Office of Management and Budget will estimate its fiscal impact. Sponsors are then tasked with holding seven public hearings throughout the state.

The next step involves circulating petitions to gather 113,143 valid voter signatures from 26 of Utah’s 29 state senate districts.Those are due to county clerks within 316 days of the initiative’s filing or by April 15, 2018 — whichever comes first. 

Polls conducted in fall 2016 indicated that a majority of Utahns favored legalizing medical cannabis. But most state lawmakers feel differently.

Rep. Paul Ray, a Republican from Clinton, said he’s flat out opposed because “we don’t have any medical evidence that it actually works.”

“We passed legislation this session that allows the University of Utah to study it and come back with recommendations,” Ray said. “But right now, we don’t know dosage or how to prescribe it.”

So to Ray, the ballot initiative is premature. And he questions medical cannabis research conducted in other countries.

“I want our people here to study it,” Ray said, confident in the U of U’s objectivity because it “doesn’t have a dog in the fight.”

Ray also worries that legalizing medical use will pave the way for legal recreational use as well, something he and most Utahns oppose.

Cannabis research in the U.S. has been limited because of its classification as a Schedule I drug. The CARERS ACT was recently reintroduced in Congress to downgrade that classification to Schedule II, and in mid-June, Utah Sen. Mike Lee signed on as a co-sponsor.

State Sen. Todd Weiler, R-Woods Cross, believes reclassification is the right thing to do.

“Ideally I’d like to see it prescribed by a doctor and sold in pharmacies,” Weiler said. “So I think we need to reschedule it so it truly becomes a states’ rights issue — right now its a states rights issue in name only.”

But legalization of medical cannabis is much more complex than a simple yes or no, he added.

“The ‘how’ is a lot more important than yes or no. There are a lot of ancillary issues raised if you legalize it” such as where will it be grown, sold, and how close those facilities can be to schools, Weiler said, noting that research on strengths, strains and THC levels also needs to be done. THC is short for Tetrahydrocannabinol, the psychoactive component in cannabis. 

Former state lawmaker Carl Wimmer is one of the initiative’s five sponsors. In 2012, Wimmer resigned his House seat to run for the U.S. Congress, but lost the Republican nomination to Mia Love at state convention. 

Now a police officer and evangelical pastor in central Utah, Wimmer explained his stance on cannabis.

“As a Christian, I’m opposed to things that would alter our minds and bodies. I would be against recreational drugs of any kind,” Wimmer said. “But I am strongly supportive of the legalization of medical cannabis for those who are suffering and have no other means to get relief. I believe it is the compassionate route to take.”

The issue became personal for Wimmer after he served as caregiver for his brother who died from cancer a decade ago.

“To see him get no relief no matter how many opiates and pain relievers were prescribed to him, that’s a terrible way to die,” Wimmer said. “I’m under no delusions that medical cannabis will be a panacea for people who are ill, but if it can help them, it’s the absolute lack of compassion to not allow somebody some form of medication that can bring them relief and respite from their constant pain.”

Contact reporter Cathy McKitrick at 801-625-4214 or cmckitrick@standard.net. Follow her on Twitter at @catmck.