Lora Romney: Trigeminal Neuralgia

Lora Romney has been married for almost 24 years and has four almost grown (and very tall) children who she says give her life meaning and endless joy. She has devoted 23 years to a career as a real estate accountant. She loves to walk her dog, play the flute, read and camp with her family.

Lora’s life changed forever, when in 2011 she awoke to a strange burning headache that would not go away. After a sinus surgery and opinions from five different neurologists, she was finally diagnosed with atypical trigeminal neuralgia: a facial nerve disease. 

“Since that day, I haven’t had a day without pain.” 

Dozens of medications, procedures, and even nerve blocking procedures have had very little effect. In 2013 she underwent neurosurgery to decompress her nerve. This surgery has succeeded in eliminating her weekly hospital visits for intravenous pain control, but she still continues to struggle with overwhelming pain each day. Among the worst struggles she faces are the side effects of the medications she is on. Her pain doctors have told her that there is nothing left to try other than a permanent nerve stimulator implant. This device may offer some relief, but it comes with a high chance of infection and other future complications. Her symptoms have forced her to give up going to the gym, performing in a local flute choir, assignments that require her to leave her home, including volunteering at her school with her children.

“I’m tired of being seen by everyone as a ‘sick person’ that never seems to get better. Life has too much to offer and I don’t want to be forced to stay at home and watch from the sidelines.”

She has read countless stories of chronic pain sufferers who have nowhere to turn since traditional medications have failed them. Those with trigeminal neuralgia are desperate for an answer to their pain and Lora is no different. Recently, Lora underwent surgery to have a nerve stimulator implant but unfortunately, the procedure failed and she is left wondering when she will be able to find relief.

Because of the rareness of her condition, Lora has often turned to social media to find those suffering with the same condition for answers.

“I’ve been told to try medical cannabis, that it might help. So many people that live in states with medical cannabis have said that it gives them the relief that I am looking for.”

Even if a resident of Utah chooses to go to Colorado to see if cannabis will work for them, they are still at risk of losing access pain medication from their doctor should since many pain clinics test urine to check for THC.

“I likely won’t ever be cured, but if I was able control the worst symptoms of my disease I wouldn’t feel like it defines my life.” 

Lora is sharing her story to urge lawmakers to support medical cannabis in the state of Utah. Although she has never used medical cannabis, she wants safe access to try it in order to mitigate the worst symptoms of her condition.