Teal lights are planned to light up Niagra Falls on Monday to help raise awareness for trigeminal neuralgia.
Tormented with a disease interfering with her everyday life, one local woman says most people quite literally do not understand her pain.
Pamela Elliot, of Wapakoneta, suffers from a disease that causes constant and “excruciating burning and throbbing” facial pain.
“I was an outgoing person,” Elliot said about her life before the disease. “Trigeminal neuralgia made me a prisoner in my own body.”
Elliot, 62, began having pain on the left side of her face in 2003. After visiting her family physician, Elliot was given multiple antibiotics to help ease what physicians deemed a bad sinus infection.
Elliot was later sent to the emergency room after overdosing on antibiotics, without any easing of the burning, throbbing pain on the left side of her face.
Elliot’s facial pain continued, and she was sent to a dentist to have x-rays for a possible root canal. Trusting her dentist and oral surgeon, Elliot had four teeth removed to get rid of the root issue and eliminate her facial pain.
After surgical removal of four teeth and recovery of feeling in her upper jaw, her pain returned.
Elliot went to see a neurologist, who told her about another patient of his that had similar symptoms and was diagnosed with the facial pain disorder trigeminal neuralgia. In response, Elliot was given anti-epilepsy medication.
“Had he not had that other patient, I don’t think he would have put it together,” Elliot said.
The medication she was given — although not specific for her disease — eased the pain.
Elliot lived free of discomfort for two years.
However, the pain crept slowly back into her life.
Every few months, Elliot returned to her family physician, who upped her medication.
“I was on a cocktail of meds,” Elliot said. “I was like a zombie — I couldn’t think straight, I was lethargic. It fogs the mind so you don’t feel the pain because nothing will get rid of the pain.”
As she searched for more information about trigeminal neuralgia, Elliot discovered the cause of her pain — surrounding blood vessels were rubbing off the protective coating of the nerve in her face.
Also known as the “suicide disease,” many people who suffer from trigeminal neuralgia do not have the strength to continue fighting for relief.
She found a support group, Trigeminal Neuralgia and Me (TNNME), on Facebook, and received advice about what may ease the pain. For the first time, Elliot heard from others suffering from trigeminal neuralgia and listened to what had worked, or not worked, for them.
She said she tried massage therapy, facial injections and even had upper cervical (relating to the cervical spine) surgery — all in the effort to ease the constant stabbing that plagued her daily life.
Elliot was told of microvascular decompression surgery that would remove the blood vessels surrounding the nerve. However, after visiting multiple physicians and surgeons who were unable to locate the wearing away of her trigeminal nerve, Elliot was destined to endure the pain.
Through the support group, Elliot was told of a neurosurgeon at the University of Cincinnati who specializes in trigeminal neuralgia. He found the nerve damage and performed a surgery.
“I lived pain-free for four months,” Elliot said. “After that, it came back with a vengeance.”
Elliot’s pain returned on the middle branch of her trigeminal nerve, but with the added pain of the lower nerve as well. After multiple attempts at relief, her upper face became subjected to the same frequent pain. The entire left side of her face was in constant misery.
“It’s an intense, constant burning,” Elliot said.
Elliot said she has endured pain throughout her life, and she laughs when physicians ask her to rate her facial pain.
“I’ve broken my toe, I’ve had my appendix removed, I’ve had two, natural childbirths,” Elliot said. “That was nothing compared to this.”
Disappointed in the return of the facial pain, Elliot searched for other answers.
She eventually had a surgery which partially severed the trigeminal nerve, numbing the pain on the left side of her face.
“The burning pain is gone,” Elliot said. “I can get up every day and get dressed, fix my hair, put on make-up, clean my house. I can drive again.”
Elliot said physicians expect her pain to return within two years. The next step would be to completely sever the nerve, which would, in turn cause complete loss of muscle control.
“I refuse,” Elliot said.
When the nerve grows back, Elliot said she will endure through the pain and wait for a cure.
Right now, Elliot said her pain is manageable.
She said the pain was replaced with a constant tingling numbness that she is on medication to control. Elliot described the feeling as an ice cube on a toothache.
“Trigeminal neuraliga completely controls your life,” Elliot said. “You have to live for each day. If it’s a bad day, you hope tomorrow is better.”
Elliot said she stays involved with TNNME support group to help others find answers to their questions. The number of people being diagnosed with trigeminal neuralgia is increasing.
“It hurts me to see the numbers are growing,” Elliot said. “The compassion and support that I see in that group is what I find so awesome.”
TNNME is an organization dedicated to spreading awareness and about the disease and requesting the World Health Organization to add trigeminal neuralgia to the “Health Topic List.”
By adding the disease to this list, trigeminal neuralgia will receive more attention and will gain resources from funding and research opportunities.
TNNME Founder Toni Saunders, who also suffers from trigeminal neuralgia, started the website as a place for people with trigeminal neuralgia to “share, vent, ask for help” and find answers to their many questions about the disease. When Saunders was first diagnosed with trigeminal neuralgia, she said she had never heard of the disease. Her physician told her there was no cure for her pain besides taking medication.
When she got home from a doctor’s visit, she did an online search for the disease.
Saunders read the same information she heard at the doctors’ office was coming from medical sites. She said there was nothing stating what anyone was doing to relieve pain.
“It all said the pain will progress over time and there’s nothing you can do,” Saunders said. “It’s hurtful to know that its going to get worse and there’s nothing being done.”
She was confronted with what seemed like a hopeless situation. She said she never knew when the pain was going to affect her.
“When the wind blows, when you’re putting on make-up, while eating — loud noise, light — you never know what will be a trigger,” Saunders said. “Some people live in that fear. They’re house bound.”
Saunders said she used to enjoy dancing, but now she cannot even enter a crowded room.
Despite her situation, Saunders said she has always been a positive person who makes the best of any situation.
“I said, ‘I need to learn how to manage this and live my life. I need to find out what I can do to help,’ ” Saunders said.
At the time she was diagnosed, Saunders said she believed she was the only person in Massachusetts who had trigeminal neuralgia, so she created a website to try and reach out to other victims of trigeminal neuralgia.
She said the website started out as as just a support group, a place where people with trigeminal neuralgia could tell their stories without being judged and where they could give advice to other victims.
She told herself she was going to spend one year doing everything in her power to spread awareness and make International Trigeminal Neuralgia Day known to the world.
Now, one year later, Saunders and the rest of the trigeminal neuralgia community are celebrating their accomplishments as countries around the world will light up teal, the color chosen to represent trigeminal neuralgia.
Structures lighting up on Monday include the Canton Tower in China, the Gateshead Millennium Bridge and Trafalgar Square in the United Kingdom, Niagara Falls in Canada, Colpatria Tower in Columbia, the Wells Fargo Duke Energy Center in North Carolina and many others.
While International Trigeminal Neuralgia Day is gaining awareness, it is still unofficial. Saunders, Elliot and many other trigeminal neuralgia advocates are dedicating their time to get the public to sign their petition for the World Health Organization to add trigeminal neuralgia to its “Health Topic” List.
“It will open doors for more funding for research,” Saunders said. “That’s what’s needed.”