Amherst resident promotes international awareness day Oct. 7
© Andrew Wagstaff - cumberlandnewsnow
Amherst resident Anne MacAloney, shown here with her faithful dog Joe, is spreading the word about the first-ever International Trigeminal Awareness Day on Oct. 7. Her life has been turned upside down by the chronic pain condition since 1997.
AMHERST – Anne MacAloney had no idea what was wrong with her. But it wasn’t a sinus infection.
The Amherst woman lived two years of her life experiencing excruciating pain in her face, and traveling back and forth to her doctor. Eventually doctors would confirm her own Internet research and diagnose her with trigeminal neuralgia (TN.)
“I thought I was going nuts,” she said. “All I could do was eat Advil like it was going out of style, and lay on the cold bathroom floor in the fetal position, holding my head and just vibrating, bawling my eyes out.”
It all started in 1997, when she had a molar extracted. A month or two later she began having pains in her face, which she described as feeling like real bad toothaches. But X-rays should that her extraction had gone fine and there was nothing wrong with her teeth.
She began trips to see doctors, who gave her antibiotics for what they first believed was a sinus infection. When that didn’t pan out she was sent for numerous MRIs, CT scans, and numerous procedures, all of which aggravated her pain but did not provide a solution.
“This went on for two years,” said MacAloney. “Finally I got sent to a neurologist in Moncton.”
There she was diagnosed with neuralgia, and given medication for nerve pain. That seemed to help for a few months, but the pain started coming back yet again.
At that point, she turned to the Internet.
“I thought, I’m going to find out what I have, because apparently they’re not getting what I’m telling them,” said MacAloney. “I must have been explaining it wrong.”
She typed three simple words on Google: “neuralgia face pain.” Then she was presented with countless sites about trigeminal neuralgia, something no doctor had ever mentioned to her before, which listed all of the symptoms and possible causes she had experienced.
It was also described as “one of the most painful conditions seen in medicine.”
She printed off pages from websites such as the Mayo Clinic and took them to her doctor, declaring she had solved the mystery of her pain.
“All excited, I said, ‘I know what I have! It’s trigeminal neuralgia,’” she recalled. “He looked me straight in the face and said, ‘I know. I didn’t want to tell you.’ To this day, I’m still flabbergasted.”
MacAloney was diagnosed with atypical trigeminal neuralgia, a rare form of TN, which is a disorder of the fifth cranial nerve. The pain is caused by compression of the nerve and the resulting deterioration of its protective coating.
“It’s like a wire without a coating,” she said. “When another wire is over top of it, it’s going to start jumping and shorting. That’s what it’s doing – it’s shorting out.”
Trigeminal neuralgia can be triggered by dental procedures, and can also be brought on by stress, both of which MacAloney was experiencing at the time her pain started. She was only 22 years old.
At that time of her diagnosis, she was actually in a remission from her pain. It lasted six years before returning in 2005. She went back on medication and tried to carry on as best as she could, working first as a hairstylist and then a dog groomer. She opted for her first brain surgery in 2011.
“I just couldn’t deal with it anymore,” said MacAloney. “I was trying to work, and canceling on days I couldn’t. I was losing clientele every time I had to cancel.”
Her surgery was a micro-vascular decompression (MVD) procedure, which took the pain away for 10 months. She had another MVD in June of 2012, and a third one five months later. Each time, the pain returned.
Her most recent procedure was Gamma knife radiosurgery, which uses radiation to damage the nerve and reduce the pain. For this she had to travel to Bishops University in Sherbrooke, Que. This surgery helped her somewhat, but she still has an underlying aching pain, and gets periodic TN “shocks,” which she likened to being hit with a Taser. These come every day, and can last from minutes to hours.
Her husband, Ian MacDougall, said he feels helpless when she goes through these.
“There’s not much I can do,” said MacDougall, a quiet man with tired eyes and a weary smile. “I get her some water and some pills, and hold her. That’s it. Once the water and the pills are done, I just hold her.”
Once a high school track athlete, MacAloney said her three brain surgeries have stressed her heart and other organs to the point where she no longer has any stamina. Although she recently reopened her hair salon to try and make ends meet, she said she really hasn’t been able to work in over a year, and help has not been there.
“I used to be the dependable one, and I was proud of that trait,” she said. “I usually fought hard before giving up, but this is making me want to give up. I’ve had enough. I’m tired.”
Her condition has caused her friends, jobs, an immeasurable amount of money, and almost her marriage. What helps the most is turning online to the hundreds of “TN friends” from around the world she has met and kept in touch with on Facebook.
“It’s great to know that we’re not alone, and that somebody knows what we’re talking about,” said MacAloney.
October 7 is the first International Trigeminal Neuralgia Awareness Day. She is hoping more awareness will lead to help for others out there who are going through the same thing she has, and that maybe someday a cure can be found.
“It’s so we can get a quicker diagnosis,” she said. “It’s so no more people have to go two years thinking they’re crazy. There are tonnes of us that even our doctors don’t believe us.”