Today marks the third annual international Trigeminal Neuralgia awareness day, but few people in British Columbia know about the debilitating condition.
Vancouver’s 55-year-old Jennifer Sweeney had her first onset of Trigeminal Neuralgia in 2010.
The triggers for the condition were in Sweeney’s mouth, so she would be in terrible pain every time she ate.
“It would feel like being cut or stabbed,” says Sweeney. “Sometimes, it would be burning and there would be times when the pain would escalate into another phase, where it would feel like I had a poker going right through my head.”
The Trigeminal Neuralgia Association of Canada says Trigeminal Neuralgia, also called Tic Doloureux, is thought to be one of the most painful conditions known to medicine.
It is characterized by sudden and severe stabbing, bursts of shock-like or electrical pain usually on one side of the face.
The pain can be triggered by simple activities like brushing teeth, eating and drinking or talking.
Treatment options include anti-seizure medication and surgery.
Sweeney says drugs are usually tried first, but can have serious side effects.
“[The drugs] sedate you and everything slows down,” she says. “Your ability to think and function is really affected by these drugs. Sometimes you have to be on quite a high dose.”
Sweeney was allergic to drugs and had to have a surgery in Winnipeg because she could not get help in Vancouver.
Sweeney says she was laughed at by a doctor when she tried to seek help and was told to go see a psychiatrist.
“I spent almost a full year, where all I wanted to do was die until I finally got diagnosed and got some help,” she says. “I never imagined that there was a possibility of this kind of pain.”
A surgeon in Winnipeg told Sweeney some of his clients told him their pain was worse than having their arm ripped off in a car crash or having a Cesarean section without anesthetic.
About five out of every 100,000 people, or 1,500 people, are diagnosed with Trigeminal Neuralgia each year in Canada.
To help others with the condition, Sweeny writes a blog, where she talks about her experience with Trigeminal Neuralgia.
She says it has been rewarding and has given her a sense of purpose.
“I just wanted to record the fact that I was here. I was not sure what the outcome was going to be and I wanted to make sure that my story was out there. I think what I can also show is that there is some hope and I can go and do things that I used to be able to do.”
Sweeney also relies on her support group on Facebook, where people with Trigeminal Neuralgia share information, resources and ideas.
“We get to find out that we are not alone,” she says.
Ultimately, Sweeney says there is a long way to go as far as awareness about Trigeminal Neuralgia in British Columbia.
She wants to see more research being done in B.C. and a support network for people who suffer in silence.
“I would love to find a cure and a way to prevent it,” she adds.
This year’s awareness campaign is centered around children and teens with Trigeminal Neuralgia and facial pain disorders.
To commemorate the international awareness day, the Vancouver Convention Centre, Olympic Cauldron, Science World and Canada Place will all be lit up in teal tonight.
The second annual Lantern Walk of Awareness was held this weekend.
To find more about the condition and support groups available, go here.