Cavendish woman deals with trigeminal neuralgia, awareness day planned
© Photo by Nicholas Mercer/The Compass
Cavendish resident Carolyn Brown (right) has been suffering from a disease called trigeminal neuralgia for the past several years. On Oct. 7, Carolyn and her family will be holding events this week as a part of Trigeminal Neuralgia Awareness Day on Oct. 7. Here, she is shown with her husband, Dennis, at the couple's home.
Cavendish’s Carolyn Brown remembers when she first felt the intense pain that comes with trigeminal neuralgia or TN.
It was Nov. 17, 2009 and she was in a St. John’s hotel room with two of her sisters, Gerrie Howse and Holly Reid. A searing, white hot flash of pain had splashed across the right side of her face.
The next day, Carolyn was supposed to receive treatment for the displacement of her temporomandibular joint (TMJ), when the pain struck her.
“It was the most excruciating pain I had ever felt,” she said. “That’s when we started thinking that it was not just TMJ.
“I had no idea what was going on with me. I didn’t know if I had a tumour or what it was, it was just so uncontrollable.”
Since that moment, it has been a continuous struggle for Carolyn.
TN affects people in different ways.
Sometimes it’s a dull throbbing pain, while other times it’s like being “struck by lightning.”
Some days are better than most, but that does not mean the pain goes away.
“I’ve never been totally clear of pain,” said Carolyn.
That’s the affliction of those who suffer with TN.
What it does
Trigeminal neuralgia is a nerve disorder originating with the trigeminal nerve, which is responsible for sensations in the face, and muscular movements such as chewing and biting.
This affliction brings the constant threat of pain and the knowledge that at any moment some invisible predator could cripple your body.
“Your body is exhausted from the pain,” said Carolyn.
The pain can come at any time, day or night.
Entering the Brown’s Cavendish home, Carolyn meets me at the door.
Offering a handshake, it appears she is in good spirits. She admits an hour earlier, she might not have been able to talk about her condition.
Sitting on the blue couch in the sitting room, Carolyn is looking out the bay windows towards the waters of Trinity Bay South.
Next to her is her husband Dennis. He recounts how TN does not let up, even at night.
“Some nights, (Carolyn) is up every hour with pain and it might not subside for a half hour,” said Dennis.
TN can strike at any moment, from any number of causes. It has been known to go into remission, but when it comes back, it is more often than not, more severe than before.
The pain can be caused by a slight wind, the softest touch or a sudden movement.
“ She has never been fully clear of the pain,” said Dennis. “If she eats a certain way, or the wind blows a certain way on her face. There was a time when she was visiting a friend and someone went to give her a hug goodbye, grabbed that side of the face and set it off.”
‘It changes everything’
Since the pain started, Carolyn’s life has been in constant flux.
She no longer works as a computer support specialist with the Eastern School District.
“I had a job that I loved,” said Carolyn.
She no longer does her own house-cleaning or gardening.
“It robs you of your life,” said Dennis.
“I don’t do anything anymore, really,” added Carolyn.
It’s not only her hobbies that have been affected. There are also aspects of her family life that have changed.
Carolyn used to spend a great deal of time with her oldest granddaughter.
“I can’t lift her when she’s around me. Everybody is being cautious because she can’t get up in my arms,” she said.
Carolyn knows she is lucky. She has a support system.
Through the constant work of family, Carolyn has a healthy group of supporters to lean on when she needs it.
Her sister Lorraine has worked tirelessly to get the word out about the first Trigeminal Neuralgia Awareness Day on Oct. 7.
When Dennis is away to work, the rest of the family lends a hand.
“There was a time when I would be the one taking care of everybody, but that doesn’t work anymore,” said Carolyn.
Some people who suffer from TN do not have such a system. They are forced to suffer in silence.
It should be noted that Carolyn’s great-nephew Matthew Sparkes, was diagnosed with trauma induced TN earlier this year.
Oct. 7 will mark the inaugural awareness day for the disease.
The global response to the work done by various groups has been impressive.
Some 16 buildings will be flashing the colour teal to help raise public awareness for TN. This includes the Peace Bridge between Buffalo, New York and Erie, Ontario, both sides of Niagara Falls and the northern lights roof display at B.C. Place in Vancouver, British Columbia.
Carolyn’s sister Lorraine Burgess has been sending out information to local government representatives with hopes of getting it recognized.
On Sunday (Oct. 6), there is an awareness walk scheduled for 2 p.m. at the Cavendish Community Centre. Supporters will start at the centre and end at Carolyn's house.
In Newfoundland and Labrador, there is very little information on the diagnosis of TN and the corresponding treatment.
It can look like so many different things and there is very little that can be done for people who have it, according to Carolyn.
The disease has been referred to as the “suicide disease.”
“That’s why the awareness day is so important,” she said.
For more information on the awareness day, visit www.facebook.com/trigeminalneuralgiasupportnewfoundlandlabrador.