‘It changes ev­ery­thing’

Cavendish woman deals with trigem­i­nal neu­ral­gia, aware­ness day planned


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.

Sup­port sys­tem

I’ve never been to­tally clear of pain.

— Carolyn Brown

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 great­nephew Matthew Sparkes, was di­ag­nosed with trauma in­duced TN ear­lier this year.

Rais­ing aware­ness

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.

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.

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.

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