Support group formed for trigeminal neuralgia sufferers

Andrew
Andrew Wagstaff
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AMHERST – Anne MacAloney learned something important when she came forward to speak about her illness three months ago. She’s not alone – not even locally.
A story published in the Oct. 4 issue of the Amherst News detailed MacAloney’s struggle with trigeminal neuralgia, a rare chronic pain condition she has been battling since 1997. Since that story appeared (in promotion of the first International Trigeminal Awareness Day on Oct. 7), MacAloney has been approached by several others in Cumberland County suffering from the same condition.

She has had people contact her from right here in Amherst, as well as the River Hebert area, Sackville, N.B., and as far away as Moncton and Halifax.

“None of us knew any of the others existed,” she explained. “A doctor is not allowed to say, ‘Oh yes, this person has had it too and I’ve been treating them.’ But seeing that in the paper made quite a difference.”

Described by some as “one of the most painful conditions seen in medicine,” trigeminal neuralgia is a neuropathic disorder characterized by periods of intense pain in the face. MacAloney had never known anyone else in this area with it.

Now that they have been in touch with each other, she said they have created a local trigeminal neuralgia support group, and plan to meet regularly once the weather becomes more favourable.

“We tend to isolate ourselves anyway, because we don’t like to go out in the weather,” she said, explaining that weather conditions like light, wind and temperature changes can trigger the pain. “So we don’t go out a lot, and we lose ties with friends, even family.”

She also is involved with two online support groups on Facebook.

The benefits of support include the opportunity to share information about treatments and therapies, and just to know you’re not alone.

“Once I knew there were more people out there, it kind of made it a real thing,” said MacAloney. “It made me realize I wasn’t going crazy, all of a sudden.”

Those wishing to contact her can do so by email at irishlassmac@hotmail.com or by phone at 669-1958 (text after 6 p.m.) or on Facebook at annemacaloney@facebook.com.

awagstaff@citizenrecord.ca

Twitter: @ADNandrew

Geographic location: Amherst, River Hebert, Moncton Halifax

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Recent comments

  • Frank Sherwood
    March 08, 2014 - 10:53

    I am a patient advocate with the TNA Suburban Detroit Trigeminal Neuralgia Support Group. I would like patients to be aware of a recently discovered therapy for stopping TN pain by restricting saturated fat. Dr. Narayan Verma, at the 2012 Annual Meeting of the American Academy of Neurology, presented the results of a 14-year international study establishing the efficacy of this therapy. Patients have become pain free in less than a month not only in the U.S., but also Canada, South Africa, Virgin Islands, Australia, Ireland, Kenya, Indonesia, England, Hawaii, etc. As expected patients have reported improvement with cholesterol, blood pressure, constipation, heartburn, obesity, etc. Failed percutaneous procedures, radiation, or the MVD surgery do not necessarily reduce the diet’s effectiveness. Patients can receive a free copy of a 10-page report with diet instructions, the amount of saturated fat in 140 foods, and recipes by emailing a Post Office mailing address to (frank@sokolitz.com). The report is free to any country.

  • Janet McGee
    January 25, 2014 - 22:30

    I'm so glad you had the courage to speak out, Anne, and happier still that you have found that you are not alone. You've got tnnme.com and the International Trigeminal Awareness Fighters on your side! May you have a breeze-free winter.

  • Janet McGee
    January 25, 2014 - 22:28

    I'm so glad you had the courage to speak out, Anne, and happier still that you have found that you are not alone. You've got tnnme.com and the International Trigeminal Awareness Fighters on your side! I wish you a breeze-free winter.

  • Bette L. MACALONEY
    January 24, 2014 - 21:00

    Our dearest Anne, Dad and I are proud of you for making this illness aware to those who have it. I can see you have made progress already that other people who suffer as you do are beginning to see that they are not alone. It is a great feeling after living with this kind of pain to know that you are not alone and we wish you all the best that someday, there will be a cure. Never give up Anne, your mom and dad love you dearly. Best of luck in getting a support society going and to be able to meet other people who suffer as well. I'm sure that everyone could benefit when they know they are not alone. love from mom and dad xoxo!