Living with trigeminal neuralgia

Andrew
Andrew Wagstaff
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Amherst resident promotes international awareness day Oct. 7

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.”

awagstaff@citizenrecord.ca

Twitter: @ADNandrew

 

Organizations: Google, Mayo Clinic, Bishops University

Geographic location: Amherst, Moncton, Sherbrooke, Que Taser

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  • WENDY OBRIEN
    October 10, 2013 - 17:40

    I have A-Typical Trigeminal Neuralgia also. mine started one day in july 1993 while walking on the beach with my husband. i thought i had a very bad tooth ache so we went right to the dentist . my dentist said it wasnt that so called my doctor in (DR. DAVID RIPPEY). He knew right away what it was , so he called the pain clinic in Halifax. i then saw DR. Mary Linch . she did nerve blocks and accupunture (which did help for a time).I did this every 6 months until i was referred to DR. DHANY CHAREST in Moncton. when i woke up i thought i was in heaven , for the first time in 14 years i had no pain. my life had completely turned around.. i could go outside in the wind and rain or open the oven door with out pain. then --it came back . i had surgery again October 16th 2008. i have had 2 or 3 flair-ups but it doesent last. i pray every day that it never does. i know exactly what Anne is going through. i hope that one day the pain stops for her as well Wendy OBrien

  • Kathy Kempken
    October 08, 2013 - 11:13

    Thank you so much for doing this very important interview that needs highlighting. I understand exactly what daily struggles Anne MacAloney goes thru. I too have had A-Typical Trigeminal Neuralgia and Facial Pain Unknown for ten + years, gone thru many procedures and tried a lot of different medications. Nothing has helped so I remain on medications, which are taking a very big toll my mind and body! I wish the best of luck to you and all Trigeminal Neuralgia sufferers.

  • Jack Frost
    October 07, 2013 - 09:54

    Wow, god love ya and may it subside at some point. Such a smiling face to be stricken with chronic crippling pain. My question is what did the dentist, or how did the dentist trip bring about this? Scary to say the least.

  • Robert Handley
    October 05, 2013 - 18:30

    I also have been diagnosed with trigeminal neuralgia by a neurologist in Moncton. I live in Amherst and with TN being so rare it is extremely unusual to find two people in such a small community. as Anne has described, this condition is very painful and difficult to describe and convince both family and friends the intensity of the pain. Thank you Anne for telling your story and letting people know about TN. It is also comforting to know there is someone close who understands.

  • Debbie Gilroy
    October 05, 2013 - 09:56

    wonderful story and unless you have been through it, which I have, nobody truly understands this rare but painful condition. There are a lot of people out there with constant pain and can sympathize with it. There is a lot more to the pain though, depression, being isolated in your home, doctors not understanding, because it is rare. I remember thinking, is this what life is all about, I will never kiss my husband or kids, never talk to anybody, never eat, I lost 30lbs, never be outside, never go back to work and this is just a few of my thoughts...gratefully after a long while and spending $3000 going to the dentist, she mentioned tn, I also went home and looked it up and told my doctor, she gave me medication and to make a long story short, the pain eventually went away. that was approximately 15yrs ago. I am in remission but the thought of it coming back is scary, not a day goes by that I don't think of it and when somebody showed me this article it brought everything back. I could cry thinking about and writing this right now. there are still emotional scars that will never go away but I deal with it and be grateful that I do not have that pain right now. best of luck to anne.

  • Lorraine Burgess
    October 03, 2013 - 19:21

    Thank you to the Citizen-Record for helping raise awareness of Trigeminal Neuralgia and the first International Trigeminal Neuralgia Awareness Day October 7th. 2013. I want to thank Anne and others like her around the world who have decided to tell their personal stories of suffering with this horrific disease. They show great courage in making their lives public to raise awareness and let the world know and understand about Trigeminal Neuralgia. This is not new, but an ancient, poorly understood, often misdiagnosed disease without a cure and very little awareness. Simple things that the rest of us take for granted like brushing our teeth, eating, talking, or even a kiss on the cheek can trigger shooting pain that drive victims to their knees. Most people have to take a cocktail of drugs or have brain surgery to try and live a normal life and for many the drugs and surgeries do not work and often leave sufferers in more pain then before. For some there is nothing but a lifetime of unimaginable pain. Even the times when they are pain free, there is always the fear of the pain returning. Finding a cure will restore pain free life to millions of men, women and children around the world. Tnnme (Trigeminal Neuralgia and Me) and the TNAF (Trigeminal Neuralgia Awareness Fighters) have submitted an online petition to the World Health Organization asking for Trigeminal Neuralgia to be added to their 'Health Topics List'. This would reduce the barriers to effective health care and would raise awareness, increase understanding and give individuals and Health Care Providers access to resources and information. It would also enable researchers to conduct clinical trials to help find reliable treatments. No group can do this alone, we need everyone’s help to find a cure and end the pain.