We have many group leaders in different areas, please select appropriate area below for details, and to get to know a little about each leader. Please feel free to contact any of the leaders.
National Coordinator, Saskatoon Group
Gail Flynn
help@catna2.ca
saskatoon@catna2.ca
Saskatoon co-coordinator
My journey with Atypical Trigeminal Neuralgia started in March of 2013. One morning I woke up feeling quite ill with a very bad ear ache. After seeing a doctor who assumed it was an ear infection I was given antibiotics, but instead of getting better the pain just became worse and traveled from my ear into the left side of my head. Stronger antibiotics were used with no luck, just continually worsening pain. Eventually my fever went away and I was left with unbelievable pain in my forehead, cheek, ear and side of my head and it continued to worsen day by day. The first specialist I saw was an ENT and he said I had TMJ, the second was a neurologist who suspected MS but when the MRI did not show that he adhered to the first diagnosis of TMJ. Thankfully my family doctor did not believe this and a year later I saw another amazing neurologist who diagnosed me with atypical trigeminal neuralgia due to having the shingles virus in my inner ear (no outward signs of shingles anywhere). The pain continued to get progressively worse for the first couple of years. I tried several medications but I either couldn’t take them or they left me in a place of not being able to work. All I took was amitriptyline, those were very hard days. Then I was given the gift of a peripheral nerve stimulator, which helped me to cope for several years. Eventually that was not enough. I was having over a hundred attacks a day, and the pain was unrelenting, I was barely functioning. My depression which I always found to be related to my pain was also bad. I had to quit working and go on carbamazepine and address my depression. This past year was a new opportunity. I changed out my peripheral nerve stimulator for a ganglion nerve stimulator. I feel so fortunate to have these wonderful devices available to me!
Through this journey one of the things that was so important to me was the support of others! At home, at work, and CaTNA support groups. I traveled to Regina’s support group several times and I am very thankful for Faye. But traveling that far was too difficult so I started the Saskatoon support group. This group has been the biggest blessing to me and being a support group leader has led me to meeting some of the most amazing people along the way. It has given me the opportunity to share my story in the newspaper as well as on AMI tv.
When Jan retired, I took on the very big challenge of National Coordinator. I still live with never ending pain and the medication leaves me with a very foggy brain. But I will do my best to keep the Canadian Trigeminal Neuralgia Association moving forward.
White Rock/South Surry, BC
Charlee Yoshizawa
whiterock@catna2.ca
Support Leader
My husband and I run a commercial turkey farm in South Surrey, BC which keeps us busy.
I was diagnosed with TN in 2012 and found the CATNA website started by Jan Williams who lived in White Rock. I went to her meetings when I was suffering with pain and I am grateful for her support and with all her knowledge on TN. I was on Trileptal (oxcarbazapine) to ease the pain but didn’t like the side effects so I decided to get the MVD after the MRI showed a compression on the Trigeminal nerve. In November 2015, I had the surgery done by Dr. Kaufmann in Winnipeg and have been pain free since.
When Jan moved to Calgary, I took over her support group meetings in 2015. I’m glad to be able to help people who are suffering from this facial pain like I experienced. I feel the support and knowledge gives people hope.
Regina, SK
Faye Meyer
regina@catna2.ca
Support Leader
My journey with TN started in 1999 when I had a stroke on a ski holiday with my family. Two weeks later I developed TN pain. I saw a neurologist and was given a number of medications which didn’t help with my pain. There were a lot of side effects. I saw a different Dr. and he referred me to the Mayo Clinic. I had more MRI’s and they told me I needed a Motor Cortex Stimulator Implant. I waited 10 years to have it done in Winnipeg because of the cost. The Dr. did a trial over a year to determine if I was a candidate for the surgery.
I still have classic TN pain which I take B vitamins (Methyl-12 and Benfotiamine) . I cut out sugar and artificial Sweenteners. I try to exercise everyday.
I watch the Barometric Pressure. Cold and wind brings on the pain.
In 2007 I was looking for a support group in Regina and contacted Jan Williams . She told me there wasn’t a support group in Regina and suggested I start one. I did and am still here.
St. Charles, ON
Sandra Trodd
stcharles@catna2.ca
Support Leader
My name is Sandra Trodd and I live in St Charles, Ontario with my husband. I’m a mother of three and grandmother of three boys living in BC. My husband and I enjoy traveling and as he works part-time as an Expedia Travel Consultant, we’re often cruising. I retired from my life’s work as a paramedic in 2003 due to disability. I use a walker or wheelchair depending on what I need to accomplish. I was diagnosed with type 1 TN in the early 2000s and had a MVD at Toronto Western Hospital. I had about two pain-free years when it recurred. I had a second MVD and I was well for about 15 years. In the last year or so I started experiencing the same symptoms as previously. I’ve tried all the meds that there are for TN and have had awful side effects. The neurosurgeon that I saw recently recommended that we try a glycerol injection after a few diagnostic tests are performed. TN is difficult to live with
Toronto, ON
Kathy Sommers
toronto@catna2.ca
Support Group Leader
I’ve been the Toronto/York Region Group Leader for the last 25 years. I’ve had
Typical and Atypical TN for 28 years. I started on Carbamazepine & Baclofen for a year. I had no pain relief and too many side effects so I slowly stopped. I did acupuncture for a few years. There was no change. I had brutal pain daily and then it started at night. I coasted through the next few years without medication then started
on Gabapentin without much change. I had MVD knowing it might not work for Atypical and it didn’t work for me. So I went back on gabapentin with some days better that others. Now my pain has changed. The last 3 years I actually have good weeks; first reprieve for me in 28 years. I supplement with CBD oil and that works for me. I’m grateful to be pain free most days. I have great family and friends who understand my journey. I don’t worry about those who don’t understand. I keep stress free. I don’t worry about the things I can’t change. I’m grateful for my TN family. ONE DAY AT A
TIME!
Niagara Falls, ON
Brenda Sharp
niagara@catna2.ca
Support Group Leader
Brenda refers to herself as a “TN Warrior”.
Trigeminal Neuralgia struck at an early age, and by the time she was in her twenties, she had maxed out on medications and undergone 3 surgeries. An MVD in 1986 proved successful and provided many years of pain-free life.
There was limited information available back in the 80’s. She reached out through newspapers and magazine articles to find other TN patients and started her own TN Support Group in the Niagara Region in 2000.
Members meet every other month in Niagara Falls, but email each other regularly.
When the Facial Pain Research Foundation was founded, she started organizing local fundraisers to raise money for research. LYFO Canada will give Canadians a chance to assist LYFO in Chicago, the largest fundraiser in the world for the FPRF.
Brenda believes that raising awareness is just as important as research and has helped with the lighting-up-teal campaign each year on Oct 7th which is International Trigeminal Neuralgia Awareness Day.