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In Your Face Trigeminal Neuralgia: One Young Woman’s Journey to Climb Past the Pain

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“If my story can inspire someone or give a little bit of hope – I think I’ll be the happiest person in the world.”

Karolina Toman was a typical young woman living in Warsaw, Poland, with much of her time focused on her passions: horses and mountain climbing. However, after her first trigeminal neuralgia attack in October 2014, at age 27, even the easiest activities became difficult for Karolina, including the two things she loved most.

“I had never heard of trigeminal neuralgia,” said Karolina. “It came unexpectedly, bringing so much pain to my life that it was almost unbearable. Attacks were caused by almost everything; mainly stress, wind, cold, eating, drinking.” Fortunately, she was quickly directed to a neurologist and was properly diagnosed in November 2014. “My medications started to work and I found some relief. I cannot even imagine how people deal with TN when their bodies do not respond to treatment. They’re real fighters. And they do REALLY love life”.

Following her diagnosis, Karolina met other TN patients through a support group on Facebook: “I was amazed with their stories, but there was still so much pain in their posts, so much sadness. Then, an idea popped into my head. I decided to cheer them up a bit.” Karolina decided it was time to get back to her normal life. She decided to visit the mountains – in winter. “I started training in my home city, in Warsaw; usually it was running, in temperatures below 0 degrees. It was painful, but I learned what my triggers are. I found out that I suffer most from a change of temperature, not just cold weather. It gave me some hope.”

Within a few weeks, Karolina was climbing again, beginning with some easier mountains: Koscielec (7,070 feet above sea level) and Zadni Granat (7349 ft.). “The first day was horrible. Whenever the wind blew, I had tears in my eyes. But the next day – well, it was pure mountaineering – with a smile on my face and a lot of strength.” Then she made herself a banner with a positive message for other TN patients: “I wanted to send it to TN sufferers, just like me. To show them that we still can dream our dreams! I wanted to honor those who have the worst types of TN, to show my support and to raise awareness among those who do not have any idea that something like trigeminal neuralgia even exists.” Her banner (featured on our front cover) went viral within the TN community. Karolina did not expect such a big response to the picture, saying: “It was unbelievable!”

Motivated by the positive reaction to her photograph, she decided to run a TN support group in Poland, called trój-Dzielni. “Trojdzielny means trigeminal, but when you divide it into two: you have troj (tri) and dzielny (brave),” a happy coincidence if you ask Karolina. “We’re still small, but I believe the group will grow. And I’m still trying to get people interested in TN. Awareness is, for the moment, the most important.”

In February 2015, Karolina reached the Rysy summit; at 8199 feet, it is the highest mountain in Poland. She also started regular dressage trainings on her horse with the help of her trainer, Ewelina Kweitowicz.