On June 11, 2006, Michaela O’Connor experienced an extreme, sudden pain along the right side of her face. Being only 19 years old and just about to complete her first year of college, she thought it would subside. It did not. Three months later, doctors diagnosed her with tic douloureux, more commonly known as trigeminal neuralgia (TN).
TN is a nerve disorder that affects the fifth cranial nerve. Distinguished by an abrupt, electric shock-like, stabbing pain, TN pain usually comes and goes throughout each day while varying in severity.
Michaela has a rare form of the disease, as the pain and severity never cease. Anything touching the right side of her face, whether be a strand of hair, the wind or water, is agonizing. Opening her mouth, smiling, brushing her teeth or coping with cold weather make the pain unbearable.
During the past seven years, Michaela has tried numerous therapies to control the pain. She underwent four brain surgeries and tried over thirty different medications. She changed her diet, eliminating gluten, sugar, and caffeine. She tried complementary treatments. Unfortunately, she has received little relief.
Michaela’s fourth surgery was an extremely rare one, especially for TN patients. Her neurologist horizontally severed the trigeminal nerve in an attempt to make the nerve no longer function, hoping to reduce or end Michaela’s pain. It was considered a success.
While Michaela still has severe pain in about 65% of her face, she is now completely numb on the right half of her teeth, lips, tongue and forehead, as well as her right eye and ear. She has accepted that she will never be able to experience certain things like rolling down her car window to feel a breeze or attending an outdoor sporting event. Instead, she focuses on what she can do. She views the simplest of activities, such as being able to play outside with her nieces and nephews, as gifts. Says Michaela, “While I do have trigeminal neuralgia, trigeminal neuralgia does not have me. I will not be defined by an illness.”
Michaela avoided talking about her opioid-induced constipation (OIC) for years. She believes, though, that someone has to speak for those suffering from OIC, and she chose to put aside her qualms and share her story.
Michaela has several chronic pain conditions and has been on medications since she was 19, when she was diagnosed with trigeminal neuralgia. She started daily opioid therapy at 21, after her second failed brain surgery. It did not take more than a week for OIC to begin, and although she no longer takes opioids, her digestive system is still suffering the effects of OIC.
She was a 21-year-old living the life of a chronic pain patient, willing to endure multiple brain surgeries to try and control the pain. So she did not think opioid therapy was a big deal at all – what’s another pill? Her stomach was constantly bloated and extremely uncomfortable all the time.
Despite going to the drugstore to buy every over-the-counter laxative product available, she felt no relief whatsoever and was simply too embarrassed to discuss the situation with her doctors. They knew every aspect of her life, from her last menstruation to her last date of intimacy – did they really need to know her bathroom issues too? Was nothing sacred anymore?
Regardless of her attempts to keep her OIC under the radar, it got to the point where she had to tell her primary care doctor in order to get some relief. She ended her unsuccessful run with opioid therapy about three and a half years ago. However, she still suffers the effects of OIC just as badly as she did when she was on opioids, despite her best attempts to control it. She has tried both western and eastern medicine, and everything in between, to no avail. Being in chronic pain is difficult enough – living with the effects of previous medications for the rest of her life feels extreme. Her hope is that one day individuals will not have to suffer the pain she does!
Michaela’s resilience, determination and fortitude make her an inspiration. Despite everything she has endured, she is not giving up. She looks for things that make her happy, like playing the guitar and listening to music, and does them every day. She has learned the importance of setting goals for herself, bringing her a sense of accomplishment and fulfillment and providing purpose to her life.
Organizations such as Trigeminal Neuralgia Association and the U.S. Pain Foundation have been helpful resources. The online resource, Living with TN, connects her to others dealing with similar pain. Realizing she is not alone has been therapeutic. It is her wish that anyone afflicted with chronic pain or TN find comfort, support and validation.
She is able to move forward with hope that her experiences and journey can help and inspire others who are suffering. She wants to use her story to raise awareness and bring understanding to what those with pain and illness endure. She hopes the medical community will continue to research rare disorders and make medical advances to help her and millions of others.
“My mom says I am her hero and role model, but I just consider myself an ordinary girl suffering from a severe case of a chronic condition. I am living my life to the best of my ability under the circumstances I was given. I may struggle with pain every day, but I survive each day. I refuse to give up, and will continue to move forward showing the world I can conquer anything that comes my way.”