Imagine waking up, a normal morning unlike any other. You get out of the shower, wipe the foggy mirror with a towel, grab your toothbrush, look into the mirror, and suddenly, you feel this sharp, unimaginable, excruciating pain on your face that gets progressively worse with no end in sight.
This is exactly what happened to Karl Kroeppler. After a couple of weeks of this odd excruciating pain, Kroeppler went to a Scottsdale outpatient clinic, where the doctor diagnosed him on the spot with trigeminal neuralgia (TN). Kroeppler was lucky—since the symptoms of TN are similar to many other diseases and conditions, it can be challenging to receive a correct diagnosis. An estimated 40,000 are diagnosed in the U.S. each year. It tends to appear more often in those over the age of 40, and is slightly more common in women.
According to the Facial Pain Association of Florida, TN, also historically referred to as tic douloureux, Fothergill’s disease, prosoplasia, or trifacial neuralgia, TN is a chronic pain condition affecting the trigeminal (fifth cranial) nerve, which carries sensation from a person’s face to their brain. It is not life-threatening; however, it is considered to be one of the most painful afflictions known to the medical field. It has been dubbed “the suicide disease,” because some patients believe death is the only relief from the relentless pain. There are different classifications and types of trigeminal neuralgia. The typical, or “classic,” form referred to as Type 1 or TN1, causes extreme, sporadic, sudden burning, or shock- like facial pain that lasts anywhere from a few seconds to as long as two minutes per episode.
Episodes can be in quick succession, lasting from a few seconds to a couple of hours. The second type, known as “atypical,” Type 2, or TN2, can cause chronic, constant aching, burning, or stabbing pain of varying levels, leaving one feeling physically and mentally incapacitated. For Kroeppler, he lives with intractable trigeminal neuralgia, experiencing episodes of TN1 and TN2, which afflicts about 2% of all those living with this disease. An Arizona Masters graduate in fine arts and an educator, Kroeppler finds solace in his art. It has given him the platform to teach others about this painful, relentless invisible disease.
TN affects the entire family. While it often changes the behavior of the person who is living with it, their young children often do not understand, and a spouse can feel helpless and hopeless, not being able to help. Physicians offer secondary medications (some with permanent side effects) which sometimes work, but often do not. Pain medication needs to become stronger and stronger, to the point where they are no longer effective at all, and some TN sufferers lose their life from an accidental overdose as they continually increase the medications in search of relief from the symptoms. When medications no longer work, surgeries are often discussed.
During Kroeppler’s 13 years of affliction, he has experienced numerous surgeries, procedures, and medications. The latest procedure, percutaneous rhizotomy, has offered some hope. This involves compressing the trigeminal nerve to disrupt the pathway causing pain. It essentially destroys the nerve. According to Kroeppler, this procedure has left him unexpectedly, pleasantly numb and happy.
“I can now brush my teeth, touch my face, splash water on my face, take showers, and wear hats without any pain,” he says. He is, however, always living with the fear it could come back at any moment. For Kroeppler, his art and teaching have helped him cope. “It is a terrifying, hopeless feeling to be rolled into an emergency room, screaming uncontrollably, only to have the nurses, attendees, and doctors not know how to treat you.
They are often unaware of trigeminal neuralgia. My art [and] my research has always been a source for understanding something greater than I am. It gives me something greater to focus on and something to distract me as well from the hand life has dealt me,” he shares.
Unpredictable symptoms vary from mild to excruciating pain, including intense, stabbing pain, and electrical shock-feeling. The symptoms can last intermittently for a few seconds to hours, or chronically for months to years. It can affect one or both sides of the face. Pain can be triggered from a breeze on the face, a caress of a hand, eating, sneezing, coughing, or brushing teeth. Any type of touch or vibration to the face can trigger intense flashes of pain.
The exact cause of TN is unknown; however, it is sometimes caused by direct damage to the nerve or secondary damage from surgery, chemotherapy, radiation, and nerve-related diseases.
As for Kroeppler, he is thankful to Dr. Boulis at Emory University and Dr. Benedict at WellStar, Ernest G. Welch School of Art and Design, and of course, his family. “They all have played such an integral part of my survival. I would not be here today without them,” he says.
For more information locally, check out Arizona Pain Center or Barrow Neurological Institute.