The answer is simple, like many chronic conditions, Trigeminal Neuralgia (TN) steals the lives of sufferers and those close to them.
Here is my story: I led an enjoyable, fast-paced and full life before the first pain attack, four years ago.
I was up at 5:15 a.m.; taught a 6:00 a.m. yoga class and then split my day among meetings, phone calls and my computer. In the evenings I worked out, visited friends or took long walks. Weekends were a combination of relaxation and work obligations. 
I worked directly with the president of a major university, addressing every aspect of the educational institution. My position allowed me to represent the university from Beijing to Uganda. The breadth of my responsibilities was wide: athletics, student affairs, community and public relations. I also welcomed opportunities to work with the students. I loved my work; it was my vocation.
Then one evening, I experienced my first pain seizures. They increased in frequency and intensity until I could sleep only 2 to 3 hours a day, sitting up in a chair to avoid triggering a seizure.
Almost overnight the life that I knew, loved, and worked hard for, evaporated due to the pain and the debilitating effects of the medication I took to lessen the pain. I lost my cherished independence. I couldn’t drive; I couldn’t fly (and consequently did not see my father for two years). I stopped teaching yoga, the illness eventually forced me to resign from the position I loved. Everything from a cold breeze, a brush across my face or a small movement of my hand could trigger massive pain. I needed help with the simplest of tasks.
For months I saw doctors but there was no clear diagnosis, no relief, and countless failed treatments. I felt as if my world was shrinking. Finally, seven months after the first attacks, I was diagnosed with trigeminal neuralgia. One type of facial pain.
My story is not unique. Many go without an accurate diagnosis for months if not years. Many TN patients and their families adjust their personal and professional lives to deal with the pain; often feeling alone and misunderstood in their pain and suffering.
The solution is more research leading to breakthroughs in treatment and most important, curing or preventing TN and other facial pain. Unfortunately, financial resources have been inadequate to support research for TN and other types of facial pain. Two things can be done to help.
First, health professionals, particularly doctors, must become better informed about facial pain. A patient shouldn’t need to undergo needless treatments, procedures and therapies before receiving an accurate diagnosis. More information must be taught and shared in medical schools and other training opportunities allowing doctors to quickly and correctly diagnose and treat TN and similar facial pain syndromes.
Second, we must create a better-informed general public. If sufferers had some general knowledge about facial pain, it would greatly reduce the time spent Googling “electric pain behind eye.” Patients should enter into discussions with their physicians armed with knowledge and curiosity. Information gives you the confidence to better advocate for your treatment. Advocacy groups, such as TNA – The Facial Pain Association, should be supported and publicized more. We should be talking more about the work of these associations — and hence, trigeminal neuralgia itself, in this country and across the world. Since my diagnosis, I’ve returned to some aspects of my life, but I’ve placed myself on “sabbatical” from others. I’ve had numerous surgeries, treatments, but now I live on medication that zaps my energy levels and dulls my cognitive capacity. The seizures still occur, more frequent than I would like, but I remain hopeful that a cure can and will be developed. I rest these hopes on YOUR support of the Facial Pain Research Foundation (www.facingfacialpain.org) and those organizations that provide information and advocacy.
Watch below for more information on Frances’ experience with TN.