By Carol Levy, PNN Columnist

The start of another year started me thinking about my 42-year fight against trigeminal neuralgia (TN) and how things have changed in its diagnosis and treatment.

I was 26 when the pain started. It came out of the blue, like a lightning bolt inside the skin of my left temple. It was horrendous, lasting maybe 20 seconds or so, and then it subsided. After a clinic doctor diagnosed it as trigeminal neuralgia, I was repeatedly told it could not be TN because I did not meet the criteria for the diagnosis.

At that time, it was very simple: TN pain had to be in a specific anatomical area. Mine was. The pain also had to be spontaneously triggered by touch, no matter how slight. Mine was. But you had to be at least 60 years old or, if you had multiple sclerosis, over age 40 to have TN. I was only 26. Too young.

So, regardless of the pain being in the right place and occurring in the proper fashion, it had to be something else, although they had no idea what that might be. It took more than a year before someone finally recognized it as trigeminal neuralgia, despite my youth.

Over the years the definition and diagnostic criteria for TN have changed. There are now two recognized types of TN:

• Trigeminal Neuralgia 1: Intense, stabbing pain attacks affecting the mouth, cheek, nose, and/or other areas on one side of the face.

• Trigeminal Neuralgia 2: Less intense but constant dull aching or burning pain.

You can have both types of TN. I have constant pain, as well as spontaneous and triggered pain. Neither type includes an age factor. This makes it easier for a young person to be diagnosed with TN today. 

Changing Treatments

Not only has the definition changed, but so too have the treatment options. When mine started, there were less anti-convulsants to try, the first line of treatment for TN. Now there are many new medications, including botulinin (Botox) injections.  

Over the years I had many operations, some of them no longer in use. Now there are gamma knife and cyber procedures, things not even a glimmer in someone's eye when I was first diagnosed or being treated. 

Reflex Sympathetic Dystrophy (RSD) is another pain disorder which has come a long way. Even the name was changed, from RSD to CRPS (Complex Regional Pain Syndrome).

In 1981, I entered a residential pain program. There were only 8 of us. One was named Joanne, who had very weird, unbelievable symptoms and complaints, so weird even the doctor had trouble believing her.

Joanne said she had tremendous pain throughout her body, and trouble controlling her bowels and bladder. She insisted it all started right after a statue had fallen on her foot. It sounded fanciful at best. She seemed a perfect example of pain being psychological. 

If that happened today, Joanne’s complaints might be taken more seriously and she could be diagnosed with CRPS. But at that time, it was a disorder that did not appear on anyone's radar. 

Since then many new medications and treatment options have been devised or added to the armamentarium against CRPS, such as ketamine infusions, intrathecal pain pumps, hyperbaric oxygen therapy and bisphosphonates. The same is true for many of the other pain disorders. Research is ongoing, new medications and surgeries are being developed. 

We often lament that nothing new is being done for us. Where is the research? Where is the treatment that will finally give us relief? 

It can be hard to see sometimes where we have been vs. where we are now, much less where we may be going. But history shows that more progress is being made than most of us may realize. And that is a good thing. We have to look to the past to see not only how far we have come, but how much farther we still have to go.   

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.