What is trigeminal neuralgia (TN)?

TN is an excruciatingly painful and debilitating condition, known as "the suicide disease."

It is regarded as the most painful condition that is known in the medical world. It is more painful than kidney stones, giving birth or a heart attack.

It is a disorder of the trigeminal nerve in the face, which results in its overreaction to every day stimuli, such as talking, eating and light touch.

TN triggers a violent, electric shock-like pain, which can last for a few seconds to a few minutes and repeat in episodes lasting weeks and months.

The pain can also be described as stabbing, shooting, burning, excruciating, and unlike any other pain previously experienced.

Normal painkillers, even morphine, have no effect and initial treatment with anti-convulsant drugs can have very unpleasant side effects.

When these medications cease to be effective, or the side effects become intolerable, various types of surgical procedures are carried out but to date there is no known cure.

Although uncommon, children and babies can also have TN.

My sister Gillian lives with TN.

She had a Micro-vascular Decompression (MVD) brain surgery in 2007 in the hopes of putting an end to her TN.  The MVD surgery is the closest surgery to a cure and it involves a neurosurgeon attempting to wrap the trigeminal nerve in the brain with Teflon in the hopes of relieving any pressure from surrounding blood vessels. For a few, this is the solution, however for most the pain returns.  Gillian was pain free for one year.

Her pain can be described as heavy, aching, stabbing and burning and she experiences intense pain in all three trigeminal nerve branches, including teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, "behind" the eyes, and scalp. In addition, she also experiences shocks and stabs.

Her pain is "triggered" by light touch, breeze, heat, cold, and stress. Her pain is often continuous, and periods of remission are rare.

In 2012, she underwent a Radiofrequency Rhizotomy. This is a brain surgery where the neurosurgeon inserts a metal rod through the face up to the nerve and attempts to severely damage the nerve by burning it.  One oft he negative side effects of this surgery is numbness, which is similar to phantom limb pain, and this numbness can be more painful than the initial nerve pain. Full TN pain returned after 8 months.

So these last ten years (since the first diagnosis) have been a journey for us in many ways. We have lived with the lows and highs of stabbing, burning, electrical pain, the hope an MVD would cure that and the disappointment that it didn’t.

My sister is tougher than the rest.  As many of you know, we started our own business four years ago. She works more than full-time.  She was also a very serious runner, logging on average 70 miles a week (on the treadmill, of course), but has recently changed sports and has fallen in love with Crossfit. She lives with and manages pain I don’t think many of us can imagine.

It is a lonely, extremely painful, relentless, unpredictable and exhausting journey for my sister.

We need your help to find effective treatments and maybe even a cure for TN. 

October 7th is International Trigeminal Neuralgia Awareness Day. On this day, Gillian and I are going to do a famous Crossfit workout called ‘Murph’. This workout involves a 1 mile run followed by 100 pull-ups, 200 push-ups, 300 squats and ends with another 1 mile run.   This is a brutally long and challenging workout and we do it to recognize those suffering from this chronic pain condition.

If you would like to support us, we are collecting donations for the Facial Pain Research Foundation to fund the search for answers and relief.