Glossopharyngeal Neuralgia

"I find keeping perspective and a 'correct' attitude key to managing GPN...." Maxwell Gomera

Keeping perspective: My story

One of the great unmissable of being physically unwell while living in ‘The West’ is when your visiting African friends accuse you of suffering a ‘Northern disorder’ and your sister suggests you go for ‘the test.’ This vignette dramatises the mindset I have lived with for five years. A combination of how little is known about Glossopharyngeal Neuralgia (GPN) pitted against formidable odds. It occurs to me that there may be others out there suffering wrong diagnosis or friends, family and society that understands too little.

Five years ago, I knew something wrong was going on, I just couldn't fathom what. GPN is a disorder beautifully engineered to cause maximum pain but elude diagnosis. It took Specialist Doctors some four months to reach correct diagnosis. As it turns out, I was lucky: others go for years or a lifetime without correct diagnosis. I was to learn that GPN is a “rare chronic pain syndrome” that causes intense, shooting pain in the back of the tongue and throat, tonsillar areas, and middle ear. The pain is “due to malfunction of the glossopharyngeal nerve (9Th Cranial Nerve), which moves the muscles of the throat and carries information from the throat, tonsils, and tongue to the brain.”

Glossopharyngeal neuralgia usually begins after age 40 and occurs more often in men. For me it was a ripe young age of 37! Often, its cause is unknown. However, it sometimes results from an abnormally positioned artery that compresses the glossopharyngeal nerve near where it exits the brain stem. Rarely, the cause is a tumor in the brain or neck.

My experiences have been painful, often enlightening but never one I would wish on anyone. Fortunately, my boss understood the need for specialist attention. I visited some of the best ENT and Dental surgeons in Africa and Europe. For a while, I was subjected to a ping-pong between ENT surgeons and Dental surgeons – each of whom thought mine was a Dental or ENT problem respectively. Both plausible. Neither correct. Not entirely at least. It must have been frustrating for them: they just couldn't figure out what it was. 

I am a true believer in the wonders of modern medicine but I must say my faith was pushed to the limits, threatening to set me on a path from which I could never return. 

I kept faith in the power of prayer. As “luck” would have it, I bumped into a General Practitioner who had come across an Australian patient with similar condition. He suggested I go back to my ENT surgeon and ask him to investigate the possibility of Trigerminal Neuralgia (TNG). The diagnosis was to turn out wrong but close enough. But the medication was a God-send! After taking the meds I managed, for the first time in over three months, to swallow solid food with no pain in the throat – and I slept like a baby! Although the two are different disorders, the drug therapy for TNG is equally effective on GPN.

Within three weeks, the pain disappeared. Yaay! Kwakuhle! Zvangu zvaakufaya!

Over the years, I have suffered GPN attacks in cycles of approximately 24 months – each lasting between 3 to 8 weeks. Unfortunately the drugs tend to become less effective with age – and the pain more unbearable. The worst agony is watching my children, wife and friends trying to cope. Their patience and sympathy unparalleled… Your kindness is not taken for granted! 

Last week I visited a neurosurgeon. We both agreed that the drug therapy is increasingly becoming a less viable option. I will have to go for the “biggie” – the knife and surgical option. Fortunately for me, there is one that offers much hope. Few neurosurgeons have vast experience operating on GPN patients, simply because there aren't too many of us suffering GPN. Fewer still are willing to try. But I will take my chances!

In the unlikely event that you know someone who suffers the same, I hope this note offers some hope, changes your perspective, helps with correct diagnosis, or simply reduces the stress on you.

To my African friends, GPN is not an exclusively northern disorder. To my sister, it is not HIV or even related. To my brother Henry, it is not cancer – although in some cases the brain tumour might suggest so. And to my children – No, GPN is not fatal. The pain drives me nuts. But the disorder is neither fatal nor inheritable. In the literature, they claim GPN causes the worst pain known to date – if ever there is a way of measuring pain intensity. I have no doubt it is a biggie, but I will be fine.

Maxwell Gomera