Taking a break from regular content to share some notes here about my personal experience with a condition called Glossopharyngeal Neuralgia. Glossopharyngeal Neuralgia is a rare condition affecting 0.2-0.4 per 100k people per year, and as a result there aren't too blog posts about it. I'm sharing this in the hopes that it can be helpful to someone who might be Googling or asking some AI bot about this condition in the future. None of this is medical advice, just what I've been through personally.
In 2019 I began experiencing "electric shocks" in my face. After some Googling I first believed the pain was a result of Trigeminal Neuralgia (TN), but would later find out it was a more rare condition called Glossopharyngeal Neuralgia (GPN). The chronic pain caused by TN and GPN is similar, just in a different region of your face. Since chronic pain is often invisible it can be hard for others to empathize, but for reference TN ranks at the top on the McGill pain index. It's an extremely painful condition 🫠
Notes
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Flare ups can be triggered by yawning, talking, moving your head, cold weather, eating, or drinking (pretty much anything). For me the worst trigger was eating. Avoiding anything spicy or sour, and eating smaller bites at once helped reduce flare ups.
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There are a variety of medications that neurologists can prescribe to help reduce the side effects of neuralgia. The drug that helped me the most was an anti-seizure medication called Carbamazepine (also known as Tegretol). This drug was quite effective at minimizing flare ups, though I did have to consistently increase my dosage as time went on. By the way, if you're on Carbamazepine and you get covid, don't take Paxlovid! The combo will cause projectile vomitting – I found this out the hard way 🤮
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Accupuncture comes up quite frequently if you search for neuralgia treatments, but to be honest it did nothing to help my condition (although I did enjoy my sessions overall). I also met a woman in a bar in Mexico City who told me she treated neuralgia with bee sting therapy, but didn't investigate this further 🤔
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Not all hospitals are created equal. I had previously visited neurologists at other hospitals such as Sutter Health who were quite frankly useless. It wasn't until I got referred to UCSF that I felt like I was working with real experts who knew about this condition. If you can, get referred to UCSF as soon as possible by a GP and talk to Dr. Min Kang (Neurologist) and Dr. Edward Chang (Neurosurgeon) at UCSF.
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Get an MRI with contrast. Contrast is a harmless dye that is injected intravenously before an MRI in order to help create a clearer image of your brain. I originally did an MRI without contrast which ended up being totally inconclusive. My second MRI at UCSF done with contrast revealed an enlarged artery that was compressing my glossopharyngeal nerve. Bingo!
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Microvascular decompression is a surgery that can be used to alleviate pressure on the nerve if a compression is found. It's a brain surgery that involves placing a piece of surgical teflon between the artery and nerve, in essence creating a cushion to protect the nerve. The surgery takes around 4 hours, requires a two night stay in the hospital. Once you're sent home it's another 6 weeks of recovery. I had this surgery done in September 2022 and it resulted in 14 months of remission, though I am just began experiencing a relapse in symptoms this weekend.
This condition really sucks, and it is honestly disheartening to start experiencing pain again after 14 months of remission. On the bright side, as a last resort, GPN is treatable by severing the Glossopharyngeal nerve completely (with taste and swallowing as a possible side effects). I will keep this post updated with any developments.
Upwards and onwards.