Many thanks to our guest writer Pamela Jessen for sharing her journey below on living with and fighting trigeminal neuralgia.
The number of invisible illnesses that millions fight around the world is staggering. The suicide disease, as trigeminal neuralgia is commonly known, is one of those illnesses. I’m one of the approximately 12 per 100,000 per year who have been diagnosed with it.
To describe the extent of the pain and debilitation trigeminal neuralgia causes seems impossible. It’s a form of chronic pain “that affects the trigeminal or 5th cranial nerve, one of the most widely distributed nerves in the head.” It’s a type of neuropathic pain “that causes extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as two minutes per episode.” Beyond the intense physical pain, these attacks drain those of us who suffer both mentally and emotionally. They can render us helpless as we try to manage our day-to-day lives.
My pain experience
When pain attacks me, I first feel it just under my right cheekbone. Then it moves into the right eye socket and into my right sinus cavity. I’ve lived with trigeminal neuralgia flare-ups for almost 14 years now, but they were once so few and far between that I didn’t know of a name to put with them.
They were easy to brush them off: maybe a sinus thing or maybe even a dental thing, I rationalized. They were sporadic and would leave quickly, so I focused on my other chronic health conditions. But when I began to have more frequent and intense flare-ups this year, I was forced to confront the issue.
My treatment journey
I began my prescription journey with carbamazepine, a first-line therapy. That stopped working fairly quickly, so my healthcare team prescribed topiramate. It worked for me until recently when the flare-ups became more frequent. That meant my healthcare team needed to move me on to step 2 in my journey: Botox combined with medication.
Botox aka Botulinum toxin type-A can be an effective treatment for trigeminal neuralgia. Because of my particular symptoms, my healthcare team injects Botox along my hairline on the right side near my eye. It’s never injected directly into the nerve, as there is too much potential for drooping and paralysis.
Some patients receive immediate relief; some feel relief after a month or longer. For me, it took almost 6 months before my flare-ups abated, but that relief didn’t last very long. A major – and quite unexpected – wave of pain hit me during a severe back spasm. That powerful combination landed me in the hospital. I hate going to the hospital in the first place, and this particular experience happened on a weekend motorcycle trip with my husband. Needless to say it was a disappointing end to a great trip.
When one of these flare-ups hits me, the pain begins as a mild ache just under my cheekbone. It then spreads to my eye socket, my sinus cavity and under my entire cheekbone. The ache is gentle at first, almost teasing what’s to come, and then metamorphoses into something relentless. There’s no one place to pinpoint where the pain is at that point. It’s just there, and it offers no break. It feels like tiny little hammers are striking me – not quite enough that the actual strike is painful, but that the endlessness of it is. There’s also no rhyme or reason on how long it’s going to last. Sometimes it’s 30 minutes. Sometimes it’s 12 hours.