Living with Trigeminal Neuralgia

There are many different Chronic Pain conditions. One I would like to introduce you to is Trigeminal Neuralgia. Trigeminal Neuralgia is an invisible illness and is described by the Mayo Clinic as “a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. If you have trigeminal neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain.”

Living with Trigeminal Neuralgia

The Flare-Ups

I’ve been having flare-ups of Trigeminal Neuralgia for almost 14 years now, but they were so few and far between that I didn’t bother to put a name to them at the time. It was easy to brush them off – I thought it may be a sinus thing, or maybe a dental thing… As long as the flares ended quickly, I dismissed them. I had other health issues to deal with and I didn’t need to add more. Unfortunately, over the last 6 months or so (give or take a few months), I’ve had flare-ups that have been so much more frequent and I decided I had to finally talk to my doctor about them.

When I get hit with one of these flare-ups, it starts as a mild ache just under my cheekbone. It then starts to spread to the eye socket and sinus cavity. It often spreads into my jaw, and down into my esophagus. The ache is gentle at first, almost teasing, and then it becomes absolutely relentless. There’s no one place the pain can be pinpointed to. It’s just… there, and it’s steady without a break. It begins to feel like tiny little hammers are hitting me. And because there’s no one place that hurts more, there’s no place to put ice to decrease the pain. Neither ice nor heat helps the pain, and neither do much for distraction. There’s also no rhyme or reason as to how long each flare is going to last. Sometimes it’s 30 minutes, sometimes it’s 12 hours. No matter long it goes on for, it feels like I’ve been punched in the cheek over and over and over, but the bruises are all on the inside. The gentlest touch on my skin is agony, yet all I want to do is press my fist into my face as hard as I can at the same time.

Experiencing Flares with Trigeminal Neuralgia

The Treatment Options

We’ve tried a couple of things – I was taking Carbamazepine, which is the first line drug, but it stopped working fairly quickly. Now I’m on one called Topiramate. We have to be very careful with me taking new medications due to the other drugs I already take for pain, etc. The Topiramate had been working up until recently, but with flare-ups happening far more often than in the past, it appears that it is no longer effective either. I even tried Botox with no success.

I now have an appointment with a Neurosurgeon to discuss Micro Vascular Decompression Surgery. It has a high success rate with the lowest rate of facial numbness. In this surgery, a small Teflon sponge is inserted between the trigeminal nerve and the neighboring artery. Other surgeries that are available to treat Trigeminal Neuralgia include Sensory Rhizotomy which is the irreversible cutting of the trigeminal nerve root at its connection to the brainstem, Gamma Knife Radiosurgery which is a non-invasive outpatient procedure that uses highly focused radiation beams to destroy some of the trigeminal nerve root fibres that produce pain, and Peripheral Neurectomy in which the nerve branch is cut. All three of those surgeries carry a side effect of facial numbness, some to quite a high degree and that’s a complication I would prefer to avoid.

I’m Hopeful

The idea of brain surgery makes me nervous but excited at the same time. I don’t like the idea of my skull being cut open, but if the Surgeon can fix this problem so that the nerve no longer sets off the excruciating pain flares, I’m willing to endure it. I just want to be able to live with as little pain as possible.

Maintaining Hope while living with the  Chronic Pain of Trigeminal Neuralgia

I maintain a positive outlook and attitude, and as my motto in life goes… There is always hope!

About the Author:

Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at  She also writes for The Mighty, and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC.  She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie. 

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