My Face is on Fire
With Trigeminal Neuralgia (TN), I get a lot of different pain symptoms, including but not limited to tingling, pressure, numbness, burning, swelling, stabbing, etc. Burning is on the top of my list.
My face is on fire. It feels like it is literally burning from the inside out. I expect to look in the mirror and see flames coming off my face and dripping, melted flesh. I am always surprised when I look and all I see is me, with a red face and a very red right cheek. If you touch my cheek (that does not feel good, please don’t do that) I can feel the heat burning my fingertips. I can feel it burning in my cheek, tongue, eye, ear, mouth, and teeth. It is rather unpleasant.
Nerve pain, or neuropathic pain, can cause burning sensations when damaged or dysfunctional nerves send incorrect signals to the brain. The brain then interprets these false and even exaggerated signals as burning or heat.
Awesome, so my face is on fire because of a miscommunication in my nervous system. My parents used to tell me I was exaggerating when I told stories as a child, but this is a whole new level for which I have no control. My childhood self could never have dreamed up a Trigeminal Neuralgia story like this.
My face is also frequently red. I don’t know if that’s just a reaction to the pain or that I was actually successful in mentally tuning out the fire happening on my face so I can pretend I’m normal for a short time. I get asked a lot if I am hot as I’m glowing with sweat. In most cases, my answer is no, it’s just my face is hot, the rest of my body is actually nice and cool. I do not enjoy always looking like I just ran a mile, face red, out of breath, and struggling to talk (I am not a runner). Over the years, I’ve gotten used to it, but as much as I like to tune out the burning and redness, I can’t always avoid a mirror and inevitably, someone always asks if I am ok.
Top 5 Ways to Reduce TN Face Burning
I’ve learned a few tips and tricks over the years to help with Trigeminal Neuralgia face burning. As always with TN, I’m still learning how to manage my symptoms and experimenting with what will help. I hope these tips help you as well!
1 - Laying down with a cooling patch
The cooling patches (also known as fever patches) are by far my best find. They are very light and you barely feel them on your face. When any additional pressure to the face causes pain, these are amazing. When I am at home, I keep them in a fridge for an extra boost of coolness. Since they are individually wrapped, I can also keep these in my purse, bags, car, etc. These lovely patches have been, by far, the best at helping to cool my face down. Unlike heavy ice packs, I can also fall asleep with one and not worry. They also last several hours and penetrate the coolness into your skin for a longer lasting effect than an ice pack. I have these on subscription on Amazon so I’ll never run out. I also keep a mini fridge in our upstairs hallway so these lovely patches are always within reach when I need one.
2 - Laying down with an ice pack
My TN likes ice. Others do well with heat. For me, heat makes my pain and symptoms worse. When your face is already on fire, heat only makes it worse. I’ve tried many different ice packs, but have found that ice packs with clay beads and are flexible tend to work better and don’t have hard edges that hurt your face.
3 - Laying down on my left side
For some reason, when I lay down on my left side (my TN pain is on the right), my symptoms start to lessen. It’s not instant, but over time the pain and symptoms (usually) start to lessen. They don’t go away and I’m still struggling, but it helps to take the edge off.
4 - Medication: Nurtec ODT
I am lucky enough to also have migraines on top of my Trigeminal Neuralgia. Yay me! I started to take Nurtec (Rimegepant) to help with migraines and discovered that it also greatly lessened the burning in my face! Nurtec is a drug class called calcitonin gene-related peptide (CGRP) receptor antagonists, or gepants. It works by blocking pain signals associated with the CGRP protein to reduce migraine pain and other symptoms as well as future attacks.
5 - Protect your face from sun and wind
Both heat from the sun and pressure from the wind hurt my face. If the wind is above 5 mph, my face will get hot and it will feel like a severe sun burn. The sunlight hitting my face is worse. If my right cheek is exposed to the sun, even for a short amount of time, the whole side of my face catches fire. The rest of my day (or next several days) are ruined. Rest is needed, meaning I’m laying down and not able to accomplish anything. To help prevent this, I wear wide-brimmed hats when I’m outside in the sun, especially in warmer weather. I’ll also wear a multiclava (or bring one with me) in case the wind picks up and I need an extra level of protection for myself. Sometimes having anything, even fabric, touch my face can also cause issues. For that reason, I use ultra soft multiclavas to help reduce the friction on my face. In the end, you have to pick the lesser of two evils; do you want your face on fire and in intense pain, or do you want escalated pain from fabric touching your face? Note that there are times when I simply cannot put any fabric against or have anything touching my face without extreme pain. Those are days when the best option is to stay inside, yet again, to avoid unneeded pain and suffering.
Feeling like my face is on fire is one of my worst Trigeminal Neuralgia symptoms. Not only does it not feel good, it also makes you stop any activity and head to bed for an unknown amount of time. Trying to function when you are on fire is practically impossible. One time while I was on fire, we took the temperature of my right cheek with a digital thermometer; 105 degrees Fahrenheit. 105 DEGREES! It’s now become a game to see if I can beat my highest temperature. I hope I’ll lose.
