Understanding the storm: what is a TN flare-up?

For those living with Trigeminal Neuralgia, and their loved ones, a 'flare-up' is more than just a bad day – it's a relentless battle. This post sheds light on what a TN flare-up truly entails, from its varied forms to the desperate struggle for relief. We aim to empower sufferers and educate supporters, fostering understanding and resilience in the face of this invisible pain.

The many faces of a flare-up

Trigeminal Neuralgia, or TN, presents itself in a spectrum of agonizing forms and symptoms. Typical type A TN attacks are often described as electrifying, and sporadic.  

Type A ( type1 )Trigeminal neuralgia symptoms:

* Being electrocuted

* Stabbed with an icepick

* Burnt with a branding iron

* Having teeth abstracted with no numbing agent

 

Type B ( type2 )TN, while perhaps not as acutely excruciating, brings a severe, often constant pain that can escalate into a full-blown flare-up.

Type B Trigeminal Neuralgia symptoms:

*Several abscess teeth

*Icepick stuck in my jaw

* "the devil's claw" gripped into face and won't let go  

(we will talk about that further) 

*Brain freeze that doesn't stop

 

For me, a FLARE-UP signifies days, or even weeks, of unyielding, pervasive pain that simply refuses to let go. Our loved ones need to understand a few critical truths during these times:

 

  • No, we don't have any idea how long this will last!
  • No, we don't know of anything we did to bring this flare-up on!
  • No, we are not upset with you or anyone! We are suffering, and we apologize if our short temper might be hurting your feelings when you're simply trying to help.
  • No, even if we're curled up in a fetal position, rocking and crying, it doesn't always mean we need to go to the hospital. However, there might be times when we do, and a little empathetic coaxing can help us get there.

Seeking relief: when to reach out

During the depths of a flare-up, communication can be difficult, but seeking help is vital. If a flare-up has persisted for several days with no sign of relief, we might need you to call our doctor to explore options for medication. For me, when a flare-up has gone on for several days and no sign of relief is coming, I often call my doctor, tell him I'm in a severe flare-up and need a steroid pack to help settle it down. He might have me come in to get a steroid shot to try to speed up the recovery process. That typically helps within a few days to get pain more manageable. And yes, there might be some things that you can bring to me to help; we'll share some of those in another post.

From struggle to survival: my journey and your plan

My personal journey began with Type 1 classic TN, which, after several procedures and surgeries, evolved into Type 2 as well. While Type 1 attacks are undeniably more acutely painful, Type 2 TN, when it flares, can mean 24 hours a day of relentless, unyielding pain. To help others grasp the intensity, I often liken this pain to severe dental problems. Day one might begin as a nagging toothache, but by day three, it feels like several abscessed teeth throbbing and screaming inside my mouth and face. A few days later, those abscesses are still present, compounded by the sensation of an ice pick stabbed into my jaw and inner ear! During these times, my medication dosage increases, and ice packs become constant companions on my face. Any movement can worsen the pain, so I often remain perfectly still for hours to prevent it from flaring up again. These are the days and weeks I struggle most when it led to canceled plans, minimal talking, and accomplishing seemingly nothing. However, I’ve learned to twist the narrative.

Instead of beating myself up for not accomplishing anything during these days, I remind myself that I SURVIVED what Satan thought would take me out! So, if you're experiencing TN flare-ups, be sure to let your loved ones know this. Help them understand that you have no idea how long it will last. Try to have prepared 'flare survival baskets' on hand (we will talk about these later!) for them to sit near you. Then, give yourself permission to be still, use ice or heat—whatever helps you the most—and settle in for some good binge-watching shows. When a flare-up finally subsides, you should feel incredibly proud! You didn't waste time; you SURVIVED this battle with TN!  After reading this, think about things you can include in your own unique 'survival basket.' Have a plan in place for when a flare-up begins. Who do you need to notify? Have ideas ready for when someone asks how they can help. If you cannot talk without pain, try to text to keep in touch with your people.

Create Your Own Website With Webador