Trigeminal Neuralgia Is a Real Pain in My Face

In my wildest dreams, I never thought I'd wake up with excruciating pain on one side of my face.

It was a pain like no other. A pain that felt like I was being struck by lightning, but I obviously wasn’t, and it was extremely scary.

I had no idea what was happening to me, or why. That is, until my doctor suggested it might be trigeminal neuralgia. To be honest, I had no clue what that was, because I had never heard of it. And from what I've gathered since this diagnosis, not a lot of people have heard of it unless they are living with it themselves.

One Diagnosis Leads to Another: MS

With this happening to me my doctor ordered tests such as MRI’s, blood work, and a lumbar puncture to see if this was caused by something more. Well, there it was: a dark cloud hanging above me that happened to be multiple sclerosis (MS).

Believe it or not, trigeminal neuralgia is more common in people with MS than in the general population. To my surprise, it’s also more common in women than men. Lucky me, right? In fact, it’s actually described as “the most excruciating pain known to mankind.”

My mind was blown away by this, because I could totally believe that. I lived it!

Pain Like Being Electrocuted or Stabbed

Physically, the facial pain was a nightmare I couldn’t wake up from.

In my opinion, the word “pain” is an understatement, because this was like being electrocuted or stabbed over and over again. I was unable to eat solid food, so I was forced to drink a lot of Ensure. It's not the best tasting, but at least I got nutrients.

I was unable to brush my teeth without wanting to scream, which would have been a horrible idea considering it would have triggered even more zaps, so I switched from my electric toothbrush to an ordinary one just so I had better control of the pressure.

I was unable to wear my usual hoodies, because anything touching or brushing against my face caused so much pain. Thankfully some friends had given me button-up shirts, which made getting dressed a little less painful.

It was so hard to wash my hair because of the water running down the left side of my face, so I ended up shaving off half of my hair to make this task a little easier. I was then able to just swoop my hair all to the other side if I needed to wash or style it.

This ended up being a hairstyle that I fell in love with, so I still have the look even though I am currently TN-free. Who knew shaving my hair would give me so much confidence? I sure didn't.

Getting back to the pain, don't even get me started on talking, because wow! I spent about a week barely speaking because it caused such intense, stabbing pain. My husband probably enjoyed the silence, but not being able to speak much made it hard for me to vocalize what was happening so that he would understand.

Physical and Emotional Pain

Trigeminal neuralgia drained me emotionally and mentally. This excruciating pain brought out so many tears that I never knew I had, because I am not one to cry often.

Then anxiety and fear took over, because again, I had no idea what was going on other than the medical terms my doctor had told me. I ended up making the mistake of trusting Dr. Google, who told me TN was also known as the suicide disease, because your face explodes in stabbing, unpredictable pain that no one should ever have to bear.

Well, that's scary to find out. So yes, my fear of this awful feeling was off the charts. It was hard to find ways to calm myself down from the emotional roller-coaster, but I eventually found peace in meditation. Meditating is something I’ve done in the past for various reasons, but these attacks pushed me to make it a priority in my everyday life, because it helped to ground and center me.

Help — and Determination

Though I found ways to cope with TN on my own in a nontraditional way, I have to admit that getting through this horrible nightmare was a team effort, because I could’ve never dealt with this alone.

My doctor gave me two medication options to choose from that could help. I chose gabapentin because it’s the one that I had heard of and knew a little about. It took a few days to notice if it was helping or not, but ultimately, it did help. Two weeks later I was in the clear and able to taper off of the medication.

As scary and nerve-wracking as those few weeks were, I'm weirdly grateful for the trigeminal neuralgia attacks, because they gave me clarity for an even bigger underlying condition, MS.

With secondary trigeminal neuralgia, I have learned one major lesson: I will continue to live my life, because I refuse to wait around for the next attack. Unfortunately, attacks will happen again, but I will be as ready as I can be for when they do.