Dealing with Trigeminal Neuralgia

A few years ago, I was hosting a client gathering. It was at a fancy restaurant in downtown Vancouver.

I was mid-sentence when it was like lightening hit me. Pure, white blinding pain. The nerve on the left side of my face fired with such excruciating pain that I was vibrating and fighting off tears.

It turns out I had developed a condition called trigeminal neuralgia. It can show up because of MS, but can occur in people without MS. Thankfully it waited until there was 100 current or potential clients in the room to appear.

True to form in my life, trigeminal neuralgia or TN as it is affectionately known, has been called the most painful thing known to mankind. No, I can’t get an irritated eyelash or a scraped knuckle. I get MS and TN. Nice. Well played body.

The early approach was to take the same medication used for epilepsy. It sort of worked, but weakened the reduced strength I already had by 50%.

I continued to be one of the leaders of my company, but with reduced strength and a personality being altered by some heavy duty medication.

I was in my home office one day reaching for something, but I reached a bit too far. I didn’t have the core strength to correct my positioning and tumbled out of my wheelchair. I was by myself, so I tried to get back into my chair off the ground myself. A few dozen times. I wasn’t wearing socks or shoes so my toes became quite raw. Because I use a wheelchair, blood pools in my lower legs. Injuries to my toes bleed a lot. Like a lot a lot.

When Cathy arrived home a couple of hours later, she said, “wow, it’s like a crime scene in here.” I asked her to bring in the kids. They stood there open mouthed. I said, “now, this is what a band-aid is for, not for bruises.”

That was probably not my best parenting moment.

I had an operation called a rhizotomy on my cheek. The doctor damages the nerve with heat or high-intensity radio waves. It dampened the over-active damaged nerve in my face. I was able to stop taking that powerful drug. Trigeminal neuralgia has not been cured in my body, but it is managed.

I have a new lease on life. A return to genuine positivity. Creativity. Optimism.

As I have said before, I share these deeply personal stories on Substack in case they help other people. To not feel so alone as they fight their own battle. To light a spark. To let them know that ridiculous, painful, exasperating things happen to other people. Not just you. Don’t give up.

Stay strong my friend. Some of us get it. We’re here cheering for you even if you can’t see us.