Yesterday was Trigeminal Neuralgia Awareness Day. It is marked by a teal ribbon.
Far Guy has had Trigeminal Neuralgia since Christmas Day 2007. Six miserable years. Right now he is taking only one medication. He weaned himself off of the one that made him feel brain dead.
When you have TN you need a good Neurologist. Far Guy’s opinion and mine differ on Doctors. He thinks that his Neurologist doesn’t always listen to his complaints. I think he listens he just doesn’t have any solutions.
I can tell you that it is no wonder that the suicide rate amongst those with TN is very high.
What we have found what helps, taking your medication on time, NO STRESS (easier said than done for a Type A personality), never leave home without a hat, cap or something hooded. Even a slight breeze can trigger a bad “attack.” I don’t care if it is summer or winter. Ceiling fans are the worst, and places with high ceilings that have air currents….like the grocery store. Sometimes he must eat softer foods, he never eats anything crunchy. Sometimes it hurts for him to talk, I can tell when that happens because he talks funny. Chance is very in tune to him, he could be a TN Service Dog, he doesn’t like the wind either and he knows when it is time to rest. Chance will take him by the hand and lead him to the couch or to bed.
People with TN look normal, they don’t have a visible sign of the rare disorder. Unless of course their hats give them away. They don’t have “headaches” they don’t like to have their faces touched, they don’t like to hug women especially ones with fluffy hair.
In six years we have tried just about everything that we can. Different medications, different Doctors, different oils, acupuncture, chiropractor and nerve injections. We even thought about hypnosis, I used to work with a hypnotist years ago, I attempted to contact him and found out he was deceased. Fat bunch of help he is now.
The pain is misfiring nerves out of control…the pain feels like a cattle prod has touched the side of your face/head. Sometimes many times a day, sometimes a few times a day. Then there is the background pain that never goes away. Far Guy has Atypical Trigeminal Neuralgia, the rare form of the rare disorder.
There are some things we cannot control. Weather systems moving in make for a real miserable day. The wind, no one can control that either.
We will attend a support group in the St Cloud area during the winter if the weather cooperates.
I know there are many of you out there with TN that read the blog. I pray everyday for a cure…I am sure you do too..Shirley and Lisa please know we think of you often:)