Sunday, October 6, 2013

Trigeminal Neuralgia...and the first International Awareness Day

First of all, this is the first time my actual real name is being used on the blog.  Rea is Rickki....Rickki is Rea.

Stay with me here:

Trigeminal neuralgia [also prosopalgia or Fothergill's disease] is a disorder in which the largest cranial nerve -responsible for the motor function of chewing and facial sensations- is damaged, often but not exclusively from swollen blood vessels scraping the protective sheath of the nerve.

Because the trigeminal nerve runs from the temple to the jaw and across the cheek in three branches the pain associated with TN can strike almost anywhere in the face leading to frequent misdiagnoses. Some patients experience symptoms for years, often undergoing unnecessary dental work before receiving the proper diagnosis.

Symptoms include sharp, intense pain described as "stabbing electric shocks, burning, pressing, crushing, exploding or shooting pain that becomes intractable" and has been called one of the worst pains known to medicine.
Sometimes attacks are triggered by talking, eating, brushing your teeth, wind, loud noises, touch or high pitched sounds; however, sometimes there is no apparent cause.
Episodes can last anywhere from a few seconds to hours and sometimes occur in clusters of up to a hundred attacks in a day. This disease exists and strikes 1 in 15-20,000 people (hard to pinpoint the exact # as it is so often misdiagnosed).

Because of it's randomness and intensity, it's also known as the "Suicide Disease."

Monday, October 7, 2013 is the first internationally recognized Trigeminal Neuralgia Awareness Day.

Here is an article about how awareness is being raised around the world, as well as a PSA.

OK, so if you have read this far.....

I was diagnosised with Trigeminal Neuralgia in January 2012.  I started having symptoms in November 2011, but went through the rigmarole of being diagnosed with ear infections, sinus infections, the need for a root canal....etc. etc.  My family physician came back from maternity leave in January (I LOVE my doctor) and knowing my history with the back surgeries (one failed, one semi-successful) and everything else, she listened carefully, and said "I've read about this...I think you have...Trigeminal Neuralgia. "  Then wrote the name on a piece of paper that I googled and then carried around in a state of shock for a week.  I told no one that first week (But my DH).  I can still taste the metallic taste of fear when I think about it.  But the pain was too intense for me to just wander about in a stupor.  The blinding pain was causing me to fall, for me to try to hide my head while at work.  To wearing sunglasses at night hoping to cut some of the pain.  I considered buying stock in Ora-gel because I was going through a container a week trying to numb the pain.

Then I went to the neurologist.  I had MRI's, MRA's, looking for brain tumors, signs of stroke...everything.  I started intense anti-seizure medication and pain killers and then slept a lot.  I had to leave my job.  My life and that life of my family was flipped upside down. 

I'd like to say that I've learned to live with it...and in a way I have.  But then a "flare up" comes along and I'm brought to my knees again.  And really that is where I should be...on my knees in prayer to my Lord and Savior.  For He is the only Way out of this.  I've had a really bad time for the past month, and have been hoping for a remission.

It reinforces the timing of the first International Awareness Day.  This is a very rare disease.  I've been blessed to find a few different groups of people on Facebook that I am able to talk with who also has this terrible condition.  It helps to not feel so alone. It's fun that these folks are from the UK, Ireland, Australia, and the States.  But it's also sobering because in the last year, we have lost a few members because of this disease. (Sadly, also by their own hand-reinforcing the "suicide disease")

Please take time today to pray for the people who have TN, the doctors trying to find a cure, or at least a good way to treat it.   Pray for the families of TN patients.  They are lost in the shuffle too.  (MY family is my concern--they have no support and yet have to see me suffer and their life is forever changed too)

If you have it, WEAR TEAL today as it is our COLOR
And thank you for your love and prayers.....

And PLEASE leave me a comment, so I know you were here!

Write up stolen from my cousin's blog


kelly said...

praying for you as always. xo, k

Heather Hennell said...

I was here friend! Will keep praying for you :)

Niki said...

hey - nice write up on TN; pray tell, where ever did you get such a concise overview?
I wore teal and so did Felicia when we went out to lunch.

Christie S said...

Enjoy hearing what's going on there. Glad you're writing again.