Friday, October 4, 2013

teal for TN (warning: not a happy post) (though it is at least clown-free)

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.
All of this cheerfulness has led to TN being nicknamed the suicide disease because, well, okay, that's self-explanatory.

If you've made it this far in the post you're wondering what in the world this has to do with The Nikiverse.
In January of 2012 my beloved BFF was finally diagnosed with TN after having pain so bad that it would incapacitate her and she'd fall down repeatedly at work for several months. Of course first she was treated for sinus infections, ear infections, some other stuff that has all blurred together and checked for seizure disorders and brain tumors.

My soul's twin, the one I have loved since we were toddlers, has the suicide disease.
That isn't the kind of thing that could keep a girl up at night; nope, not at all.

Treatment is a combo of anticonvulsants and pain management. In some patients with  specific blood vessel swelling there is a medical procedure that can be up to 70% successful. There is also current research being done on using healthy nerve cells to repair the damaged ones.
However, in many patients it is a chronic condition that often worsens over time as the nerve degenerates.

I haven't shared Rea's condition until now because it is her story and her decision about who knows.
Today is finally the right time to share the information with all of you because 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.
I'm not gonna ask for contributions or anything like that; I know we all have limited resources and causes that are already dear to our hearts.
I just wanted to do my part to spread the word that this disease exists and strikes 1 in 15-20,000 people (hard to pinpoint the exact # as it is so often misdiagnosed).

On Monday I will wear teal -the designated TN ribbon color- for my Rickki; that and prayer are the only things I can do to help her.
        It would make my heart happy if you would too.
You could also drop by her blog on Monday to let her know that she isn't alone.

[I will share her email privately, if you ask]


Rea said...

Thank you, my twin! My eyes and heart are filled to overflowing with love and gratitude. Thank you for sharing my teal story!

Rea said...

Oh, and I TOTALLY appreciate the lack of clowns and monkeys

Anonymous said...

Niki, I am so sorry to hear about Reaba as I know just how much she means to you.. LIVING WITH sHIRL GIVES ME SOME APPRECIATION OF WHAT SHE IS GOING THROUGH AHD it is a terrible thing to witness. Then you talk with Reeaba next, please tell her that her Uncle D is thinking and praying for her. Love you Dad

Melanie said...

So sorry to hear this, Niki and Rikki -- I will be thinking of you and hoping that a successful treatment is on the horizon. Sending you all best wishes!!