Having been diagnosed with trigeminal neuralgia this week I have a lot to process. This month has been extremely difficult. Some of the most trying days of my life.
It all started oct 10.i got a small cavity filled. Because the inflammation was so high in my jaw joint from my arthritis the nerve was on the edge. Docs think it was just a matter of time before it happened and the dental work triggered it. I went to two jaw doctors a neurologist and my dentist. Dentist did a whole workup on me to make sure it wasn't a tooth abscess or root canal needed. Everything with my teeth look great. And my symptoms don't match up with tooth pain either. So all four docs gave the TN diagnosis.
Trigeminal neuralgia is when the nerve on one side of your face is damaged and causes debilitating pain. It is some of the worst pain known to man. It's called suicide disease for a reason. Because when the pain hits you want to die.
It is burning searing stabbing electrical shock like pain. It aches it lasts and lasts. I have swollen glands all the time now from it. I get a low grade fever every time I have an attack. The doctors told me I go into mini shock each time. I shake and get extremely cold and shiver.i get a massive trauma headache for a day or two afterwards. It is truly nightmarish. Neurologist said the attacks are like seizures without the electrical part.
The attacks are debilitating. They are scary.
Treatment plan for me is:
I get steroid/analgesic injections in my jaw joint as needed.
Be on a soft foods diet... chewing and talking are triggers.
I start on neurontin and increase dose weekly until I get to 3600mg a day!! If that doesn't work they will add tegretol.
If that doesn't work next option is a nerve block which can cause numbness and bells palsy! :-(
After that is mri to see if brain surgery will be beneficial.
Here's to hoping the meds work!!!
During one of my pain attacks I wrote a letter to pain. My mom says it's a siloque.
If you don't have much time bail out now cuz its long. But this will open your insight a little to what the attacks are like and I describe one time when I went into shock and the pain went down a lot. The pain going down on its own like that only happened that one time. Keep in mind I wrote this before i got the diagnosis and before I knew there were other options besides just opiates.
("You have a jaw worse than a seventy year old" the jaw dr said. That was 11 years ago. )
For 11+ years I have suffered.
"We are friends" you say.
Well I say come again another day!
But alas you don't like to go away.
You come to visit when it rains.
You come to visit in the mornings, when I fast, eat jerky, chew gum, talk on the phone.
I avoid skittles and starbursts like the plague because of you Pain.
I pay for splint after splint after splint.
My parents pay for jaw therapy.
A few years later I pay for jaw therapy.
A few years after that, I have grown adapt to you Pain.
You get ornerier in the cold months.
When seasons change you wreak havoc on me.
Yes I think my life is hard.
I mention you a lot Pain. To my family, my friends.
Sometimes I swear because of you.
There are times I'd welcome death because of you.
Old people tell me getting old is hard on the body. ... all the pain.
I smile politely; inside I am screaming, "I UNDERSTAND ALREADY AND I AM ONLY 31!!!"
Dear Pain, I have little hope for the future.
I pray medical technology will save me someday.
My kids pray, "help mom's jaw not hurt so bad. "
My husband's fingers are going to get arthritis from all the neck massages.
I did massages for a year but quit.
I cant afford you Pain.
I am in debt because of you.
Doc says, "what's your long term plan for your jaw?"
"I don't have one," I say.
The'hope platter' doesn't have much on it, thank you for pointing that out doc.
Again I feel is pretty rough for me.
Pain and I are FRENEMIES.
I don't like you Pain, yet you stay.
Then one day. ....I am HIT.
I am SLAMMED.
All I did was get a cavity filled.
Tooth pain hurts anyone. I think this is normal-ish maybe.
My recovery time is longer than most because of my TMJ history.
But this HIT hurts worse than any hurt.
Any hurt I have ever felt or imagined.
crying hurts worse
Only the left side?
Pain, you have attacked my bone, my muscles.
What are you attacking now?
It feels different. It makes me BEG for death.
Please God take me home!!
God, why should any person EVER have to feel this pain?
I think of the POWs that were tortured with bamboo. If they endured, surely I can.
For days I try to hide you Pain.
I cover you up.
I bury you.
But I pay for it. I get nauseas, dizzy, constipated. I cant drive anywhere.
I get too itchy.
I can't cover you up like this anymore Pain.
The price is too high.
I cant live my life at all.
I cant deal with the side effects of covering you up.
So I stop.
I stop covering you up completely.
My husband is away.
My parents are away.
My grandparents are away.
I must function for my kids.
Pain, you have returned with a vengeance.
I thought you were really mean when you hurt my bone and my muscles.
But now I know the POWER you have in my trigeminal nerve.
I tense up.
The thoughts of longing for death try to break through.
Death is NOT better!
LIFE is better!!
I want to love my kids!
I want to love my husband!
I want to serve them!
Pain, I turn to prayer for the millionth time.
But this time it's different.
I pray with HOPE.
I pray with FAITH.
I pray with GRATITUDE.
Gratitude for my Savior who FELT THIS TOO.
That's right Pain!
He knows you too!
And He will help me.
I KNOW He will.
It is excruciating.
Burning, searing, aching pain.
"You're going to die. You can't do this," Pain says.
Lord I believe! Help me! My soul cries out to my God.
Pain, you lost.
The miracle happened.
First it was in my heart when I decided you and I will not be"Frenemies" anymore.
You are part of my life.
I accept that.
Hello Pain, FRIEND.
I accept you.
You are confused.
Because my Savior has my back.
That's how I know we can be friends.
That was the first part of the miracle. The part I realized later.
The 2nd part I noticed right away.
The physical miracle.
Pain, I had no medicine.
It wore off too soon and I could not run to it for help for another hour.
My body starts to shiver.
I'm so cold.
My face is burning.
Is this a fever?
I lay shivering, breathing through the hot searing aches.
5 minutes, maybe 10, the 'mini'shock did it's job.
The pain went 70% numb.
My energy is drained, because Pain, I fought you.
With the strength of my Savior I fought you.
Days are passing.
Pain and I are friends now.
Pain comes to visit all the time.
Every few hours Pain has something to say.
I calmly listen.
Sometimes I panic.
But I remember Him.
I feel comfort.
I will make it!
Holding hands with Pain, I will walk the pathway before me.
I choose happy!:)
I am happy because I don't have a"Frenemy" anymore, I have a friend.
A friend who reminds me what really matters in life.
In those painfree moments I frollick.
I embrace the full joy of life.
I say nice.
I feel love.
Pain, when you're here, I stand strong because I know who my FOREVER FRIEND is.
We are friends for now, Pain.
Thank you for what I've learned.
I look forward to more lessons.
But one day Pain, we will part.
We will say goodbye.
I will wave goodbye to you.
I will mouth the words with sincerity "thank you"
I will watch you leave.
I will smile in gratitude for our time together.
I will turn around.
At first I will shield my eyes because of the brightness of the Light.
When my eyes adjust, I will look up into His kindness.
His look of approval.
I will hug Him!
I will finally be able to cry and cry and cry.
I will thank Him for being my Savior, my FOREVER FRIEND.
I love you Jesus Christ. Thank you for understanding me. Thank you for RUNNING TO SUCCOR ME! :')
Thank you for saving me!