Jennifer Clough, TN Patient

Her Personal Story

Description of Pain, Emotions . . .

While brushing my teeth one morning, a bolt of lightning exploded in my face - I screamed and threw my electric toothbrush through a window - the pain was profoundly piercing and pulsating and didn't stop for what seemed like days, when in fact it was probably mere seconds.

I was terrified that the pain would somehow return.  I stood and wept - all alone - motionless.  My sobbing brought more throbs of pain - out of nowhere.  Every movement brought a new phase of disorder to the right side of my face.  I clutched my mouth wanting to soften the coming blows.  From everyone's view - it would appear that I had a toothache.

Road to Proper Diagnosis . . .

Like the Beatles' tune - it was "a long and winding road" - and I was driving alone!  My dentist suspected endodontic treatment was in order - so off I went for an unknown specialist for three root canals in the same number of days!  No fun - and still the pain persisted.  The Vicodin was helping me not think about it - but the prescriptions lapsed and the pain didn't....and no more meds for me - they were too addictive and this really isn't a dental problem anymore!  But then, what is it????  Any mouth movement was brutal - which limited the basics such as talking, chewing, coughing, sneezing - even the slightest touch on the cheek was unbearable.  I would end up in the fetal position just sobbing and holding my breath until the pain stopped spiking.

And then came my sweet friend, Barb, who could tell just by looking at me that my pain was very real .... Hmmm, she thought, her father in law had similar pain --- off and on for years and years - and she remembered what this mystery pain was called - Trigeminal Neuralgia.

BINGO - off to the internet I go and before I could dry the tears of combined joy and pain - I have VOLUMES OF PAPER describing my painful episodes to the proverbial T.  And what made this finding even better was the credibility I was able to achieve that yes, my pain is painfully real (all puns intended), and no, I wasn't going crazy imagining this situation.

OK everybody - now fix it!  Make me better.  No such luck....I phoned my physician's office sobbing in pain pleading for someone to see me and see me now. "I can't live this way - somebody has to do someone or I don't know what I'll do!"  That edge of panic got me into the system - so off I go to a total stranger/an on-call doc (my physician wasn't working this particular day) with my reams of paperwork and bloodshot eyes from my crying bouts.  I must have looked horrible because I'd never received such immediate treatment in all of the years I had been using this particular HMO.  And the new guy was patient and let me blabber on and on and kept repeating - just give me something to make this pain stop!!!!  And he did - something that absorbed the pain (Tegretol) - and my brain as well.  I instantly became useless to anyone.  I'd be sitting at my desk at work, the phone would ring and I'd say "hello" without picking up the phone.  It took many phone calls and much begging to have people adjust the pills I'd been given - and I even started playing with the tablets myself - making them smaller or taking more than I was prescribed when the pain picked up.

Impact on Family and Friends . . .

It was hard for people to really understand what I was experiencing.  The worst thing of all was one day when I was holding my 9 month old granddaughter, Olivia.  She innocently touched my cheek - and of course, the electronic shock pain kicked in so strongly and abruptly that I almost dropped this most precious person in my life. Oh - Gramma needs much help and needs it now!!!!!  When I was able to state these stories to those attempting care, it gave a life to my crisis.  I was eventually turned over to a neurologist who has attributed this horror as an extension to my multiple sclerosis diagnosis - a pitiful tag I've been carrying around with me for the past 20 years.  I say pitiful since it's not a disease that's curable - nor is it one that has any sensible pattern to it.  You just wake up one morning unable to walk or see - and why, because you have MS! And now this MS has brought me this most hideous of maladies, trigeminal neuralgia.

I photocopied everything I got on this condition and sent it to everyone I knew so they would know what I was living with - or at least trying to live with.  As they read what I offered, they all agreed it was the "yuckiest" thing they'd heard of and "How can you stand it?"  My son wanted to know if the condition was hereditary.....good question, and I told him I hoped not.  And then I bought the book, The World's Worst Pain. The title tells it all.....I wanted to know what I was in for and also wanted others to know about my physical/emotional struggle.

These past 2 painfully long years have been a living nightmare - in every category.  I received the worst personnel evaluation in my working career of 32 years - I was asked if I'd been tested for dyslexia and do I have any idea how many mistakes I've been making?  And is there something wrong with me????  The medication has prompted continual visits to the doctor's labs for blood draws to see if the many meds I'm taking every day are trashing my blood system.  I live in constant fear of having to repeat the horror of two years ago - and I'd stopped using the electric toothbrush because of the horrid memory of what happened while I was using it.  I have many letters from my physician and neurologist in my personnel file trying to explain the down period in my work life.  I have special instructions in my various dental files about how to give dental care with a TN patient - it requires special Novocain injections.  My daily medication keeps me from enjoying any alcohol . . . even grapefruit juice!

The local support group that I found online is fabulous.  What a treat to be able to sit in a group of total strangers and know that I'm not alone.  We all have some type of debilitating facial pain and we all know what each is experiencing.  That's been the biggest gift to me in this whole mess.  Patient, kind and lovely people who feel my pain. Literally.