Wednesday, March 21, 2012

Health Condition

Again, I have not posted in so long.  I have been ill.  From the last post, until now, things have not been a picnic but rather a small, slow nightmare of learning what happens when people are unemployed and uninsured and have a health condition.

For the past several years, my doctor has been treating me for TMJ.  I would get extreme pain in my ear and jaw particularly during times of tremendous stress.  In October around the time of the last post that I made, I was convinced I needed an extraction of my back molars.  I figured they had cracked from all the clenching that I did with my jaw.  I was in tremendous pain.  Ultimately the pain faded a bit.  I had no health insurance and no income, so having teeth pulled was last on my list.  I figured I would baby myself along and deal with it.

In November I was standing in Blockbuster when it felt like someone hooked up jumper cables to my teeth on my right side, upper teeth and just cranked it up.  I actually felt giant jolts.  After an hour or so, it stopped.  A few days later, it happened again.  After an hour it stopped again.  This repeated a few more times until around the 10th when the jolts were followed by the feeling of someone hitting my face with a metal bat.  This lasted 5 hours.  5 hours of the worst pain in my life.  Worse than childbirth..... way worse.

On the 16th of November, it came again.  Worse.  6 hours of pain had me a screaming, crying mess.  I told my mom that she had to take me to the ER or I was likely to hurt myself to end the pain.  Crying actually hurt my face.  Tears made me feel like razor blades were slicing my face open.  The cold air outside hurt even more.  I had never felt anything like this in in my life.

I got to the ER and was admitted immediately -- no waiting in the waiting room for a room to open up.  My blood pressure was 185/79.  I actually almost passed out while they were taking my vitals.  I waited for 2 hours to see a doctor (when pain is not visible, you are last in line to be seen).  The ER doctor and a on call neurologist broke the news to me:  I was suffering from a chronic pain condition called Trigeminal Neurolgia.

Trigeminal Neurolgia, hereafter TN,  is a condition in which the largest nerve in your face misfires and sends pain signals to the nerve even from just the slightest touch.  This condition is the known in the medical community as the most painful condition known to medical science.  Those that suffer from it have coined it the "suicide disease" because many who suffer from TN actually take their life.  There is no known cure.  Actually, to make things better, doctors and experts do not know why it happens.  I was told I needed an MRI sooner rather than later to rule out a tumor or MS.  With no health insurance, I chose later.

The first line of treatment is anticonvulsant medications that you would treat epilepsy with.  Unfortunately, these medications have awful side effects and take a long time to build in your system.  My search began.  My primary doctor was not skilled in this area and recommended a trip to a neurologist.  Something I could scarse afford.  After much research I found that OHSU had an expert in the field on their  payroll.... AND a financial assistance program.  I applied and was accepted for financial assistance.

In late January I saw my neuro... who confirmed the diagnosis and referred me to an MRI.  He also made it clear I could not take the bar exam as scheduled in February.  It would be a few more months, by his calculation, before we had this condition under control. I was devastated, but determined to be treated.

The MRI came back clear of tumors and MS.  For that I am thankful.  But the pain was tremendous for a long time.   I am happy to say that the pain is for the most part controlled now and the side effects few.

This is a scary condition to have.  One that usually hits those in their 70s and 80s.  But I am glad that there are places like OHSU that give assistance to people like me, who are caught in the system.

1 comment:

  1. wow sorry to hear about this! never heard of this condition before.hope the docs can find a way to relieve your pain/treat you!