My Health #1 - Tuesday, June 7

As a young adult, while working at Sears part-time, I had to quit because I couldn’t stand on concrete for as little as 4 hours without going home in tears. My husband was an over-the-road truck driver, so he made enough money to support us. I took about a year off from working, during which time I taught piano lessons to just a few students, and rode along with my husband on occasion.   In July of 2004, I went back to work at a desk job for Home and Lawn Repair, Inc. and although that was very hard work in a repair shop, I was still able to work full time.  In December of 2004, my husband and I learned that we were expecting our first child!  I can’t begin to describe the feelings that washed over me; excitement, fear, joy, horror, inadequacy, love, terror, elation.  It is, I found out, possible to experience all of those emotions in unison.
About five years ago, after our son was born prematurely and with many complications, I was diagnosed with Fibromyalgia, but I'm almost certain I have had it since I was a very young teenager.  The trauma surrounding his birth was just the straw that broke the camel’s back.  
For those that may not know, Fibromyalgia is widespread unexplained pain throughout the body with no known cause.  It seems to originate in the central nervous system.  It typically has symptoms like depression, headaches, often severe (migraine), difficulty concentrating (often called fibro fog), stiffness, trouble sleeping, irritable bowel syndrome, and generalized pain and severe fatigue.
I theorize that I was prone to this condition at a young age for two reasons.  One, it has been found to run in families, and my aunt was diagnosed many years ago with the same symptoms.  Two, there really isn't any reason for a healthy kid not to be able to run a mile without feeling like they are dying.  I was not heavy then and was a very active child.  Also, in high school band, there were some exercises that I simply could not do.  There was one in particular that I remember:  I had to lie flat on my back and raise my feet 6 inches off the ground and hold it until the director said to lower them.  I simply could not do it.  I also couldn't run to the end of the parking lot and hug the big oak tree and then run back, or run laps.  I just couldn’t overexert myself. 
By the time I finally went to the rheumatologist and was diagnosed, I was taking what I would consider to be a crazy amount of medicine for a woman in her twenties.  I was prescribed something for depression, contraception, pain, sleeplessness, IBS, focus, fatigue, high blood pressure, cholesterol and on and on.  I decided about 6 months ago to stop taking everything except the blood pressure, depression and contraceptive medication.  I felt better and better.  Eventually I was even able to cease taking the blood pressure medication because my b.p. was normalizing for the first time since I’d had my son.  I wasn’t falling asleep at work anymore.  But, the one thing that never went away was the headaches.  These headaches mostly felt like sinus headaches, with a feeling of pressure behind my eyes.  They made my eyes heavy and sometimes the only way to get relief is to lie down, or to take a hot shower.  I was dealing with them, and just considered them to be a part of my daily routine, and part of the Fibromyalgia.
Then over a year ago, I started having problems with left side of my jaw clattering when I was trying to go to sleep.  I tried explaining it to my doctors, but the message seemed to get lost in translation.  It was not noticeable to anyone but me until more recently, when my husband started noticing that my jaw was tightly clenched when I finally went to sleep, and I was making a hissing sound when I breathed.  Then the clattering spread into my left leg, which would kick out straight and hold tight for a few seconds before coming to rest.  This went on for some time and then it, too became very noticeable.  My husband described it as something akin to sleeping with a hissing donkey.
When this convulsing spread into my abdomen, I decided it was time to go see the doctor.  Trying to sleep next to a hissing donkey that behaves like a folding chair on the blink would make any spouse uncomfortable.  Fortunately enough, I haven’t had any black outs with these ‘spells.’  The clonazepam does help the spells.  My husband says that they are not noticeable anymore.  I still have them, but they aren't as severe or scary.
I went to see my family physician about this issue, and the first thing that he was concerned with since the spread of the convulsions was that I may be having a type of seizure called simple partial.  This concern was also expressed by the neurologist.  He ordered an EEG and an MRI, both of which came back normal, and he noted that the shape of a part of my brain told him that I was very smart.  It is nice to be given that diagnosis at least.
The neurologist decided to up my dosage of clonazepam to see if it would help the ‘spells.’ The neurologist started asking about my trouble with headaches.  I described them as a dull ache that has prolonged over a period of nearly 14 years.  I don’t have a headache ALL day, but I do have one for at least a period of time EVERY day.  Usually with exertion, stress, or tiredness.   At this point he was really interested in the headaches and my description of the type of pain I was having.  He said that he suspected I have a condition called Pseudo tumor Cerebri, or ‘false brain tumor’.  PTC is a condition where the body either produces too much cerebral spinal fluid (CSF), or doesn’t reabsorb it correctly. There is no known cause.  There are four main risk factors, or the four “F's”:  Female, Fertile, under Forty and Fat.  He said that the only sure way to diagnose this condition was with a lumbar puncture, or spinal tap.  We scheduled the test for May 31st, 2011.  My friend drove me to the Dr.’s office. 
I lay down on his exam table. He raised my shirt and lowered my sweats just enough to expose the area he needed to access.  He cleaned the area with a cold scratchy brush pre-loaded with castile soap.  He then coated the area with Betadine® microbicide.  He then draped sterile towels around the area to keep it clean and clear of debris.  He gave me two shots of a numbing agent just under the skin where he would be working.
At this point it was time to insert the .22 (extremely thin)gauge needle with a stylet in my spine between the L4 and L5 bones of my spine, trying to hit a 2mm area wherefrom he would extract and test my spinal fluid.  He was unsuccessful on two tries.  I must say at this point that the word insertion makes it sound like the needle slips into place easily.  This is not so.  The best way I can describe it is to ask you to imagine the way a knife feels in your hand to slide the point of a blade into a raw roast all the way to the hilt, but in your back and add terrible pain.  This happened three times before the doctor was able to hit the right place.  The doctor said later that it was a very difficult tap. In retrospect, I’m glad he didn’t give up.  I don’t think I would have wanted to try that again after an unsuccessful attempt.  As soon as the needle is in place, the stylet is removed and spinal fluid (hopefully clear) will drip out.  Then a device called a manometer is attached to the spinal needle to measure the pressure of the fluid coming out of the spine.  It measures pressure in cm.  The normal opening pressure for an adult patient is between 8 and 20 cm.  My measurement was at 25 cm.  This confirmed the diagnosis of Pseudo tumor Cerebri.  After the procedure was finished and the doctor removed the needle (which burned terribly), he sat me down and let me know what I need to do to cope with this condition.  I am going on a medication called Topamax to help regulate the pressure in my spinal column and brain.  This medication ‘messes’ with birth control pills, and can also cause birth defects if I were to get pregnant while taking them.  The doctor suggested that I have my tubes tied to prevent any chance of pregnancy.  He also wants me to quit smoking and lose between 50 and 100 pounds.  It would seem my life is about to take a very serious turn.
After the procedure, I got a ‘spinal headache’.  This is a headache that commonly occurs after a spinal tap, when the pressure in your spine goes too low.  It is like no other headache.  The only way to get any relief at all is to lie flat.  So, expecting to do so for 24 to 48 hours, I made a nest on the couch decked out with laptop, coffee table, water, pain pills, and some pillows and a blankie.  Tuesday went by.  Wednesday.  Thursday things were still getting worse rather than better.  I went back to the doctor Thursday and he took me off the Topamax, citing it as the exacerbation of my spinal headache, but also noting that I was also suffering a severe migraine headache. He prescribed me Imitrex for my migraine and sent me home and took me off work on Friday. 
Thursday went by. Then Friday. No improvement. At 4 a.m. Friday I was awakened by sudden and severe nausea.  I ran to the bathroom and was sick.  We decided I should go to the e.r. and see what was up.  I didn’t take any medicine.  I checked in to the Mountain Home e.r. and they put in an i.v.  and gave me a dose of Demerol, Benadryl, Tordol, a muscle relaxer, and an anti-nausea medication.  I slept well for a couple of hours, while they dropped a bag of saline into my system.  They sent me home with a prescription for Percocet and Soma for pain and muscle relaxation.  Sunday passed. Then Monday I went to my regular doctor to fill him in on what has been going on.  He discovered that along with everything else, I have a sinus infection for which he prescribed me some antibiotics.  He also prescribed me some Phenergan.  I went to the Neurologist this morning, feeling a little better.  He told me to resume the Topamax when I felt that the spinal headache was gone completely.  I think it is.  There is so much to do now.  And the only two things I know for sure are that I have a future that holds pain and headaches and no chance of a little brother or sister for my son. 
On the other hand, I am so very lucky to have my child, and this most recent ordeal only makes that all the more true. I am also very lucky to have the friends and family that I do.  Everyone has shown such concern and offered so many prayers and help to keep our family going with Mom stuck on the couch.
I love you all!