First Post...

Ok...Here we go...I wish I could really know where to begin. I guess I will just start with how this blog came to be. I had a MAJOR meltdown yesterday...lol...that is putting it mildly! This was the culmination of about a year and a half of nonstop autonomic SICK. We (my parents and I...*we* come as a team) thought we had it figured out for a while too, which is why this meltdown really happened, because we DON'T have it figured out...more searching...more questions...more doctors...more medications...more tests. 

Some backstory...In 2000 I was up at college and there were some RAGING brush fires that were so bad I was rushed to the ER more times then I could count for "asthma attacks". The ER docs finally told my parents that the option was to either take me home or I would end up on a respirator, so home I went.  I ended up in the ICU in my hometown for 7 days, hospital for 10 days on HIGH dose IV steroids, antibiotics, and meds for anxiety and depression (the docs thought I was crazy because I was having issues with my heart rate/blood pressure/migraines/weight/pupils/dizziness/nausea/throat closing) they thought it was all due to anxiety about school and my boyfriend  LOL! Of course that was WRONG! I was in an autonomic failure that was responding to steroids...everytime they upped the steroids, the symptoms got better, when they lowered the steroids, the symptoms flared up. EVERYTIME! Finally, things in my body calmed down and I was able to get off the steroids and go back to my life at school...dumped the boyfriend (longer story ;-) ) but ended up coming back home when the brush fires kicked back up when I was there!



During my time teaching  I was having some really horrible symptoms that I had to hide from students. I was throwing up after everything I ate. So I would run to the bathroom before class started to vomit, and then make it back to the classroom before the students took their seats.  I had to make sure that I did not eat anything too heavy or mix a carbohydate with a protein or I would faint. I was also having "asthma attacks" whenever there was a brush fire around (which was often and right near the school since it is near the sawgrass).  I was on prednisone often, so I was either swollen, or lowering the prednisone which meant I was crippled in pain.  My hands and feet would literally CURL while I was teaching. I would turn beat red and sweat while I was walking up and down the isles of the classroom making sure the students were doing their work and staying on task.  *These were middle school, special needs students...they HAD to be kept on task...they were the best kids though!!!  It was during one of my breaks that I searched on line and found a Dr. at the University of Miami.  He led me to the Mayo Clinic which is where I was diagnosed with Autonomic Dysfunction (AD).

Being diagnosed with AD at this point means very little.  It is just a group of symptoms that has a name attached.  Doctors are trying to treat the symptoms, but have yet to treat the underlying illness, the nerve.  I thought, at one point, we found a way to treat my nerve. I thought we found the right combination of medications. I really thought we were on the right path to get me OFF PREDNISONE! OH, I never did tell the part where I started taking that horrible drug full time.  Back in 2005, the doctor at UM decided that with the diagnosis of AD he could do nothing, but we did know that my "asthma like" symptoms got better with prednisone (of course) and by coincidence found that my gastric symptoms, and fainting seemed to get better when prednisone was added as well, so that doctor told me to STAY ON prednisone at a low dose all the time...for my "quality of life". I went on 10 mg of prednisone full time in Feb. 2005.  That was quickly raised thanks to an infection...it has been raised and lowered too many times to count since then. 

The addition of "steroid-sparing drugs" was added a year after. This was a very difficult descision for me! It is taking chemo when you don't have cancer, only you get all the nasty side effects anyway.  It was misery for a month, without knowing if it was going to work, or if it was going to kill me. It worked, for a while anyway. I was able to successfully lower my prednisone to a wonderfully healthy 7 mg and stay there for a year before the medication stopped working.  I then had to get off that steroid-sparing drug and try another one...which failed...and another one...fail...and another...fail...and another...fail...Each failure brought my prednisone dose higher and higher...I was up to 80 mg. That is WAY too high for ANYONE! Let alone someone MY size (I am 4'11 and NORMALLY weigh 100 lbs)...not on that dose...I ballooned up to 138 lbs only able to keep it that low because of the gastric problems.

Now here we are...I am on a new steroid-sparing drug, down to 15 mg of prednisone, BUT that is not the reason I am down to 15 mg...the real reason is the NERVE medications we have found thanks to my neurologist and rheumatologist. Mestinon (which replaces a chemical released by the vegus nerve) and Neurontin (which calms the nerves down) are my biggest weapons right now. They open my throat up when it closes....but I am having just as many issues as ever since I lowered to 15 mg of prednisone...and that worries me.  I see a NEW doctor, the HEAD endochronologist at Cleveland Clinic from Cleveland in FL (he comes down here once a month) in a couple of weeks...hopefully he will have some answers.
Thank you to anyone who reads this!!!  I am sure the posts that follow will NOT be this long!!!