Friday, December 21, 2012

Let's Begin at the Beginning

This blog is probably past due, but I finally feel ready to share what I have learned and what I am learning on my journey with Postural Orthostatic Tachycardia Syndrome (POTS).  “Hi, my name is Amy, and I have a type of Dysautonomia.”  (That is your cue out there in the interwebs to collectively say, “Hi, Amy.”)

So, the beginning...  This past April a few weeks after a nasty sinus infection/viral attack of some sort, I became suddenly weak.  I thought I was going to pass out, I was insatiably overheated and my heart felt like it was going to pound right out of my chest.  When I say suddenly, I mean, in a New-York-minute kind of instant.  A friend drove me home from work, and as I laid on my couch scared, sick and helpless, I did what any independent, 29-year-old woman would do… called my mom.  Lucky for me, my parents only live an hour away, so my mom was there in a flash and already had a doctor’s appointment for me for the next day.

Needless to say the symptoms increased and became worse and after about three months of various doctor’s appointments and even more tests, the answer to my questions was POTS.

I would like to note here that I was extremely lucky and this was a quick diagnosis compared to other stories I have heard involving years and many mis-diagnoses.  I live in Cleveland, so I knew if I had to see a specialist, I wanted to go straight to the Cleveland Clinic.  While it took some time to get into the specialists I needed and to complete all the ordered tests, they were basically chasing the right thing from the start.  I originally saw an endocrinologist because my family doctor thought perhaps it was hyperthyroidism.  That very day, the endocrinologist sent me down for a Cardio consult as well since my heart rate was so fast.  I saw a cardiologist who pretty much immediately determined, if my thyroid tests were negative that I should see his colleague because it sounded like Dysautonomia.  “Dysauto-what?” I thought.  I couldn’t even remember the word to Google it when I got home.  Turns out though, that last minute Cardio consult sent me down the right path of my diagnosis, so I am extremely grateful for those doctors on my first visit to the Cleveland Clinic.

Now has been 8 months since that initial onset… I have been riding quite a roller coaster and there have been a lot of bumps and a lot of bad days.  I missed a ton of work, took medical leave and spent a lot of time wishing it was just a bad dream, but I also remained determined.  Things are certainly not perfect and I struggle every day to push through, but I have come a long way.  The upcoming posts will cover various POTS-y topics from a patient’s perspective.  Keep in mind, I don’t have any medical training and you should certainly consult your doctor with regard to any treatment.  I just hope that what I have learned and what works for me, may help others out there who find themselves in the same boat.