A Second Opinion

I had been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), a real fancy word for “life as you knew it has now ended, get ready to feel like crap all the time.”

Over the next few months I had been attempting to handle (albeit, not too well) with the effects of having POTS. I had most of the classic symptoms with the exception of fainting (my saving grace). I basically felt as though I had the flu, a hangover and menopause all at the same time. I hadn’t seen any doctors during these months; I was just trying to “deal” with it. I had good and bad days. Actually, I felt as though they were all bad days, it just depended on the degree of “bad”. I got tired of people asking me, “How are you feeling?” What a quandary…I would always think to myself, should I just fake it and say I’m fine or should I sit them down (for a few hours) and tell them exactly how I was feeling? I usually chose the former. My MIL would ask me this daily, it seemed, and finally I told her, “Look, I feel crappy every day of my life; it’s on a scale of ‘just plain crappy’ to ‘really crappy and beyond’.” She then took to asking, “Are you feeling plain crappy or real crappy today?”

I took some of the dx doctor’s advice. I began to use more salt and drink more water, then I discovered Gatorade and began drinking loads of that. Nothing I did made me feel any better. I did speak with the doctor on the phone once and went in to see him for a follow-up. I expressed to him that life as I had known it was gone. I was no longer the active, take my kids everywhere, do whatever I wanted when I wanted person that I had once been. At this point I wasn’t even able to drive. Partly because I think I was scared that I would have an “episode” like my first experience and partly because I was just scared to leave the sanctuary of my home. I was having some really trying anxiety issues. He just told me that he didn’t know what to tell me, that this shouldn’t be affecting my life in the way I had been explaining and that many people that have this disorder lead normal lives (maybe, I should've asked for their phone numbers to see what they were doing). So basically, I was back at square one. I had this funky disorder that not many doctors even knew about much less knew how to treat. I was (what I thought at the time) at my wits end. Of course, I would later find out that I had a looooong way to go before my wits hit their end.

Then my husband spoke with his good friend at work, whose wife was a doctor in the next county up. She was a GP and didn’t know much about POTS, but did have the name of an electrophysiologist  that was, supposedly an expert on the disorder. I was so excited; to think I might have a fighting chance here, to go to a doctor that might actually be able to treat me. I wasted no time in making an appointment, even though his office was an hour and a half away from home.

The day finally came for my appointment. I might finally get some answers and relief. Excitement didn’t even fully explain what I was feeling even though I wasn’t quite looking forward to the hour and a half drive (I wasn’t sure my bladder could handle it). I made sure to have all my previous medical records with me, the ER paperwork, the reports from the dx doctor, my blood work results, the all-important records of my blood pressure readings over the past several months, etc. I entered his office with the confidence and trust of a child.

First he sent in his “helper” you know, the physician’s assistant that comes in to take all your information (of course this is all the information that you just spent 15 minutes writing down on the plethora of forms they give you) because the doctor is too busy to read your chart himself; he just wants the “cliff notes” version, and then has the nerve to come in and ask you to repeat everything you just told his helper. I could already tell that this visit was not going to go the way I had expected. Anywhoo, the doctor came in, seemed nice enough. He said he had looked over my records (surprise, surprise, what he really meant to say was, “I had a brief conference with my helper and she gave me the short of your issue”) and that he concurred with the dx doctor, that I did in fact have POTS. He asked me what my biggest concern was.  I expressed to him what I had told the previous doctor and that at this particular time my biggest issue was not being able to drive and the serious anxiety (or what seemed to be anxiety). He reiterated the need for more salt and water, however never explained why, this I had to learn on my own via the Internet.

Might I digress here for the moment…none of the doctors I had seen had explained a thing to me about this disorder? They didn’t bother to explain the ANS (autonomic nervous system) and how it functions, how blood pressure and heart rate are a big factor with this disorder, how there are many other symptoms that go along with this, and that everyone is different. I had to learn all of this on my own through research on the Internet. At this point I think I should be able to earn a medical degree, or at the very least be grandfathered in.

Back to the second opinion. After concurring with the dx doctor and telling me to eat more salt and drink more water, he decided to put me on Celexa for the anxiety. Celexa is an SSRI drug (don’t ask me to explain; you, like me can easily look it up on the net). I asked him what I might experience; he explained that I shouldn’t feel any different, just better, like my old self. He didn’t go over any of the side effects; however I guessed I could read about them on the little paper thingy that you get from the pharmacy just as easily (after all, I was getting used to finding things out on my own by now). I went home thinking, this is it; my little magic pill to make things all better. I was hopeful; little did I know what was to come.