My name is Dana and I am 27 years old...
A good portion of my life has been robbed from me by POTS. I have had symptoms of POTS since the age of 16. Before that time I think I was pretty much "normal", but I was always a high strung kid and worried a lot about getting my homework done. To say I was a perfectionist, is a huge understatement.
Doctors say most POTS is triggered by an event, but I'm not sure if that was the case for me. It all started in the summer of 2000 when I was heading into my junior year of high school.
My first symptom of POTS was heat and exercise intolerance. At first I thought that everyone felt faint, had shortness of breath and the inability to stand for long periods of time while outside. I was so young, I figured there was no way something could possibly be wrong with me. Eventually I was diagnosed with EBV during the Fall of 2000, which is the closest thing to a "trigger" I have been able to come up with.
For years, I sucked it up and just dealt with all of the symptoms. I'm a stubborn person and did not want to sound whiny or like I was complaining. Who wants to hang around a sick teenager? After a while I got used to my symptoms and knew exactly what I needed to do to push through it.
At this point, I had no idea my heart was racing while standing. I just knew keeping myself cool was absolutely imperative for me to feel ok.
Years pass by and my symptoms begin to get more severe and much more frequent. Now I would be symptomatic sometimes even when I was cool. I started to notice major issues with exercise too. In college I took a step aerobics class for one of my elective credits. I made sure to wear very cool, loose fitting clothes and brought a TON of water with me. Over the course of the semester, we were expected to add blocks under our step and the teacher started to make comments. "Some of you aren't adding the necessary blocks under the steps at this point of the course". I knew she was talking about me...I explained to the teacher, who had 5 blocks under the step, that if I added a block, they would be calling an ambulance. She did not really know what to say to that, but I assured her I was exceeding my target heart rate every class with no blocks at all. My heart rate would hit 170 basically as soon as we started to exercise. I knew something was wrong with me because clearly every other person in this class (fat or thin) were not having these issues.
I decided it was time to seek help from doctors.
Much to my dismay, they did not care nor have any idea what was wrong with me. Most of them said that I likely needed to stop drinking so many energy drinks, caffeine or I needed to gain weight. Another doctor told me that I should stand up slower if that is when I felt the most sick. An ER doctor accused me of coming in for pain pills because I was clearly a heroin addict that needed her fix. The doctor wanted to check in between my toes for track marks because I "didn't show any signs of track marks on the arm". I wish I was kidding.
After these doctor visits I wanted to punch the wall. I found out rather quickly that doctors were not going to be helpful to me. Rather than actually look at me as a human-being suffering, they just gave out whatever easy excuse was available at the time to get me out the door.
This is when I started to do my own research and came across POTS. Years prior I read about this "condition" and thought I fit the criteria, but saw how poor the prognosis was for those who had it. What's the point of getting the diagnosis if that doesn't help you to get better? Against my better judgment I started to pursue the POTS diagnosis. I started to see a local EP who had some knowledge on POTS.
Sure enough my tilt table test was conclusive and I had POTS. Within the first few minutes of the test I had already met the criteria for POTS. The bad news was that I was on DDAVP, florinef and a saline IV during the tilt table test and it was not doing anything for symptom control. "Well at least you aren't a fainter". He said it half-kidding, but I guess he was right. At least I could cross that one off the list. haha
The EP wanted me to try Adderall (I refused), an SSRI (I refused), muscle relaxers (I refused), midodrine and a beta blocker. So like a guinea pig I started to take these drugs and began developing side effects worse than what I started with. Midodrine was an absolutely nightmare for me and the side effects from the beta blockers were too severe for me to stay on it long term.
I called my EP to get some more ideas and nothing. Every time I call in I am referred to his colleague who has NO clue about POTS. Thanks for nothing, doc. The other doctor I saw at a prominent hospital might as well not exist either. Most of these doctor offices are so poorly run, they do not even have the decency to get back with you.
Since the most common drugs that treat POTS do not help me, I'm here looking for my own answers. I am sick of the way POTS doctors treat us, expecting us to be their pill guinea pigs or test subjects. Let's start doing some real diagnostic testing to see what we all have in common and then start treating these underlying causes. Treating symptoms has not been working and we deserve a whole hell of a lot more than this.