I have noticed SEVERAL posts on this website regarding rapid and pounding heartbeat. I have also messaged many of you individually or posted notes to your pages in order to try to contact you.
In 2008, I became very ill. Doctors were not able to figure out what was wrong with me, but I frequently experienced rapid heart rate, dizziness, leg pain, back pain, pelvic pain -- the list goes on and on. Six months later, I was diagnosed with a ruptured ovarian cyst, benign kidney tumor, and an arrhythmia (irregular heartbeat). However, because I was a teenager at the time, I was blown off and told repeatedly that the remainder of my issues were due to hormones, panic attacks, anxiety, and my "stressful" lifestyle.
From that time to 2011, I struggled daily. I had difficulty climbing stairs, couldn't play sports or exercise anymore, always felt tired, and had numerous other problems. In February of 2011, I had a minor surgery on my urethra. I was supposed to wake up in an hour, but instead woke up 4 hours later. I was vomiting, tired, dizzy, and unable to understand anything. Doctors were stumped at why the anesthesia and such a minor procedure affected me so greatly. It took me nearly a month to get back to my usual self.
I went to Eastern Kentucky University in August of that same year. I was so excited to transfer schools and live independently. But two months after school began, I came down with a bad sinus infection. I saw an urgent care doctor and was told to take Sudafed and return in a week. Two days later, I was back in the urgent care with a resting heart rate of 132 bpm. The doctor panicked, noticed my right leg was larger than the left, and suspected I had a blood clot. I was immediately sent to the ER. Blood clot was negative, but there was no known cause for my rapid heart rate or large leg.
I discontinued Sudafed, as suggested by the doc, and saw a cardiologist that evening. He had me wear a 24-hour event monitor, which, like the first one I wore in 2008, showed an arrhythmia, but nothing else. Followed were more normal EKGs, ultrasounds, and echos. I decided to just give the appointments a rest and get back to school.
About a week later, I was still sick. The sinus infection had gone, but the rapid heart rate, dizziness, fatigue, and such continued. One night, I got up from my dorm bed to go the bathroom. I took a few steps and then collapsed in the floor. When I stood back up, I thought, "Wow! My heart is pounding." When I sat down on the toilet, I noticed my heart wasn't pounding anymore. Stood back up to walk to the bed, it was pounding again. Then it dawned on me: my heart races when I stand up, it doesn't when I sit down. I got back in bed and pulled out my laptop. I typed into Google: "Heart races when I stand up," and there it was. I knew without a doubt that Postural Orthostatic Tachycardia Syndrome (POTS) was my problem. I stayed up all night reading and crying and in disbelief.
The next morning when my boyfriend woke up, I told him, "Dear, I think I found my answer. I think I know what's wrong with me." We've been dating since I was 14, so he had been around for it all. As soon as I showed him the information, his mouth dropped. He said, "Wow, think that could be anymore like you?" From there, we decided to take action. We went out and bought a heart rate and blood pressure monitor.
The following Monday, we started to record my heart rate and blood pressure during different activities. We did this for three weeks. I had over twelve pages of symptoms, heart rates, blood pressures, etc. I also had my boyfriend track his so we could note the difference between the two of us. When I was walking, my heart rate was usually 140. When he was walking, his was only 90. Up a hill, mine was 165. His was around 100. We did a 30 second jog one of the days. My heart rate was 187. His was 112. Of course, we are different ages, sexes, heights, etc., but still, such a drastic difference is not normal. On the last day, we recorded at the campus gym. We jogged for 2 minutes and 30 seconds on the treadmill. My heart rate was 218. His was 121.
The next day, with absolute certainty I knew what I was doing, I called to make an appointment with a POTS specialist four hours away. I got an appointment in November. After two appointments and multiple tests, I was proven right and given the diagnosis of POTS.
The lack of knowledge and doctors associated with POTS Is astounding. If it weren't for my taking action, I would probably still be clueless today. While my condition has improved some since being diagnosed, life is still about the same for me. In less than a week, I go from my hometown in Ohio all the way to New York to participate in a research study. Hopefully, I will have more answers when I leave than when I arrive. Regardless, I know my health could be much worse, and I do have a correct diagnosis now, so I am grateful.
My main reason for posting this is to try to spread awareness and help others. PLEASE, if you feel that my story or symptoms are similar to yours in any way, don't hesitate to contact me. I am no doctor, and I may be young, but I can help.
Thank you, and best regards,