Howdy all! My name is Becia (Bek-ah), and I was just diagnosed with POTS exactly one week ago today, and literally since the tilt-table test and the doctor going "Oh *****, get her flat!" then telling me it was definetely POTS, I've felt thrown to the wolves, trying to figure out how to manage, and what I can and cannot do. I've watched the video that was posted here, and cried and laughed through it all. I say laugh, because in the listing of things to avoid, there was one that said "Doctors that dont know anything about POTS". I kept thinking back to my experiences, and just laughed, in which I ended up passing out, and had to rewind it. My POTS experience, I believe, goes back to last year. I ended up in two ERS because of having a racing heart, chest pain, and just general "ugh" feelings. I was diagnosed with a lot of PVCs, told I would live, and that was it. In March, when at the doctor for a checkup, she listened to my heart and said it was way out of whack, and asked if it bothered me. Yes it did, and everything else I still dealt with did too. But I also had a pretty intense job at the time (backroom work of Walmart, I would walk at least 9.5-13 miles a day, and that doesn't include the climbing of ladders and such), and kinda chalked it up to work being too hard. Well, she sent me to a cardiologist, who did all sorts of tests, yep, you've got major pvcs, two medications later she sent me to the EP cardiologist on staff. Had an ablation on 5-30-13, and three weeks later, I was back in his office because I couldn't function and was passing out. Told to increase salt and water (which I was already drinking over 170 ounces a day), and another EKG showed my PVC's were back with a vengance. So, on 7-1-13, another ablation was done. I feel I never recovered from that ablation, because I was still dizzy, weak, lightheaded, exhausted, and raising my hands above my head lead to disaster. I made the decision to quit my job, because I felt I couldn't do it safely, no matter how much I loved it (and I did... crappy company, but MAN, I loved what I did, and was really good at it), if I was on top of a 12 foot ladder (which was common), and passed out, I would hurt myself and others more than do any good. I also revisited with my doctor who told me that desk job would be beneficial, because the more I'm on my feet, the less likely I am to recover from this. RECOVER. Yes, he used the word recover... I'm kinda shocked. He stuck me on Celexa, and I was having horrible side-effects with it (shaking, passing out still), but he kept saying "You'll be fine, you're healthy, nothing to worry about." My shaking was not nothing to worry about, that's a major "Something's wrong here" with that drug. Two days later, the family I live with had to start picking me up off the floor. I passed out coming out of the bathroom, and couldn't move. I had no strength, I was numb almost. They knew I'd been passing out, but never to that extent. It took me a good couple hours to get going, and even then, I was woozy as all get out. They picked me up off the floor again that evening, when I got done with my shower and was heading to bed. That took about four hours to get my strength back. The next day was the day we all went "What they hey?!" and it all broke loose. I'd been passing out, but nothing like the previous day, until that evening. I was unconcious more than concious. Dragging me to the ER while texting my doctor because I couldn't walk, he was still saying "Oh, there's nothing wrong, she just needs to drink more". Dave, one of my friends, was making me drink Gatorade every chance I was awake. They got me on a monitor at the ER, and every time I tried to sit up, I would pass out. Yep, heartrate spiking, I apparently stopped breathing a couple times, but laying down, it would regulate out. The ER kept thinking I had done something to my head, but thankfully, Dave said no to the CT scan, and showed them what the doc had texted him. Did they do that treatment, no, but we decided (when I was awake enough), to see my cardiologist in the morning. I woke up after 2 hours of sleep (my usual, i have insomnia like crazy), and while I felt really crappy, I forced myself to get up, dress, make my bed, and get another glass of water. That was it, after that, I passed out in bed, just laying there. I'd been doing that a lot as well, which is wierd. We finally get to the cardiologist office, and I pass out just trying to get onto the table for an EKG. Suddenly, this got real for this office, and they could tell something was wrong, and Dave wasn't going to leave until we had an answer (Dave and Lori, his wife, are totally awesome people, and you just don't ignore them, I've learned this a LOT lately). Admitted to the hospital, where the next day they did the tilt-table test that led to the cardiologist over that test, cursing and throwing me back down. I cried. I fought passing out, I did pass out. Dave started looking online for information, because its not very confidence building when the doc comes in and says you're only the second patient he's ever seen with this condition. When he comes in and says this is life-altering, and he doesn't know how. When you have a ton of questions, like "Am I going to get back to biking? Am I going to be able to work, and if so, how do I explain this to potential employers so I can get a job?" So yeah. I feel thrown to the wolves with my diagnosis. I'm relaxed by the fact we have a diagnosis, and not a "she's fine, it just takes time," like we've been getting from my usual cardiologist. They started me on Proamatine, as well as the water and salt thing. But I'm still passing out a lot that leaves me with no strength, and in need of assistance to sit up/stand up/get to bed, and I have so many questions I'm afraid to ask, because I'm afraid no one will know the answers. I always knew I was broken. I've dealt with a lot in life. But am I broken so much now that I can't be fixed? I'm unemployed, not allowed to drive because I've nearly crashed my car several times since the second ablation (in fact, Dave took my car key in the hospital after the doc said no driving till I'm cleared, which could be October), and I'm dealing with all of these symptoms that have inpacted me in ways I cannot seem to get my family to understand. I can't even play my drums for long (I'm a drummer for a band at church), and my deaf ministry has been put on hold, because signing wears me out. I can't talk long for a conversation, although most the time I don't make sense, so that's probably a good thing. Where do I go for info? Who can I talk to for advice? How do I need to word my questions, so I can get answers? Help? Sorry for the long post... this is the two hours that I seem to feel halfway human... I'm lucky if I get that in a row...
