turtlefairy5 Posted February 23, 2014 Report Share Posted February 23, 2014 Hey everyone,I joined this forum years ago, but have been absent for a long while.I was diagnosed with POTS by a cardiologist back in 2008, based on my response to "orthostatics." A nurse measured the differences in my bp/pulse upon laying, sitting and standing. I was prescribed Metropolol Succinate ER, 25 mg daily. Eventually, my life improved after the anxiety I had developed over my symptoms abated with the help of the medication. I got a part time job to supplement my disability, and was living independently.Last year, I got the bright idea to stop my medication because I was frustrated with the fatigue it caused. I did fine for a while, and thought that POTS was behind me.Fall came along, and I caught a virus. I pushed through the virus, though I knew I was weak and worn out. I went to visit my mother for the holidays.I ended up in the emergency room, my heart rate sky high. Over the next couple months, I was in the emergency room 4 more times, and caught another cold. Each visit, I was given fluids, my heart rate improved, and I was discharged.At one visit, my potassium level was low. At another, my thyroid was off. When my thyroid was tested again, it was fine, but my DHEA was off.I'm getting to the tilt table test, I promise!To make a long story short, my symptoms are back again - tachycardia, susceptibility to infection, wacky levels of random vitamins/minerals/hormones/etc., gastric distress/reflux./fatigue, anxiety, etc.The doctor at my last ER visit referred me to a cardiologist that he said researched POTS. I met with that doctor, and he set up a tilt table test.I did the tilt table test this past Friday.When the table lifted, my heart rate went up. I know because I felt hot, sweaty, lightheaded, sick. Also, one of the nurse's eyes bugged out and she started telling me to breathe. Another nurse told me to bare down as a countermeasure. Soon, my heart rate decreased, but stayed over 100. (I could see the monitor reflected in the glass of a picture frame.)After a while, the nurse grabbed an IV bag, which I realized was the medication they had mentioned might induce symptoms. I was really terrified of this. My heart rate shot up over 170, and the nurses all intently tried to get me to calm down, which I did once they explained the medication was a tiny amount, and would only mimic me walking around, or maybe going up stairs. (Information is so helpful sometimes!)I was still sort of anxious, and though they had told me to try and be quiet, I conversed with the nurses. They pointed out how thin I was, and I told them about my reflux issues, and how I had lost a lot of weight recently, and was having a endoscopy/colonoscopy soon. It was a calm, pleasant conversation, and I wasn't particularly nervous, though I could feel the medication, and my standing position, and talking, was affecting my heart rate. One nurse kept bugging her eyes out, shaking her head at the monitor, and the other kept asking me to perform countermaneuvers. The nurse administering the test said, "Something is definitely wrong....." when I asked her how I had done.Imagine my surprise, then, when a different nurse who came into my room after the procedure announced that the test was negative.Negative?She said that my heart rate definitely went up, but that it didn't "bottom out," and that "that is what we look for."Really? I thought that POTS is defined by an increase of 30 bpm or more upon standing. And I definitely had that happen. Anxiety aside, after I had calmed down, it happened again, and continued to happen, under the influence of the drug meant to mimic minimal exhertion. The doctor told me to continue taking my beta blocker, offered some exercises for me to do, and prescribed Cymbalta. I am so confused as to why my test was negative, if my heart rate went up so high upon elevation, and in response to the influence of the drug.I'm concerned that because I had an anxiety response to the administration of the medicine, that all my reactions during the test are being chalked up to anxiety, including my response to being elevated, and to the influence (not just administration) of the drug.Also, I'm confused because the aftercare nurse indicated that a responsive drop of the heartrate was needed to receive a positive result. I've never heard that associated with POTS.Does anyone here have any information, insight or suggestions?Thanks! Quote Link to comment Share on other sites More sharing options...
Krissy21 Posted February 23, 2014 Report Share Posted February 23, 2014 I'm just guessing here, but maybe she meant that it was negative for neurocardiogenic/vasovagal syncope since your heart rate didn't drop and you didn't pass out? When I had my tilit table test I was diagnosed with both POTS and NCS. My heart rate went from 72 laying down to 116 upright and they said I was positive for POTS because it increased more than 30 bpm. Then about 10 min into the test, my heart rate dropped from 115 to 48 instantly. At the same time, my blood pressure also dropped from 102/68 to 84/48. I was just barely conscious at this point so they lowered the table and ended the test. Because of the drop in BP and HR, I was also positive for NCS. I was taking propranolol when I had the test done and they did not use the medication to induce symptoms. My doctors told me that the only criteria needed for a POTS diagnosis is an increase of 30 bpm when standing so I would clarify your results with the doctor that ordered the test. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 23, 2014 Report Share Posted February 23, 2014 My first was negative .error in the leads/tech performing test. They repeated 2 weeks later. Laying 70s80s straight upright 160 within 3/4 min, laid me down 60 within 1min. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 23, 2014 Report Share Posted February 23, 2014 I wasn't on any meds Quote Link to comment Share on other sites More sharing options...
turtlefairy5 Posted February 23, 2014 Author Report Share Posted February 23, 2014 Thank you so much for that information! That makes a lot of sense, and helps a lot. And thank you for encouraging me to get my doctor to clarify things! Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 23, 2014 Report Share Posted February 23, 2014 I had a neurologist say that my first test was negative with a similar response. It boiled down to that he did not know how to interpret the test. Quote Link to comment Share on other sites More sharing options...
turtlefairy5 Posted February 23, 2014 Author Report Share Posted February 23, 2014 Thank you! Hopefully, this will get straightened out in a way that I can feel confidant in the doctor. It was a nurse who said it was negative, and she may not have realized they were looking for POTS, but for me to faint or something. In any case, I can always take the results/readings of the test to another doctor for a second opinion, because this one is 5 hours away anyway!I have a feeling I'm freaking out about what the nurse and the physician's assistant said, and hopefully the cardiologist will clarify. I just don't see how there could be any doubt about POTS. Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 23, 2014 Report Share Posted February 23, 2014 I hope the doctor works out for you. Sorry it came back the way it did. Quote Link to comment Share on other sites More sharing options...
Becia Posted February 23, 2014 Report Share Posted February 23, 2014 I failed my first test within 30 seconds. 70's and 80's to 160 within seconds of upright, they threw me back down and said it was POTS. Quote Link to comment Share on other sites More sharing options...
turtlefairy5 Posted February 23, 2014 Author Report Share Posted February 23, 2014 That's exactly what happened to me except they kept me upright and told me to breathe and bare down like trying to have a bowel movement. Quote Link to comment Share on other sites More sharing options...
Becia Posted February 23, 2014 Report Share Posted February 23, 2014 Yeah, I didn't pass out, but I was very close to it, and when the nurse said she couldn't hear a bp, the doc ended it. I was trying my hardest to breath through it and keep going, but he ended it.And the baring down part, I always laugh, because I stay symptomatic 99.4 percent of the time... I refuse to walk aroundthe world looking like I have to poo the entire time. We can put a man on the moon, but that was the best advice my docs could give me?! Quote Link to comment Share on other sites More sharing options...
Becia Posted February 23, 2014 Report Share Posted February 23, 2014 I'm scheduled to have another ttt next month, so I'm very curious how that one will go since the past months I've gone down so much. Also, different clinic doing it, so it should be interesting to see their procedures in regards to keeping me upright. Quote Link to comment Share on other sites More sharing options...
Sleepbree Posted February 24, 2014 Report Share Posted February 24, 2014 It seems like these tests vary so much. I just got a new cardiologist and he seems to think I may not have POTS based on my first TTT so now I have another one scheduled for this Thursday. I feel so nervous that I won't "perform" that day. I have good and bad days and I know something is definitely wrong. The main differences between this test and the last one are that only nurses attended my last test, and with this one the cardiologist will be right there, and this table is electronic whereas the last was a hand-crank table. Also, I was not given any meds to induce it to happen on the last test, so we shall see if they do that this time. The last test my hr went up over 30bpm, and then leveled out until around the middle of the test where I went back up steadily until I felt like I was going to pass out, I think up to 120ish iirc. There was never any syncope, however. Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 24, 2014 Report Share Posted February 24, 2014 My results would vary from week to week to. I would be barely diagnosable one time out of the park another. Heck, it varies from one part of the day to another. Quote Link to comment Share on other sites More sharing options...
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