Spring Posted May 2, 2016 Report Share Posted May 2, 2016 Hello and thank you for all of the help you all have provided so far. It has been tremendously helpful to read many of the prior posts as I am just now in the initial stages of diagnosis that is looking like POTS to start. I got a Polar HR monitor and so far my HR readings go from 52-141. But one odd thing is happening I wonder if anyone has any experience with: Sometimes I feel like I am tachy - really, physically tacky, pounding heart, uncomfortable sitting up - but when I look at the HR reading it is not one of the higher readings. I went through a lot of the posts here and one person many years ago wrote about something that sounded similar having to do with "pulse pressure" but no one ever responded to her and she is no longer active in the forum. Has this happened to anyone else? Thank you, Spring Quote Link to comment Share on other sites More sharing options...
statesof Posted May 2, 2016 Report Share Posted May 2, 2016 Not knowing much about the Polar HR monitor, I'm wondering if it is just a wrist one, or if it has the chest strap? As the monitors that only do the wrist are not always accurate, but the chest strap ones are typically more accurate. Remember that your pulse is just how fast your heart is beating not necessarily how hard it is beating, have you taken bp readings during these symptomatic episodes? Our symptoms do not necessarily have to correspond to our vital readings, so you can be more symptomatic overall even when your hr readings seem "okay", or better than other times. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted May 2, 2016 Report Share Posted May 2, 2016 I think statesof explained it very well ! I often feel my heart pounding especially in bed, it wakes me up in the night but it's not always a fast HR Quote Link to comment Share on other sites More sharing options...
Spring Posted May 2, 2016 Author Report Share Posted May 2, 2016 Thank you both for taking the time to respond to my question. My Polar does have a chest strap and it has been fascinating to see just how much my HR has been jumping when I get up - at least 2x resting and sometimes close to 3x. Thinking that maybe even if my HR is only 20 beats above resting but I am not doing anything else to distract myself, even that could be noticeable for me. I will also check my BP during these times too. Guessing the test for "how hard it is beating" just means BP? From a Google search it seems the "Pulse Pressure" that another poster referred to is just a difference between the two BP numbers. Thank you very much. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 2, 2016 Report Share Posted May 2, 2016 A couple of thoughts.... I have POTS but I sometimes experience narrow pulse pressures. The symptoms, for me, feel exactly alike. You would need to take your BP during that time to check your pulse pressure. Also, my POTS neuro told me early on in my diagnosis that a study was done many years ago and that there was not a direct correlation in POTS patients in symptoms vs how tachycardic they were. So, you could, in theory have the same severity of symptoms at 120 bpm as 170 bpm, depending on how your body reacts to the tachy. I can personally say that I feel just as bad in the 120s as I do in the 150s. Quote Link to comment Share on other sites More sharing options...
yogini Posted May 3, 2016 Report Share Posted May 3, 2016 The Polar HR monitor is ECG accurate - meaning it is scientifically very accurate. If you have doubts, you can always count your pulse by hand. Pounding heart isn't always the same as a fast HR -- you can have one without the other. Pulse pressure is just the difference between your systolic and diastolic blood pressure numbers. You can figure out if it is too narrow by taking your BP when you are feeling these symptoms. POTS is a very weird condition - you can sometimes feel sick even when your HR and BP are normal. I would try to identify if there is a pattern that is causing this - is it after you've exercised? after you've eaten? Quote Link to comment Share on other sites More sharing options...
Spring Posted May 3, 2016 Author Report Share Posted May 3, 2016 Yogini and Katybug, Thank you both for taking the time to get back to me! It really does just feel pounding doing almost nothing, rolling over in bed or sitting at my desk. I'm really not freaking about it, it is just nice (sadly) to hear other people say that you feel this way too even if your pulse isn't through the roof. Interesting that a pounding heart isn't always the same as a fast heart - I am learning so much. When you talk about pulse pressure being narrow, roughly what constitutes narrow? I guess if "normal" BP is 120/80 then a normal differential would be 40. Wondering roughly how small that number needs to get to be what you refer to as "narrow"? Realizing all of us are different, just roughly. It is really extremely comforting to be able to talk with someone who understands. Thank you very much. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 3, 2016 Report Share Posted May 3, 2016 (edited) My POTS neuro became concerned when he took my vitals and it was only 16 pts difference sitting and then narrowed to 10 pts upon standing. I don't know what the official number is for too narrow but maybe that gives you some point of reference. Edited May 3, 2016 by Katybug spelling Quote Link to comment Share on other sites More sharing options...
Spring Posted May 3, 2016 Author Report Share Posted May 3, 2016 yes, thank you for sharing Quote Link to comment Share on other sites More sharing options...
Sam1 Posted May 6, 2016 Report Share Posted May 6, 2016 On 5/2/2016 at 3:16 PM, dancer65 said: I think statesof explained it very well ! I often feel my heart pounding especially in bed, it wakes me up in the night but it's not always a fast HR I see the exact issue. Using an Alivecor device I record stuff all the time to catch patterns. It's extremely difficult to read ECGs without training, but I have noticed that when the 'thumping' occurs, the R wave from the QRS complex normally goes further down than during the QRS of a normal beat, and the Q wave does not necessarily go as high (even when tachy kicks in). Attaching some images of personal device reports I just downloaded. The first is a normal recording, the second is one where the heavy heart beat/thumping is occurring. So you are definitely not alone with this issue. Quote Link to comment Share on other sites More sharing options...
yogini Posted May 7, 2016 Report Share Posted May 7, 2016 "Normal" BP is 90/60 to 120/80. So if your BP is 90/60, your pulse pressure would be 30. If you have a BP of 120/110 that would probably be unusual pulse pressure. Remember that BP is always changing and the home BP monitors aren't always accurate. I wouldn't assume that forceful heartbeats are related to an issue with pulse pressure - but mention to your dr and they will give you the proper advice, explanation. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 7, 2016 Report Share Posted May 7, 2016 I don't know why I didn't mention this before, but when my pulse pressure is narrow, I actually have a very weak, thready pulse and can not particularly feel my heart beat. Quote Link to comment Share on other sites More sharing options...
Lissa1707 Posted May 7, 2016 Report Share Posted May 7, 2016 On May 6, 2016 at 7:55 PM, Sam1 said: I see the exact issue. Using an Alivecor device I record stuff all the time to catch patterns. It's extremely difficult to read ECGs without training, but I have noticed that when the 'thumping' occurs, the R wave from the QRS complex normally goes further down than during the QRS of a normal beat, and the Q wave does not necessarily go as high (even when tachy kicks in). Attaching some images of personal device reports I just downloaded. The first is a normal recording, the second is one where the heavy heart beat/thumping is occurring. So you are definitely not alone with this issue. Sam1, Can you tell me more about this device? I have an underlying arrhythmia and have done 30 day holters multiple times but haven't caught it on the monitor. We assume SVT based on symptoms but this seems like a great product especially to capture what the rhythm looks like she symptomatic. Do you have to wear electrodes? Also Spring--I too have the bounding heart rate without tachycardia sometimes. Mine worsens when I'm hypoglycemic or if I have just eaten but there's never a correlation to my BP or heart rate. Hormone cycle also affects mine very uncomfortable when it is occurring-I would rather be tachy -Lisa Quote Link to comment Share on other sites More sharing options...
Spring Posted May 8, 2016 Author Report Share Posted May 8, 2016 I really appreciate everyone sharing. Nice to know, sadly, that I am not the only one who experiences this. Assuming more will be revealed when I get in to see a real POTS specialist. As I wait, I am grateful for the posts. Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted May 8, 2016 Report Share Posted May 8, 2016 Hi Spring I am a Newbie to the site but have been diagnosed with ... Well you can read the list below lol i didn't have time to read every post so I apologize if I am repeating something already said. My EP/Cardiologist put me on a beta blocker that blunts the tachycardia from POTS and for the IST (inappropriate sinus tachycardia). But there are still lots of times that I have the same symptoms I had before being on the beta blocker even though my HR might only be in the 70s or 80s instead of 150s. I still feel shaky, palpitations, short of breath etc. I have read particularly about IST - that you can experience the symptoms even when being treated. Not sure if this is helpful or not. Good luck - hope you get things figured out quickly ? Kaitlyn Quote Link to comment Share on other sites More sharing options...
Sam1 Posted May 9, 2016 Report Share Posted May 9, 2016 On 5/7/2016 at 11:58 AM, Lissa1707 said: Sam1, Can you tell me more about this device? I have an underlying arrhythmia and have done 30 day holters multiple times but haven't caught it on the monitor. We assume SVT based on symptoms but this seems like a great product especially to capture what the rhythm looks like she symptomatic. Do you have to wear electrodes? Also Spring--I too have the bounding heart rate without tachycardia sometimes. Mine worsens when I'm hypoglycemic or if I have just eaten but there's never a correlation to my BP or heart rate. Hormone cycle also affects mine very uncomfortable when it is occurring-I would rather be tachy -Lisa It's at www.alivecor.com My electrophysiologist told me to buy one. If you have an iphone, they are built into the case. I have an android and got the universal one. It has been worth its weight in gold, any time I just touch the app, put my fingers on the pads for 30 seconds and viola a legit ecg. These are FDA approved, my cardiologist has me send him the pdf's when there is a question about something, and on Thursday at the autonomic clinic, I took in about 20 print outs showing how my pulse jumps 30-40 standing up, drops sitting down, jumps standing up, drops sitting down constantly within a matter of just 4-5 minutes over various dates and times of the day. The funny/messed up part about this is that I had an implanted loop recorder put in my chest that doesn't catch as many episodes as I can with the alivecor device. I asked the EP why he had me implant the device (at about $3k copay/out of pocket) when this thing does almost the same stuff for $99. He said "you got the implant a few months before alivecor was approved by the FDA".... dangit! If you go to their site you can see how it works, you do not have to wear anything and you always have your cell nearby so it's easy to catch an episode when they pop up. Quote Link to comment Share on other sites More sharing options...
HangingByAThread Posted August 3, 2017 Report Share Posted August 3, 2017 I have the Alivecor monitor as well and I love it (got it when it first came out and it has since been improved so I'm on my second one now). It has given me peace of mind because I can take recordings any time and then email them to my doctor or print them out for upcoming doctor appointments (being on an event monitor was costing me $50-$100 a day even with insurance). There have been times when I've called an ambulance but by the time they arrived, they told me to "calm down" and asked "have you ever been diagnosed with anxiety?" but I whip out the monitor and they are amazed (because they haven't seen one) and when they see the heart rate and EKG readings, they take me seriously. There have been times that by the time I got to the ER, my heart is totally fine but I'm dizzy or have the shakes, and I just whip out my monitor and the hospital can read the EKG and see what my heart was up to. It has saved me a ton of money because I don't have to go to my EP a million times and when I do see him, he can review all the EKGs and realize that it is "more of the same" and that I haven't developed any additional heart rhythm problems. Also, if I'm really having a bad episode and go to the ER, they don't keep me there all night - they can email my doctor's team the reading and then I eventually get the go-ahead to go home and don't have to be kept for observation. I think the best thing about Alivecor is that all the doctors have no choice but to take me seriously and nobody questions whether I'm anxious or it is all in my head. Quote Link to comment Share on other sites More sharing options...
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