Iheartfrogs217 Posted August 9, 2013 Report Share Posted August 9, 2013 Hi everyone! I was diagnosed with POTS about a half a year ago and I noticed that today my heart seemed to be triple beating or having an irregular rhythm. Does anyone else with POTS ever experience this? Also does your pulse seem strong and some days and weaker on other days? Any information would be helpful! Thank You!! Quote Link to comment Share on other sites More sharing options...
Racer Posted August 9, 2013 Report Share Posted August 9, 2013 It might help to talk to your cardiologist about the palpitations and maybe getting a 24hr (or longer) ekg. Many types of irregular heart rhythms are very dangerous. Because of my history of long qt intervals and abnormal rhythms, I dont mess around when I experience problems with palpitations, I go to the hospital for a ekg and fluids. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 10, 2013 Report Share Posted August 10, 2013 Ditto to what Racer said.It may be a good idea to have a thorough cardiac work-up if you haven't had one already.From my experience, I definitely have days when my heart seems to pump blood more forcefully (so to speak) and I noticed it has to do with my pulse pressure (the difference between the systolic and the diastolic pressure). According to a some the "normal" pulse pressure is around 40 mmHg; mine is usually lower than that whenever I get these forceful beats. See if this is something that makes sense to you and bring it to your dr's attention.Last, but not least, welcome to our community. I hope we're going to be able to help you find some answers.Best,Alex Quote Link to comment Share on other sites More sharing options...
Iheartfrogs217 Posted August 10, 2013 Author Report Share Posted August 10, 2013 Thanks Racer and Alex for your feedback! I recently had an EKG done and everything came back normal. So do you think these triple beats are dangerous and not related to POTS? It will be hard for me to get to a doctor soon as I don't have insurance. Also if you don't mind me asking when did you find out about your dysautonomia and heart problems and how old are you both? I'm 16 and I'm wondering if age makes a difference in symptoms and complications? Thanks again for all you're help! Quote Link to comment Share on other sites More sharing options...
Racer Posted August 10, 2013 Report Share Posted August 10, 2013 Thanks Racer and Alex for your feedback! I recently had an EKG done and everything came back normal. So do you think these triple beats are dangerous and not related to POTS? It will be hard for me to get to a doctor soon as I don't have insurance. Also if you don't mind me asking when did you find out about your dysautonomia and heart problems and how old are you both? I'm 16 and I'm wondering if age makes a difference in symptoms and complications? Thanks again for all you're help!A ekg will only take a snapshot of what the heart is doing at that particular time you are doing the test. I have had dozens of them, with various different results from totally normal results, to ones with obvious issues. With the ambulatory ekg you wear the ekg around for 24+ hours while it records, in the hope it catches one of the irregular rhythms. Like if a person is experiencing palpitations daily, then a 24hr ekg might catch a episode, but if they are experiencing them only once a week, it might take wearing the ekg much longer in order to catch a episode. These recoders also have event buttons, that you push if you are experiencing symptoms like palpitations, and this helps the doctor pinpoint what you are experiencing.I am in my late 20's, and although I was born with disabilities, I was diagnosed with dysautonomia and various related issues over the past couple years.If you are 16, is it possible to get on your parents insurance? If that is not possible, you could try your local assistance office. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 10, 2013 Report Share Posted August 10, 2013 Welcome to DINET!Have you had a 24 hr holter monitor or event recorder? To offer a different perspective--what you are experiencing could be PVCs and PACs. Many POTS patients do experience these. They are benign. But it is good to have this confirmed.I have times when I experience many of these. It certainly can be scary when it feels like your heart might be malfunctioning. For me, sometimes it feels like extra beat or beats (maybe what you mean by triple beats). More often, for me, it feels like a delayed beat and then a big thump. I can have strings of these--like several in a minute, when I am in a flare up.Does it resolve at all if you take more fluid? That will sometimes help me.Also have you had electrolytes checked? If electrolytes are even slightly off, it can touch off more of these. Eating foods or drinking beverages high in potassium could help. I find coconut water helps me.Also I find caffeine can make these worse. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 10, 2013 Report Share Posted August 10, 2013 Iheartfrogs,there really is no way for me - or anyone on dinet actually - to be able to tell what kind of rhythm abnormalities you may be experiencing, that is the reason why I suggested a cardiac work-up. Having the electrical activity of your heart recorder over a longer period of time and then properly evaluated by a cardiologist should provide you with some answers to your questions, and perhaps some much needed reassurance.I had times when I was absolutely sure that I was dealing with some dangerous arrhythmias or that I was on the verge of a heart attack. A Holter monitor recording (well several in my case) helped me identify those episodes and my cardiologist explained to me that while they are bothersome and yes, scary they are entirely benign so my life is not in danger because of them.Alex Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 10, 2013 Report Share Posted August 10, 2013 Forgot to answer some of your questions.I'm in my 30's and I was diagnosed with dysautonomia (POTS and NCS ) in January of last year after approx 6 mo of symptoms (random episodes of tachycardia accompanied most of the time by chest pain). In July of last year after being reevaluated, my diagnosis changed to POTS only. I'd say I'm still a novice at this but I've learned a lot about my condition in the past year or so.(NCS - neurocardiogenic syncope) Quote Link to comment Share on other sites More sharing options...
Iheartfrogs217 Posted August 10, 2013 Author Report Share Posted August 10, 2013 Thanks for all of your advice again! I have an appointment on Monday so we'll see how it goes! I'm sorry to hear that we're all going through the same sort of thing. It can be really tough sometimes. I hope they find a cure soon! God bless you all and give us all rest! Quote Link to comment Share on other sites More sharing options...
Relax86 Posted August 10, 2013 Report Share Posted August 10, 2013 The benefit of the cardiac work up for me was that my palpitations were found to be nothing therefore I don't have to worry about it when it happens. I can breath thru it and try to relax. I do believe most states have programs for children under the age of 18. Quote Link to comment Share on other sites More sharing options...
Iheartfrogs217 Posted August 13, 2013 Author Report Share Posted August 13, 2013 Hey everyone just an update. I went to the doctor today and they said my heart was normal and healthy! It's so nice to have a piece of mind! As for insurance my parents don't have any either because my family is self employed.Relax86: do you know where I could apply for state insurance? Quote Link to comment Share on other sites More sharing options...
Racer Posted August 13, 2013 Report Share Posted August 13, 2013 Hey everyone just an update. I went to the doctor today and they said my heart was normal and healthy! It's so nice to have a piece of mind! As for insurance my parents don't have any either because my family is self employed.Relax86: do you know where I could apply for state insurance?Great that everything is normal and healthy! Just want to say, if you feel otherwise and are not happy with your symptoms, be persistent. Doctors only tends to look for the most obvious issues at first. When you are not happy, the more you complain, the deeper they look and the more layers they will peel back. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted August 13, 2013 Report Share Posted August 13, 2013 Relax86: do you know where I could apply for state insurance?What state are you in? And congrats on your good news!! Quote Link to comment Share on other sites More sharing options...
Iheartfrogs217 Posted August 13, 2013 Author Report Share Posted August 13, 2013 Relax86: I live in Wisconsin. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted August 15, 2013 Report Share Posted August 15, 2013 Try and google Badger Care. I think that's the name of the program in your state that offers health insurance for children. Try this number as well 1-800-362-3002. Let me know how it works out. Good luck Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted August 16, 2013 Report Share Posted August 16, 2013 I have irregular beats all the time. Missed beats (pvc's) and SVT and non-sustained v tach. Quote Link to comment Share on other sites More sharing options...
chicago58 Posted August 20, 2013 Report Share Posted August 20, 2013 P.O.T.S. Orthostatichypotention i have been dealing with this since 2006. until recentley i have taken for granted the one thing that sticks in my mind is no matter how bad it feels this day or extended periods of time with the palpatations and SVT and standing heart rates in the 160's ++ at time. i always knew it was P.O.T.S. until the end of june.... i went 15 hours trying all of the tools in my preverbial pocket to get my heart rate down it was between 160 and 220 for 15 hours .yea i am that dumb...finally i decided this is not like pots non of my tools are working like laying down fluids ect.. so i called 911. note to self never call 911 at shift change i got 8 of them in about 3 minutes.... turned out after spending a day in ICU i am now diagnosed with atrial fibulation...don't mess around if your not sure let the docs decide.....then a few days agomy heart rate agian in 220 range for prolonged period of time it was all over the map. listened to note to self assumed a-fib not about to call 911 it was shift change.drove myself...note to self even dumber call 911 and take the 8 paramedics they were young and cute anyway...all my asumptions were wrong after all these years you would think i would have it down...nope severe potassiun deficiencey as of yet undetermiined how...no abvious reason and was normal two weeks ago. but low potassium can also cause andcardiac arrythmia....note to emergency room how will i every convince them they need to give me two bags of i.v fluid and not one and i won't come back....i am doing much better but if you are in the least doubt the cardiolagist will be the first one to tell you there is no way to tell the difference without an ekg and having the monitor left on for the hours you are in e.r. long but recently hard learned lessons Quote Link to comment Share on other sites More sharing options...
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