Heart Rhythm Conditions – Welcome to the group

Welcome to the Heart Rhythm Conditions group on Mayo Clinic Connect.
Did you know that the average heart beats 100,000 times a day? Millions of people live with heart rhythm problems (heart arrhythmias) which occur when the electrical impulses that coordinate heartbeats don’t work properly. Let’s connect with each other; we can share stories and learn about coping with the challenges, and living well with abnormal heart rhythms. I invite you to follow the group. Simply click the +FOLLOW icon on the group landing page.

I’m Kanaaz (@kanaazpereira), and I’m the moderator of this group. When you post to this group, chances are you’ll also be greeted by volunteer patient Mentors and fellow members. Learn more about Moderators and Mentors on Connect.

Let’s chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Heart Rhythm Conditions group.

@rittagal

I am not sure if I am on the right discussion, but hoping for some help from anyone. One neurologist says POTS. Next one said you absolutely do not have POTS. Doctor at Vanderbilt said maybe a minor case, but is not what is causing my issues. Had heart ablation in 2013 and the developed bilateral PEs a few months later. I swim two times a week and do exercises in floor twice a week, but when trying to walk I get so out of breath that I sometimes just go down right there. No dizziness. No feeling of passing out. No issues unless I am on my feet. The 50 steps to the pool water is close to impossible, while the laps I swim are like normal exercise. All heart and lung tests are all good. MAYO turned me down too. Anybody have any suggestions ? Thanks. Glenna

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I don’t know if my comment will help but because of your symptoms description, I may have a clue for you. I was born with a birth defect in my heart, a 1 in a million defect. After much research, it wasn’t until 2021 that I discovered I had WPW, Wolff, Parkinson, White Syndrome. I had lived 77 years with all the heart problems I have, not realizing it was WPW causing everything, including 3 heart attacks. Does this description sound familiar? I call them Spontaneous Blackouts! One second you’re standing, the next second you’re on the floor/ground wondering what you might have injured from the fall. There’s no warning at all with very little knowledge of what just happened. There’s no dizziness, lightheadedness, like fainting causes, just complete and instant unconsciousness. With that knowledge in hand and a pcp willing to help me prove my case of WPW, I realized I was seeing the wrong heart specialist. I needed to be seen by an Electrophysiologist Cardiologist, a specialist in Heart Rhythm issues. My heart is now being monitored 24/7 by an expensive loop heart recorder emplaned in my chest to track down the bad heart cells causing my problems, so they can be destroyed. You’ve had a ablation but that may not have solved your problem because my heart defect is actually a short circuit loop of cells between the SA Node and the AV Node which an Electo Cardiologist could find. Since you didn’t mention what type of doctor did it, I just wanted to tell you of my experience with Blackouts. Good luck.

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@becky1024

I don’t know if my comment will help but because of your symptoms description, I may have a clue for you. I was born with a birth defect in my heart, a 1 in a million defect. After much research, it wasn’t until 2021 that I discovered I had WPW, Wolff, Parkinson, White Syndrome. I had lived 77 years with all the heart problems I have, not realizing it was WPW causing everything, including 3 heart attacks. Does this description sound familiar? I call them Spontaneous Blackouts! One second you’re standing, the next second you’re on the floor/ground wondering what you might have injured from the fall. There’s no warning at all with very little knowledge of what just happened. There’s no dizziness, lightheadedness, like fainting causes, just complete and instant unconsciousness. With that knowledge in hand and a pcp willing to help me prove my case of WPW, I realized I was seeing the wrong heart specialist. I needed to be seen by an Electrophysiologist Cardiologist, a specialist in Heart Rhythm issues. My heart is now being monitored 24/7 by an expensive loop heart recorder emplaned in my chest to track down the bad heart cells causing my problems, so they can be destroyed. You’ve had a ablation but that may not have solved your problem because my heart defect is actually a short circuit loop of cells between the SA Node and the AV Node which an Electo Cardiologist could find. Since you didn’t mention what type of doctor did it, I just wanted to tell you of my experience with Blackouts. Good luck.

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Thank you so much for taking the time to respond. I never had issues until about a year after a wreck. I had been on a backpacking trip in Alaska a few months before, so guessing I was in good health. After my shortness of breath started I had heart and lung tests. Was not severe enough then to keep me from doing my job, which was very physical, but took the fun out of any activity. Had my first heart cath in ‘98 and a second in 2017. I never faint or lose consciousness; I just get do out of breath that my muscles just give in. No body will look for anything new. The doctors comments are, “your lungs are better than average. You have no cardiac issue. “. So, again I appreciate your response. I can’t even get an app with the only doctor here who deals with heart rhythm issues. He was the one who did the ablation for extreme, out of the blue, tachycardia which did not start until 2010 and it took care of that. I hope your doctors are going to help you. Thanks again.

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@rittagal

Thank you so much for taking the time to respond. I never had issues until about a year after a wreck. I had been on a backpacking trip in Alaska a few months before, so guessing I was in good health. After my shortness of breath started I had heart and lung tests. Was not severe enough then to keep me from doing my job, which was very physical, but took the fun out of any activity. Had my first heart cath in ‘98 and a second in 2017. I never faint or lose consciousness; I just get do out of breath that my muscles just give in. No body will look for anything new. The doctors comments are, “your lungs are better than average. You have no cardiac issue. “. So, again I appreciate your response. I can’t even get an app with the only doctor here who deals with heart rhythm issues. He was the one who did the ablation for extreme, out of the blue, tachycardia which did not start until 2010 and it took care of that. I hope your doctors are going to help you. Thanks again.

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It is very hard to get an appointment with an Electrophysiologist Cardiologist here too. That’s why I asked my pcp to help me set up my presentation in order to convince the doctor to at least hear my information in person. We did such a good job, the doctor said he’d see me during his lunch break. This heart rhythm doctor is the top doctor of 35 other doctors, that’s how good he is. So the first thing my pcp and I did was order a Zio exterior heart monitor that was placed on my chest for two weeks. The results were interesting because it showed I was having issues with tachycardia while in my sleep. The highest rate was 164 but for only a short period of time. There were other episodes just like it but less than 164. Now here’s my point, if that doctor had only thought my regular pathway was messed up, he might have done an ablation to stop the tachycardia, and missed the actual cause, the loop of short circuit heart cells from my heart birth defect. So besides the Zio monitor, we set up my past history with passing out since I was 10yo. I did the research for WPW and found out I had all the symptoms. We included all that information and that did the trick, he saw me during his lunch break because he’s so in demand. Using the information I had presented, he asked me many questions and seemed interested in my case. Then I remembered something I had failed to include in the presentation, the spontaneous blackout episodes. That did the trick because I had had them since I was ten and many times since then. When I explained how quick they occurred, he reached in his pocket and showed me the loop heart recorder he wanted to implant in my chest just under my left breast. Its battery’s good for 5 years so I’m being monitored 24/7 by the company out in Oregon and I’m in Pennsylvania. What needs to be done, is to map out each rouge heart cell causing the short circuit to trigger my tachycardia and be destroyed one heart cell at a time. If it gets mapped out correctly, it could take up to 10 hours to do the procedure. I’ll be strapped to the table unconscious because you can’t move even a tiny bit or, well, you know. If they can’t map it out in time, I’ll go into tachycardia within one hour while I’m asleep and if I don’t wake up in time, I’ll go into A-fib and then have my fatal heart attack. I’ve had it happen twice since 2013 but lucky me, I woke up about 50 minutes after falling asleep and was able to get help, that first event was recorded at 197 bpm. So as you can see, those spontaneous blackouts proved the trick to finding my heart rhythm problem. Both events happen before I had the recorder implanted or saw my Specialist.

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Hi. My name is Ruth. I am 71 years old. I was diagnosed with a fib a little over a year ago and got a pacemaker then. I’m taking Eliquis, metoprolol, and flecainide and have been doing very well until early this morning when I went into afib which is still going on. It freaks me out a little. Thanks all of you for being here. It helps just to say it out loud.

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@ruthz

Hi. My name is Ruth. I am 71 years old. I was diagnosed with a fib a little over a year ago and got a pacemaker then. I’m taking Eliquis, metoprolol, and flecainide and have been doing very well until early this morning when I went into afib which is still going on. It freaks me out a little. Thanks all of you for being here. It helps just to say it out loud.

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Hi Ruth,
I am sorry you are going through an AFib episode, they are not pleasant. When I had my 7 hour AFib episode earlier this year, I was on “pill in the pocket” meds to use for an AFib episode (Flecainide and metoperol tartrate). I took both meds, and messaged my Cardiac Electriphysiologist because I was out of state. He told me if I did not convert back to sinus rhythm by the morning, then to go to the emergency department for a cardioversion. Contact your doctor for instructions. Some Cardiology offices do Cardioversions in the office or have other suggestions. Let us know how you are doing.

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@janet23

Hi Ruth,
I am sorry you are going through an AFib episode, they are not pleasant. When I had my 7 hour AFib episode earlier this year, I was on “pill in the pocket” meds to use for an AFib episode (Flecainide and metoperol tartrate). I took both meds, and messaged my Cardiac Electriphysiologist because I was out of state. He told me if I did not convert back to sinus rhythm by the morning, then to go to the emergency department for a cardioversion. Contact your doctor for instructions. Some Cardiology offices do Cardioversions in the office or have other suggestions. Let us know how you are doing.

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Thanks for telling me about your experience. This helps so much. My episode lasted four hours and it’s the first episode I have had since the pacemaker and meds. I will definitely contact my EP to get his recommendation for if it happens again. Thanks too for sending the very helpful link.

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Hello, I'm Denise married with grown kids & grandson.
I was diagnosed with LBBB a year ago, as well as cardiomyopathy & CHF. After trying to get the meds right– my blood pressure bottoms out, the cardiologist want a hemodynmic cath & possible CR-T anyone have experience with this?

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I am not sure if my introduction and question from this from this morning posted? Happy 4th everyone!

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Hi Denise,
I had a Right Heart Cath (RHC) with exercise and hemodynamic monitoring at Mayo. I am not sure what test CRT is. Are you interested in know about my experience? I was diagnosed with HFpEF (heart failure with preserved ejection fraction), a type of heart failure. I was having symptoms of hypoxia (low blood oxygen), chest tightness, near fainting spells, dyspnea, low blood pressure, and arrhythmias.

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@janet23

Hi Denise,
I had a Right Heart Cath (RHC) with exercise and hemodynamic monitoring at Mayo. I am not sure what test CRT is. Are you interested in know about my experience? I was diagnosed with HFpEF (heart failure with preserved ejection fraction), a type of heart failure. I was having symptoms of hypoxia (low blood oxygen), chest tightness, near fainting spells, dyspnea, low blood pressure, and arrhythmias.

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Hi Janet
I am still navigating this web site and did not see your answer until not. Yes I would like to know more about what your experience is with the Cath test with exercise was like? I have dilated cardio myopathy and CHF as well as an arrythmia Left Bundle Block, I have had alot of trouble with medications causing low b/p and fatigue as well and continues chest tightness and shortness of breath.

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