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?

This side of heaven we are always going to have \"issues\". I am thankful that their are folks we can talk with about our particular \"issues\". I see my pacemaker as a miracle. Mine was inserted almost three years ago for bradycardia and without it I would probably not be here. My heart would stop beating for 6 seconds at a time-apparently that raised some eyebrows. I\'m not saying life with a pacemaker is all fun and joy but it was an option and I ran with it. I am on Metoprolol ER 25mg-which I break in half and take twice a day-12 hours apart. Last fall I was started on Eliquis as AFIB has popped up in my monitoring. When AFIB entered the scene I went through several tests and everything came back normal, fine, A okay. I was encouraged to up my exercise game and I have. I don\'t know when the Afib strikes I seem to be asymptomatic. As I told the cardiac nurse there are days I feel sluggish so I nap but those days are few and far apart. In April I will turn 64. I retired four years ago. I would suggest having a B12 level drawn if you are low on that vitamin you can be run down as well along with other symptoms. I have been B12 deficient for lots of years and just a few years ago learned by dad was also. He was bone dry and now has back the energy level an 86 year old should have if not better. Just a thought. Thanks for reading, thanks for sharing and I will keep each of you in my prayers. Thank you MAYO clinic.

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Well, my resting is down on the metoprolol. At first was 55 to 60 but has been creeping up over the last year. Probably at about 80 during the day. Weight is not an issue for me although I did lose about 15 pounds over the last six months because of a diet change. It is just always so interesting that though are hearts are beep-bopping all over the place — that all is "normal". Really severe palpitations can be so disconcerting. So I really get it when people are anxious about that.

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Hi, my name is Tim. I received a heart transplant 12 years ago. I have had 5 stents in my new heart and 2 years ago had a pacemaker installed because of a Brady event. Needed adjustment early on but doing well now. Taking meds to help regulate irregular heartbeat. Thanks for allowing me to participate.

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@ryman

Hi, I am Ryman. The first I really noticed my palpitations was back in the summer. I was kneading bread and my heart just started pounding. In October my heart rate dropped to 20. So I received a pacemaker. Actually, I have had a lot of trouble with it. They replaced the lead in January. The last two weeks while grocery shopping I had pain and a pounding heart. They checked my heart and the pacemaker and said they were both fine. I am having a stress test tomorrow. I have a daughter and two grandsons. My husband passed away 4 years ago. So I live with my oldest grandson.

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No, Mayo did not do this. My surgery was in Buffalo, NY. I was told that I could have MRIs before they left the dead lead in. Then they said I couldn’t. I hate those tests anyway. Best of luck to you.

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@bjork579 Hello Tim

I see that this is your first post on Connect. Welcome! I am glad that you have chosen to participate. I am very impressed with all of the good cardiac treatment you have had, including a heart transplant. I'd like to introduce you to @rosemarya. Rosemary is the volunteer mentor of the Transplant discussions and has had two transplants herself (kidney and liver). I am sure she would like to welcome you to post in her discussion groups as well.

I look forward to reading more of your posts.

Teresa

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Hi, My name is Barbara. I will be 79 tomorrow and I have had heart palpitations, which are under control. My husband Adrian is 95, has had a valve replacement, and has a fib. He has no pain or discomfort, but "I can't run down the street like I used to."
It's nice to know there are other people out there with experience with our health issues.

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@babs2519

Hi, My name is Barbara. I will be 79 tomorrow and I have had heart palpitations, which are under control. My husband Adrian is 95, has had a valve replacement, and has a fib. He has no pain or discomfort, but "I can't run down the street like I used to."
It's nice to know there are other people out there with experience with our health issues.

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@babs2519 Hello Barbara:

I see this is just your second post on Connect. Welcome! I so appreciate your post – you and your husband have a delightful sense of humor. When you said, "It's nice to know there are other people out there with experience with our health issues," you stated one of the most important purposes of Connect. As we all share our experiences, we learn from each other and don't feel so all alone in our situation.

I am Teresa, a volunteer mentor on Connect. I too have some heart problems, including aortic insufficiency, LBBB, diastolic dysfunction and some rapid heart beats that come and go.

If you care to share, when was your husband's valve replacement? Has he done well since that procedure?

I look forward to hearing more from you in the future.

Teresa

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@skymya

Hi!
Am 39 years of age. Last year on May 18 I had at least 2 heart attacks, blood clots, complete rental shutdown and grand mal seizures. I was in a coma for 9 days and it took 75 days for me to get back home to my 5 kids/husband. I now have a irregular heart beat,heart damage, beats to fast tachycardia and my blood doctor thinks i have APLS a blood clot autoimmune disorder also so blood thinners for the rest of my life.. I was supposed to have a EPS ablation tomorrow with the option for a defibrillator but the doc office called now its next month. I had chest pain off and on for a few years but just blew it off as stress/panic attacks. My mother had Afib for a number of years and two ablation later is Afib free now. Happy to start talking to others and learning their stories.
Amber

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It was postponed due to the doctor not being available.
It was confirmed yesterday that i do have primary APLS and that I dont have lupus.
I also have bilateral footdrop that is finally almost gone after months of PT and have been walking unaided for 3 months now with just a few issues with balance.
I have been having a bit of side pain. So am afraid my kidneys might be having issues again and don't wish to go back on dialysis again if i can avoid it. My last dialysis catheter developed multi clots in my jugular. :/
Its been a lot this last year that's for sure but am doing great.

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@skymya

Hi!
Am 39 years of age. Last year on May 18 I had at least 2 heart attacks, blood clots, complete rental shutdown and grand mal seizures. I was in a coma for 9 days and it took 75 days for me to get back home to my 5 kids/husband. I now have a irregular heart beat,heart damage, beats to fast tachycardia and my blood doctor thinks i have APLS a blood clot autoimmune disorder also so blood thinners for the rest of my life.. I was supposed to have a EPS ablation tomorrow with the option for a defibrillator but the doc office called now its next month. I had chest pain off and on for a few years but just blew it off as stress/panic attacks. My mother had Afib for a number of years and two ablation later is Afib free now. Happy to start talking to others and learning their stories.
Amber

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@skymya I appreciate your sharing your most recent diagnosis of APLS. I would be interested in hearing more about that. Could you explain how that was diagnosed?

Teresa

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@skymya

Hi!
Am 39 years of age. Last year on May 18 I had at least 2 heart attacks, blood clots, complete rental shutdown and grand mal seizures. I was in a coma for 9 days and it took 75 days for me to get back home to my 5 kids/husband. I now have a irregular heart beat,heart damage, beats to fast tachycardia and my blood doctor thinks i have APLS a blood clot autoimmune disorder also so blood thinners for the rest of my life.. I was supposed to have a EPS ablation tomorrow with the option for a defibrillator but the doc office called now its next month. I had chest pain off and on for a few years but just blew it off as stress/panic attacks. My mother had Afib for a number of years and two ablation later is Afib free now. Happy to start talking to others and learning their stories.
Amber

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Sure.. Its usually only diagnosed after an issue has happened such as a blood clot. They do a blood draw and check for 3 different things, anticardiolipin, beta-2 glycoprotein I (β2GPI), and lupus anticoagulant. I came back neg on the lupus but have both of the others. Then a 12 weeks wait or so and repeat the test again because some blood thinners and heart attack meds can give a false positive after a major event such as I unfortunately had. Yesterday was my second positive test results.
I also cant follow my own INR at home due to error reading caused by the APLS proteins.

If I had followed up with a doctor after i had blood clots 3 days after giving birth 17 years ago with preeclampsia, both warning signs of APLS, I might have been diagnosed earlier.

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@skymya

Hi!
Am 39 years of age. Last year on May 18 I had at least 2 heart attacks, blood clots, complete rental shutdown and grand mal seizures. I was in a coma for 9 days and it took 75 days for me to get back home to my 5 kids/husband. I now have a irregular heart beat,heart damage, beats to fast tachycardia and my blood doctor thinks i have APLS a blood clot autoimmune disorder also so blood thinners for the rest of my life.. I was supposed to have a EPS ablation tomorrow with the option for a defibrillator but the doc office called now its next month. I had chest pain off and on for a few years but just blew it off as stress/panic attacks. My mother had Afib for a number of years and two ablation later is Afib free now. Happy to start talking to others and learning their stories.
Amber

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@skymya I appreciate the information. Is there a treatment for APLS?

Teresa

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@skymya

Hi!
Am 39 years of age. Last year on May 18 I had at least 2 heart attacks, blood clots, complete rental shutdown and grand mal seizures. I was in a coma for 9 days and it took 75 days for me to get back home to my 5 kids/husband. I now have a irregular heart beat,heart damage, beats to fast tachycardia and my blood doctor thinks i have APLS a blood clot autoimmune disorder also so blood thinners for the rest of my life.. I was supposed to have a EPS ablation tomorrow with the option for a defibrillator but the doc office called now its next month. I had chest pain off and on for a few years but just blew it off as stress/panic attacks. My mother had Afib for a number of years and two ablation later is Afib free now. Happy to start talking to others and learning their stories.
Amber

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Only treatment is Blood Thinners and as i have had different clots in different parts of my body it will be for life now. :/

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I'm guessing this topic has come up in the past, but I didn't find it (yet) in my searching, so I hope it's ok that I'm posting this question.

I started having palpitations (and associated mild light-headedness, weakness) in late December. I work with an ENT doctor who wanted me to go to the ER, just to be safe. Everything came back normal there (EKG, bloodwork, 2 day holter monitor). Then I met with my provider (NP), who ordered an echocardiogram and stress test, both of which came back normal. Because the symptoms persisted and actually became more frequent, I asked my provider if she would refer me to a cardiologist, and she did. However, the cardiologists reviewed my file and, through my provider, said they would not see me, as I'm just having 'benign palpitations'. Working in the health field (at this same small hospital/clinic), I'm just blown away that they won't even see me. So, my question is whether I should look further (i.e., different/larger medical facility, which, of course, won't be covered nearly as well by my insurance), as I don't want to overlook something serious (I have a 3-year-old little girl who needs her Mom), or should I just assume these cardiologists are right, and, since all of the major tests came back normal, just not worry — just a 'benign' symptom. ?? Curious what you all would suggest/do in my shoes?… Thanks, in advance!

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