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?

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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Hello @miamom,

Welcome to Connect. You may notice that I moved your discussion into the Heart Rhythm group. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their loved ones' experiences.

I can imagine how worrying your symptoms must be! Here's some information about palpitations, when to see a doctor, etc. from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/heart-palpitations/symptoms-causes/syc-20373196

If the Holter monitor didn't pick up any irregular beats or if the events occur less than once weekly, your doctor might recommend an event recorder.
The device records your heartbeat so that your doctor can assess the heart rhythm when you have symptoms. You might wear an event recorder for several weeks. https://www.mayoclinic.org/diseases-conditions/heart-palpitations/diagnosis-treatment/drc-20373201

@miamom, while we wait for other members to join in, could you share a bit more about your symptoms? Do you notice any triggers? Do you have any accompanying discomfort, dizziness, or feeling faint? I'd sincerely encourage you to keep talking and asking questions.

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oops, sorry! looks like we were in contact with each other at the same time! 🙂

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@kanaazpereira

Hello @miamom,

Welcome to Connect. You may notice that I moved your discussion into the Heart Rhythm group. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their loved ones' experiences.

I can imagine how worrying your symptoms must be! Here's some information about palpitations, when to see a doctor, etc. from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/heart-palpitations/symptoms-causes/syc-20373196

If the Holter monitor didn't pick up any irregular beats or if the events occur less than once weekly, your doctor might recommend an event recorder.
The device records your heartbeat so that your doctor can assess the heart rhythm when you have symptoms. You might wear an event recorder for several weeks. https://www.mayoclinic.org/diseases-conditions/heart-palpitations/diagnosis-treatment/drc-20373201

@miamom, while we wait for other members to join in, could you share a bit more about your symptoms? Do you notice any triggers? Do you have any accompanying discomfort, dizziness, or feeling faint? I'd sincerely encourage you to keep talking and asking questions.

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Thank you, Kanaaz!! Thank you for the information — I look forward to reading it! Thank you for forwarding my message to the proper spot on the website! And, thank you for validating my concerns. Sometimes I feel like, 'maybe it's all in my head?', 'maybe I'm making a mountain out of a molehill', 'maybe it's just anxiety? or my morning coffee?', as so many people have suggested to me during this time-frame. I do have times of feeling stressed and anxious (like most people, I would imagine), but no more now than usual. Could it still be the reason for my symptoms starting in late December (and continuing to this day)? I do drink a couple cups of coffee each morning (I have for years); could that suddenly be causing my symptoms? I have recently started drinking less, to see if that helps. So far, I don't really notice a difference.

I do feel light-headed and rather weak for a few seconds — and sometimes I almost feel like I can't catch my breath — when I have a 'spell', and I just don't feel well, in general, for the short time that the palpitations happen. Then I'm good for awhile…until the palpitations happen again. I haven't determined any triggers yet. I keep looking for some sort of pattern. They happen when I'm active/moving about and when I'm relaxing/sitting/lying in bed. They happen at all times of the day. The two-day holter monitor did pick up some instances of both tachycardia and bradycardia (with no pattern to when/what I was doing/etc) , some even when I was sleeping, but they said there was no arrhythmia (I think that's how it was worded…). There were no recommendations listed on that monitor report, so I'm guessing tachycardia and bradycardia are not a problem/big deal, as long as there is no arrhythmia? I just feel so clueless about all of this and want to feel more educated/informed/confident. I wish the cardiologists who read my monitor and test results would have at least included an explanation/some information, especially since it turned out that they won't see me….

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