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 Support Group.

@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

Jump to this post

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

Teresa

REPLY

Hello Tim @bjork579

I'd like to add my welcome and thank you for joining this group on Connect. I thought you might also wish to view some of the conversations taking place in these discussions about Transplants:

– Transplant stories that inspire: What's yours?https://connect.mayoclinic.org/discussion/patient-stories/
– Heart transplant https://connect.mayoclinic.org/discussion/heart-transplant-231a15/

REPLY
@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

Jump to this post

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

REPLY

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!

REPLY

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.

REPLY

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

REPLY
@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.

Jump to this post

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....

REPLY
@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.

Jump to this post

Maybe I should also add that my heart rate is almost always within normal limits (although it has been noted to be elevated a few times recently, since the start of all of this), my blood pressure is always normal or even low (90/60, 100/60), I'm generally in good physical health (although could certainly stand to work out more :)), I'm pretty active with my job (I'm a clinical and educational audiologist), I'm 5'10", 150 lbs., and my family history includes my maternal grandfather who had valve replacement and pacemaker placement. Sorry if this is more information than needed! 🙂

REPLY
@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.

Jump to this post

And, a couple of people (one nurse, one doctor) have questioned a possible heart murmur when listening to my heartbeat...

REPLY

Welcome aboard. If you don't mind me asking-being snoopy-what work up have you had beyond the two day event monitor? Next questions are you scheduled with a cardiologist? Or perhaps you were. On this site you will find many different heart events happening and so many wonderful people sharing and offering encouragement. Me, personally, I was dealing with bradycardia which required a pacemaker. I am not a coffee person so I can't say that was my trigger. I had 6 second pauses register on a 30 day event monitor that required more investigating. I have a strong heart just not a consistent normal sinus rhythm but then I was found to have junctional node rhythm decades ago that didn't represent itself to be a serious concern-now I am not so sure. But then the PM has been an important component for me. Here's to hoping the "mystery" gets resolved for you.

REPLY
Please sign in or register to post a reply.