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?

I'm not sure if I'm registered with this group or not. I did post some information about me, but it may not have been recorded. I am a 71 yr. old male that is suffering from apical hypertrophic cardiomyopathy and non sustained ventricular tachycardia. I think I have had every test possible including echo's,ecg's, nuclear stress test, heart catheterization, and cardiac mri., and wore a holter monitor twice; one for 24 hrs. and the other for 48 hrs. Due to the complexity of my problems, I have been referred to a specialist. Unfortunately, my appointment isn't until Jan. 28. The appointment was made the middle of Nov. I'm wondering what the next step(s) in this adventure will be? I have been several different medications including metoprolol and verapamil for some time, and my symptoms haven't changed. I have read that there are a couple of surgeries that can be done if medications are not working. If anyone could enlighten me as to what to expect, it would be appreciated. This whole issue started last June. I'm getting more and more anxious. Seven months of waiting for some kind of treatment is wearing pretty heavy on my mind. I use to be a very active person. Being told not to do any strenuous exercise or labor, and the fact that I have gained around 7 lbs. is very frustrating. Is it normal to go through a waiting period before any kind of treatment is suggested? Any advice would be appreciated. Thanks, Dennis

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My understanding is that the only way to get immediate attention is to go through emergency. So although I wish you stability until your appointment at the end of the month, do not hesitate to go to the emergency department for the smallest symptom or change in your condition. Anything heart related gets triaged and attended to immediately. But the best thing about it is that a cardiologist will visit you and likely order a batter of tests. Even if he or she says that your condition does not warrant immediate attention and that you are stable, you will at least be reassured that you should be alright until your appointment. Another upside to an emergency room visit is that the tests will give more information to your cardiologist at your upcoming appointment. I wish you well!

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@ch665296f

I'm not sure if I'm registered with this group or not. I did post some information about me, but it may not have been recorded. I am a 71 yr. old male that is suffering from apical hypertrophic cardiomyopathy and non sustained ventricular tachycardia. I think I have had every test possible including echo's,ecg's, nuclear stress test, heart catheterization, and cardiac mri., and wore a holter monitor twice; one for 24 hrs. and the other for 48 hrs. Due to the complexity of my problems, I have been referred to a specialist. Unfortunately, my appointment isn't until Jan. 28. The appointment was made the middle of Nov. I'm wondering what the next step(s) in this adventure will be? I have been several different medications including metoprolol and verapamil for some time, and my symptoms haven't changed. I have read that there are a couple of surgeries that can be done if medications are not working. If anyone could enlighten me as to what to expect, it would be appreciated. This whole issue started last June. I'm getting more and more anxious. Seven months of waiting for some kind of treatment is wearing pretty heavy on my mind. I use to be a very active person. Being told not to do any strenuous exercise or labor, and the fact that I have gained around 7 lbs. is very frustrating. Is it normal to go through a waiting period before any kind of treatment is suggested? Any advice would be appreciated. Thanks, Dennis

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Yes, if you're struggling and fearful, I'd go to emergency. They will hospitalize you if they think it's necessary. I don't know those conditions.

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@ch665296f

I'm not sure if I'm registered with this group or not. I did post some information about me, but it may not have been recorded. I am a 71 yr. old male that is suffering from apical hypertrophic cardiomyopathy and non sustained ventricular tachycardia. I think I have had every test possible including echo's,ecg's, nuclear stress test, heart catheterization, and cardiac mri., and wore a holter monitor twice; one for 24 hrs. and the other for 48 hrs. Due to the complexity of my problems, I have been referred to a specialist. Unfortunately, my appointment isn't until Jan. 28. The appointment was made the middle of Nov. I'm wondering what the next step(s) in this adventure will be? I have been several different medications including metoprolol and verapamil for some time, and my symptoms haven't changed. I have read that there are a couple of surgeries that can be done if medications are not working. If anyone could enlighten me as to what to expect, it would be appreciated. This whole issue started last June. I'm getting more and more anxious. Seven months of waiting for some kind of treatment is wearing pretty heavy on my mind. I use to be a very active person. Being told not to do any strenuous exercise or labor, and the fact that I have gained around 7 lbs. is very frustrating. Is it normal to go through a waiting period before any kind of treatment is suggested? Any advice would be appreciated. Thanks, Dennis

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Dennis, the other postings recommend going to the ER if you feel poorly, which I certainly agree with. The ER's job is to eliminate any life threating issues. If that means admitting you, they will do it. Whether that gets you closer to the right doctor is undetermined. I think a Board Certified Electrophysiologist is the next person I would see after reading your issues. These type of doctors understand the electrical functions of the heart and can offer recommendations as to the next step. Weight gain can sometimes be attributed to erratic heart rhythms unless you can account for an increase in foods. I use a diuretic when I see an increase that can not be related to too much food containing salt. I have a history somewhat relative to yours. It was posted on this media on November 13 by marlynkay. Good luck.

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Hi my name is Juan, I’m 31 years old, I have a flutter besides some other issues in my heart

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Thanks, my story – I’m 56, I’ve noticed palpitations since early adulthood. They grew more frequent and bothersome by my 30s. There were a few times I literally felt like my heart was stopping and I would often feel light headed when this happened. It was quite scary and I would relay to doctors that I thought I was in serious danger. They would check me out and tell me everyone has palpitations, and perhaps I was just anxious. At age 39 I passed out while swimming in the ocean and woke up underwater. I eventually was monitored and a short run of V Tach was noted. Then during an EP study the doctor was able to induce Vfib. I got an ICD and it went off over the years, but the device also noted other short runs that stopped on their own. To be honest, the ICD shock itself was never much of an issue for me, but the idea that the device was trying to treat a life threatening emergency most certainly was. I also had worsening mitral valve prolapse. I eventually had a mitral valve repair which helped with symptoms, though I still had more events during exercise. The puzzle with me was that exercise (catecholamines) was a trigger, and as my valve got worse, it became easier to observe VT on a treadmill test. I eventually got a sympathetic denervation, and then a second EP study, which included an extensive ventricular ablation. The doctor confirmed tissue / electrical abnormality around the mitral valve, which was giving rise to the malignant arrhythmias. Since this procedure I have not have an event though it is still worrisome and the medications take getting used to (toprol and flecainide). I seem to be one of the few people with bileaflet mitral valve prolapse that coincides with malignant arrhythmias. My guess is more will be learned about this condition (my honest guess is that this condition may result in more unexplained sudden deaths than documented today). I also suspect that more research and more advanced mapping and ablation techniques may offer more treatment options in the future.

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I am 60 y/o with 3 grown children and 3 grandchildren. I’m also the 8th of 12 children. I had my first Tachycardia episode in my 20’s. I saw a cardiologist who gave me vagal maneuvers to bring me back to normal rhythm which worked on the rare occasion I needed them until last year. Last year my episodes increased and the vagal maneuvers quit working. Each episode lasted 20-30 minutes and normal rhythm returned on its own. Despite extensive investigation in the past year and having an event monitor for 2 months, I hadn’t been able to record an episode so doctors could evaluate effectively. Last week, I got to ER immediately and now have a better understanding. It’s SVT, which likely will need ablation to correct. I’m looking forward to a solution.

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@ksf60

I am 60 y/o with 3 grown children and 3 grandchildren. I’m also the 8th of 12 children. I had my first Tachycardia episode in my 20’s. I saw a cardiologist who gave me vagal maneuvers to bring me back to normal rhythm which worked on the rare occasion I needed them until last year. Last year my episodes increased and the vagal maneuvers quit working. Each episode lasted 20-30 minutes and normal rhythm returned on its own. Despite extensive investigation in the past year and having an event monitor for 2 months, I hadn’t been able to record an episode so doctors could evaluate effectively. Last week, I got to ER immediately and now have a better understanding. It’s SVT, which likely will need ablation to correct. I’m looking forward to a solution.

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What are "vagal maneuvers"? Have you tried meds to keep the heart in rhythm?

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Hi my name is Tom. I’m a seventy year old white male. I have recently been diagnosed with PVCs. They came on like a thief in the night with the principal symptom being inability to draw breath (fluid in left lung). My PCP, refered me to a Pulmonologist who in turn sent me to a Cardiologist. ECG disclosed the PVCs. Echo cardiogram showed really bad efficiency. Cardiac MRI to look for damage (still waiting for interpretation), and ablation scheduled in two weeks. Currently taking metropololol and a diureticbut the condition is barely controlled. I would love to know a couple of things like: what did I do to cause these? I’ve always been a competitive or amateur swimmer and distance runner. Heart never had a problem before.

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@healthytoday

What are "vagal maneuvers"? Have you tried meds to keep the heart in rhythm?

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As I understand it, Vagal stimulus include bearing down, inflicting pain upon yourself, inducing vomiting, and a host of other types of methods to stimulate an epinephrine response to change your rhythm. No meds prescribed yet because they didn’t know exactly what they were dealing with.

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@tomr

Hi my name is Tom. I’m a seventy year old white male. I have recently been diagnosed with PVCs. They came on like a thief in the night with the principal symptom being inability to draw breath (fluid in left lung). My PCP, refered me to a Pulmonologist who in turn sent me to a Cardiologist. ECG disclosed the PVCs. Echo cardiogram showed really bad efficiency. Cardiac MRI to look for damage (still waiting for interpretation), and ablation scheduled in two weeks. Currently taking metropololol and a diureticbut the condition is barely controlled. I would love to know a couple of things like: what did I do to cause these? I’ve always been a competitive or amateur swimmer and distance runner. Heart never had a problem before.

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Hi Tom,
high end athletic stress on your heart can cause it. many olympic athletes have it.
best wishes,
Larry

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@tomr

Hi my name is Tom. I’m a seventy year old white male. I have recently been diagnosed with PVCs. They came on like a thief in the night with the principal symptom being inability to draw breath (fluid in left lung). My PCP, refered me to a Pulmonologist who in turn sent me to a Cardiologist. ECG disclosed the PVCs. Echo cardiogram showed really bad efficiency. Cardiac MRI to look for damage (still waiting for interpretation), and ablation scheduled in two weeks. Currently taking metropololol and a diureticbut the condition is barely controlled. I would love to know a couple of things like: what did I do to cause these? I’ve always been a competitive or amateur swimmer and distance runner. Heart never had a problem before.

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Sorry to hear of your problems. This is rarely a medical condition with a quick fix. PVCs can often be thought of in oversimplifjed terms as an electrical signal bouncing off a zone of bad tissue. The signal can often be rerouted by destroying the related path, but only if a specific location giving rise to the pvc can be observed. This is often done by observing the number and types of pvcs recorded on a 24 hour test, or when mapping during a study when an ablation is to be attempted.

Then there are meds

Doctors will almost always start with safe medicines that might not be as strong. They can often rotate through medicines, or combinations, to see which work and what you can tolerate. It’s always about balancing the risk of the PVCs vs the side effects of the meds. In some cases they will not start a new med unless you are in the hospital hooked up so that you can be observed

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@johnpny

Sorry to hear of your problems. This is rarely a medical condition with a quick fix. PVCs can often be thought of in oversimplifjed terms as an electrical signal bouncing off a zone of bad tissue. The signal can often be rerouted by destroying the related path, but only if a specific location giving rise to the pvc can be observed. This is often done by observing the number and types of pvcs recorded on a 24 hour test, or when mapping during a study when an ablation is to be attempted.

Then there are meds

Doctors will almost always start with safe medicines that might not be as strong. They can often rotate through medicines, or combinations, to see which work and what you can tolerate. It’s always about balancing the risk of the PVCs vs the side effects of the meds. In some cases they will not start a new med unless you are in the hospital hooked up so that you can be observed

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@lalton , @johnpny thank you both. I seem to have lucked into a string of experienced cardiologists with good credentials. The PVCs were dramatic enough (number, effect) for them to skip quickly to ablation before more damage to the muscle occurs. I only wish I could blame it on being a high end athlete but I am not that rigorous. The docs did the monitor and are pretty sure of the general location of the aberrant cells so I’m hopeful. Thanks again.

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@johnpny

Sorry to hear of your problems. This is rarely a medical condition with a quick fix. PVCs can often be thought of in oversimplifjed terms as an electrical signal bouncing off a zone of bad tissue. The signal can often be rerouted by destroying the related path, but only if a specific location giving rise to the pvc can be observed. This is often done by observing the number and types of pvcs recorded on a 24 hour test, or when mapping during a study when an ablation is to be attempted.

Then there are meds

Doctors will almost always start with safe medicines that might not be as strong. They can often rotate through medicines, or combinations, to see which work and what you can tolerate. It’s always about balancing the risk of the PVCs vs the side effects of the meds. In some cases they will not start a new med unless you are in the hospital hooked up so that you can be observed

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@johnpny
You are of course correct about the information. I had beed victim to PVCs for a very long time and have the resultant damage they cause. Various tests, including 2 of those stress inducing tests done with chemicals as I could not run a tread mill prior to my bypass and then the increase from 10/minute(2013) to 20/minute(2015). While I was in hospital for 3 days prior to and then 4 days following the bypass the monitors were able to give a very clear picture to the M.D.s so they were able to basically spot the exact location to ablate.

Had not realized until now that those days of monitoring were what were needed to pinpoint the exact location of the nerve that was misfiring. I still get them, but not more than 3/minute and then only under great stressful conditions. My cardiologist told me that having the Bradycardia (as low as 36BPM while sleeping) can allow the stray PVC, but they happen while my BPM is often higher, and not while I'm sleeping.

To monitor the PVCs I own a portable ECG device that slaps on the back of an iPOD or could go on an iPhone. It is from Kardia. I do not feel the PVCs as they are not as strongly felt, but that could be due to the damage initially done to my heart by the excessive PVCs.

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Hello, sorry to hear about your suffering. I also have PVCs but they were originally classified as rare 2 yrs ago. They now seem to be ramping up as I have had several episodes in just the last month.
I am told that my symptoms are unusual, so if anyone else has the same symptoms please let me know.
Episodes start with elevated BP, 200/90 ish, my heart is pounding 100+, I get diarrhea pretty fast after it all starts, then sometimes I throw up or just feel nauseous. The episodes last anywhere from 1-5 hours. I’m told that these symptoms are not typical.
I have a Doc appointment tomorrow to discuss next steps.
BTW, I have the Kardia app, it doesn’t have the capability to report PVCs, so now I’m not sure why my Doc told me to get it!? Any heart rate data over 100 doesn’t get captured and shows as “unclassified”, so not real helpful.

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