Share this:

Heart Rhythm Conditions – Welcome to the group

Posted by @kanaazpereira, Feb 14, 2018

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?

REPLY

Welcome to Connect, @enfermo. I'd like to introduce you to a few members who've shared their thoughts about the medications you mentioned. Please meet @kenny48 @jackj @karenatmayo @jigglejaws94 @grandmar @mikefox909 @teatime @faith123 @dfsmitty @twptrustrek @mac4life @crashnam. I’d also like to bring @predictable and @hopeful33250 into this discussion.
If it helps, I have been taking Losartan for years to treat my hypertension, and have done well on it, with no side effects.

You may also be interested in reading and joining in these discussions:
– Atrial fibrillation and medication side effects https://connect.mayoclinic.org/discussion/side-efectshopeful33250
– Afib & PVC's https://connect.mayoclinic.org/discussion/afib-pvcs/
– New to Afib, warfarin and metoprolol (beta blocker) https://connect.mayoclinic.org/discussion/new-to-afib-warfarin-and-metoprolol-beta-blocker/

@enfermo, what are your main concerns about the meds?

Hello to the moderator … Thank you for volunteering @knaazpereira. Am I the only one who can NOT feel or witness any lumps bumps or drum beats from my heart housed inside my big chest? Oh yes … once I felt a substantial and memorable loud flutter in my chest under the rib cage … wentq on for 14 seconds … The nurse was soooooo happy that some thing at last happened after three days of resting in a white gown … she ran out of the room to remind those listening to my heart from another place in the hospital that an important event had occurred. The next day the stage was set for me to have a cathater ablation in that the medications were not working to lower my heart beat of 100. Trying to kill with HEAT the offending site in my heart and to stop the wrong message of too much electricity emanating full blast ahead… Never did a feel anything more than that flutter that started the stage curtain to open… The catherization did NOT work. Maybe it was because the Doctor, an Electrophysiologist … And of course an cardiologist was too careful losing courage to go too close to the five metal? clips holding firmly the edge of my new repaired tricuspid and mitral valves. Now, I am thinkingundsvton about my cardiologist who whispered plan that I should go for another ablation … This time with a qdifferent electrophysiologistyn. Having my heart beats 80-100q beats a minute is too fast … Such speed could produce a STROKE. So prayers will be in the menue for the night along with any sudden and bright ideas as to how to proceed. Would a pacemaker be good idea to keep the beats in balance? Already have embedded a RevealLINK that sends the the beats to the lab to assist the docs in figuring the next step. Maybe it could be a pacemaker … Any thoughts on this?
K

I'm Gayl

@calli

Hi, Gayl! Do you have any questions for the group?

@calli

I have a very low EF at 30% and am told I need a pacemaker defibrillator, any info on how to deal with a defitbrilator? They are quite large and afraid of how it will look as I am a small thin person.

My daughter who is 11 has been having fast heart rates for over 2 yrs now. They pound so hard you could see it. The first and only time a doctor saw it was a field day and it was going so fast she couldn’t get it. She sent us to get an ekg and a referred us to a ped cardiologist. The ekg said Long qt. The cardiologist said just a glitch no way she had that. Now over 2 years later 3 different cardiologist, multiple heart monitors which showed beats over 200, tachycardia, sinus rhythm, and on a beta blocker for over a year we still have NO diagnosis. She repeated a stress test Good Friday in which the doctor said SVT. But all 3 cardiologists all say no. She even had one of those doctors tell us it was normal to have fast heart rates and nothing was wrong with her. Really? Never heard of that being normal. She was tested for Lyme 2 years ago after having a tick on her stomach after visiting an animal shelter. She’s been misdiagnosed with pheochomocytoma and a benign tumor on her brain. Why is it 3 doctors in 2 different states can’t figure this out. She has no energy but wants to play sports. She’s also afraid her heart will start pounding again and will have to quit. Somebody please help us figure this out. Getting her retested for Lyme this week. Any and all suggestions are welcomed.

@rkincaid

My daughter who is 11 has been having fast heart rates for over 2 yrs now. They pound so hard you could see it. The first and only time a doctor saw it was a field day and it was going so fast she couldn’t get it. She sent us to get an ekg and a referred us to a ped cardiologist. The ekg said Long qt. The cardiologist said just a glitch no way she had that. Now over 2 years later 3 different cardiologist, multiple heart monitors which showed beats over 200, tachycardia, sinus rhythm, and on a beta blocker for over a year we still have NO diagnosis. She repeated a stress test Good Friday in which the doctor said SVT. But all 3 cardiologists all say no. She even had one of those doctors tell us it was normal to have fast heart rates and nothing was wrong with her. Really? Never heard of that being normal. She was tested for Lyme 2 years ago after having a tick on her stomach after visiting an animal shelter. She’s been misdiagnosed with pheochomocytoma and a benign tumor on her brain. Why is it 3 doctors in 2 different states can’t figure this out. She has no energy but wants to play sports. She’s also afraid her heart will start pounding again and will have to quit. Somebody please help us figure this out. Getting her retested for Lyme this week. Any and all suggestions are welcomed.

Jump to this post

As a mother, my heart goes out to you. Having fast heart rates and feeling your heart pound like it is going to jump out your body, or feel it trip now and again, is very, very stressful. My heart started doing that when I was 27 and now I am 67. So for 40 years I have had it off and on. I have learnt to live with it. I have never taken any medication because my doctors say it is benign. I have played tennis all my life and have never had any problem with sports. I have had three c sections, and several surgeries and never had a problem. So I am sorry I cannot suggest any course of action other than letting you know my experience. It might help you relax at least a little bit.
I have been following this blog: there are a lot of people who suffer the same problem. They suggest magnesium, which I take. I also take CoQ10. Please, keep os updated of her progress. Loli

@rkincaid

My daughter who is 11 has been having fast heart rates for over 2 yrs now. They pound so hard you could see it. The first and only time a doctor saw it was a field day and it was going so fast she couldn’t get it. She sent us to get an ekg and a referred us to a ped cardiologist. The ekg said Long qt. The cardiologist said just a glitch no way she had that. Now over 2 years later 3 different cardiologist, multiple heart monitors which showed beats over 200, tachycardia, sinus rhythm, and on a beta blocker for over a year we still have NO diagnosis. She repeated a stress test Good Friday in which the doctor said SVT. But all 3 cardiologists all say no. She even had one of those doctors tell us it was normal to have fast heart rates and nothing was wrong with her. Really? Never heard of that being normal. She was tested for Lyme 2 years ago after having a tick on her stomach after visiting an animal shelter. She’s been misdiagnosed with pheochomocytoma and a benign tumor on her brain. Why is it 3 doctors in 2 different states can’t figure this out. She has no energy but wants to play sports. She’s also afraid her heart will start pounding again and will have to quit. Somebody please help us figure this out. Getting her retested for Lyme this week. Any and all suggestions are welcomed.

Jump to this post

Hello @rkincaid

I see this is your first post on Connect and I would like to welcome you. I can imagine your concern for your 11 year old daughter and I can also understand her concern about having such a fast heartbeat. As we are not medical professionals at Connect, the best we can do is to offer you our support and encouragement.

Since you visited these 3 different cardiologists in 2 different states, it sounds like you are certainly doing your due diligence in looking for a diagnosis and some answers. You mentioned, however, Lyme Disease. Has she seen an infectious disease specialist?

Wishing you well in your search for answers. I look forward to hearing from you again with updates.

Teresa

Hello @rkincaid, I would also like to add my welcome to Connect. My daughter has Long QT Syndrome that was detected in her mid 20s. I did a search on Google Scholar (https://scholar.google.com./) and found an article that may be helpful for you. It's a good tool to find research information.

A Rapid Irregular Rhythm in a Healthy, Young Patient – How Fast Can You Go?
https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2663752

John

@rkincaid

My daughter who is 11 has been having fast heart rates for over 2 yrs now. They pound so hard you could see it. The first and only time a doctor saw it was a field day and it was going so fast she couldn’t get it. She sent us to get an ekg and a referred us to a ped cardiologist. The ekg said Long qt. The cardiologist said just a glitch no way she had that. Now over 2 years later 3 different cardiologist, multiple heart monitors which showed beats over 200, tachycardia, sinus rhythm, and on a beta blocker for over a year we still have NO diagnosis. She repeated a stress test Good Friday in which the doctor said SVT. But all 3 cardiologists all say no. She even had one of those doctors tell us it was normal to have fast heart rates and nothing was wrong with her. Really? Never heard of that being normal. She was tested for Lyme 2 years ago after having a tick on her stomach after visiting an animal shelter. She’s been misdiagnosed with pheochomocytoma and a benign tumor on her brain. Why is it 3 doctors in 2 different states can’t figure this out. She has no energy but wants to play sports. She’s also afraid her heart will start pounding again and will have to quit. Somebody please help us figure this out. Getting her retested for Lyme this week. Any and all suggestions are welcomed.

Jump to this post

Hello @rkincaid — Have you looked into genetic testing? It's how my daughters Long QT Syndrome was diagnosed. She was diagnosed and treated at Mayo Clinic.

Mayo Clinic Led Study on Long QT Syndrome Sheds Light on Genetic Testing
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-led-study-on-long-qt-syndrome-sheds-light-on-genetic-testing/

(YouTube video)

NIH – Genetic testing for long QT syndrome and the category of cardiac ion channelopathies
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3392134/

GeneDX – Tests Available:
https://www.genedx.com/test-catalog/disorders/long-qt-syndrome-lqts/

Hope you find some answers soon.

John

I am a 48 yr old female with Type I Diabetes and Addisons. I have Autonomic neuropathy which causes mild tachycardia and I am unable to tollerate steriods for the Addisons due to the Diabetes. Although I show no signs of cardiac desease, I have had 3 episodes of Vfib due to severe potassuim depletion from the Addisons. The Vfib episodes were quickly converted with no permanent damage but my ortho has started me on Tizanadine due to collapsed vertabrae and I am on a Fentanyl patch for pain mgmt. I have no history of inherited Long QT Symdrome but I am concerned about the combination of the above meds/conditions. How can I “watch” for signs of impending arythmias? Is this a ligitimate probability or just one of many “possibilities” out there? I have allergies from time to time and usually just take some sort of OTC antihistamine but I’m terrified to take so much as a Tylonol until I know I am not going to stop my heart again. How can I mitigate the risk, if there is one?

A quick medical profile:
I'm a 64 year old male
6'1" 210 lbs
Walk 4-7 miles a day
I take magnesium supplements
I drink 1 cup of coffee per day
I avoid sugar
I eat no red meat
Yet, I've had 2 heart attacks and have had 3 stents placed
Test data says the plumbing in my heart is great, but…

I experience as many as 34,000 pvc waves per day, 72% are classified as bigeminy, some trigeminy.
– To date they're benign; not increasing with exertion
– Symptomatically, I can become light headed, dizzy and sometimes short of breath
– I can be out of breath after feeding the dog, but be fine 20 minutes later doing a 3 mile walk.
– I had an attempted ablation, but the origin of the PVCs was not accessible.

I've subsequently been diagnosed with severe central sleep apnea… my breathing stops on average of once every 60 seconds (severe apnea is considered more that 20 times a hour.)

Additionally, my brain has become desensitized to the constant stopping of breaths and surges of adrenaline resulting in Cheyne-Stokes breathing.

Both of these are likely drivers of my PVC's.

I'm now on a type of CPAP; an Adaptive Servo-Ventilation (ASV) sleep machine that has eliminated the occurrence of apnea events and seemingly reduced the PVC load. By how much is hard to say until I wear a monitor again, but interruptive symptoms are down to about one hour a day.

I'm here because I want to make sure I'm not missing anything in my control that I can do to avoid a lifetime of medication without compromising my health.
Are you aware of any holistic approaches to mitigate or eliminate pvc waves or interventions not requiring meds?

Thank You!

Liked by loli

@menotpvcs

A quick medical profile:
I'm a 64 year old male
6'1" 210 lbs
Walk 4-7 miles a day
I take magnesium supplements
I drink 1 cup of coffee per day
I avoid sugar
I eat no red meat
Yet, I've had 2 heart attacks and have had 3 stents placed
Test data says the plumbing in my heart is great, but…

I experience as many as 34,000 pvc waves per day, 72% are classified as bigeminy, some trigeminy.
– To date they're benign; not increasing with exertion
– Symptomatically, I can become light headed, dizzy and sometimes short of breath
– I can be out of breath after feeding the dog, but be fine 20 minutes later doing a 3 mile walk.
– I had an attempted ablation, but the origin of the PVCs was not accessible.

I've subsequently been diagnosed with severe central sleep apnea… my breathing stops on average of once every 60 seconds (severe apnea is considered more that 20 times a hour.)

Additionally, my brain has become desensitized to the constant stopping of breaths and surges of adrenaline resulting in Cheyne-Stokes breathing.

Both of these are likely drivers of my PVC's.

I'm now on a type of CPAP; an Adaptive Servo-Ventilation (ASV) sleep machine that has eliminated the occurrence of apnea events and seemingly reduced the PVC load. By how much is hard to say until I wear a monitor again, but interruptive symptoms are down to about one hour a day.

I'm here because I want to make sure I'm not missing anything in my control that I can do to avoid a lifetime of medication without compromising my health.
Are you aware of any holistic approaches to mitigate or eliminate pvc waves or interventions not requiring meds?

Thank You!

Jump to this post

I'm in no way an expert and my symptoms are 1/8 of what you are experiencing, thus my "story" may not help. However, I too was diagnosed with PVC's (about 9,000). On top of that, I had serious sinus problems & finally had sinus surgery which cured much of my sleep problems. Sounds odd, but you might check into that because after my sinus surgery, MANY of my previous health issues vanished (I had major sinus issues; bacterial/fungal infection/polups, etc.).

Back to the heart issue. I am 44 yr old, 180 lb. and "used" to exercise a lot, but haven't done much at all in the past 15 yr. I don't smoke, drink a few beers now/then and 4 cups of coffee/d. I am overly cautious about any meds, so much that it took me many discussions with my Heart doc, a few more with a cousin who is a "brain" at Duke (heart doc) to finally try metotoprolol after diagnosed with PVC's. The 1st night of taking 25 mg pill (this is after my sinus surgery), I slept better than I have in 20 years. It was life-changing. However, you want to make sure that your blood pressure doesn't drop too low; mine never did (min. of 110/60 or so). I am not taking toporol sporadically and only 1/2 pill at a time. Was told that I could take it like tylenol; just when needed vs. every day.

Hope something in my story helps you out. I've been extremely lucky over the past 3 yr "side-stepping" malignant melanoma, getting my sinuses cleaned out, and no issues with PVCs other than discomfort at times. Travis.

Please login or register to post a reply.