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?

@mayofeb2020

My thoughts exactly! When you go to doctors, they want to know all the meds you are taking, all the numbers like cholesterol, bp etc, but seldom do they ask what you eat or your lifestyle. If they ask a patient to describe what's in his/her pantry or refrigerator, they would probably have been able to diagnose the patient's health issue with better clarity. I'm getting a loop implant to test fir afib and my doctor also puts me on zeralto and statin even though my cholesterol level is ok. I'm taking CO Q10 as statin depletes me of coq10 in my body. I called zeralto and they don't know if it will interfere with the medication.

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May I make a suggestion. Our hospital blood thinning lab was staffed with a pharmacist. They knew the foods to avoid.

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OldKarl here. I am already a member of several other Mayo groups. When you have multiple systemic diseases, all incurable and all eventually fatal, everything of body, mind and spirit is up for grabs. For my heart rhythm issues, I have frequent spells of tachy, early or extra beats, slow, diastolic disorders, dilated cardiomegaly, QRS bounces, etc. These have been dXed as many different disorders, from excess vitamin D to Polio to Amyloidosis. I have a list of about 100 different dX in my 80 years. The current certain dXes impacting the heart include RyR1, RyR2, FKTN, Gelsolin, CAA, RA, Radon, Chronic Bronchiectasis, Cancers: Prostate, Thyroid, Melanoma, Esophageal. Married 60 years, 4 children, 10 grandchildren, 18 great grandchildren (including 2 Marine Great Grandsons)

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Hi, I am Karen from Vegas right now I go to Nevada Heart and Vascular. I am a school teacher with the severally emotionally disturbed kiddos in a special school. In the last 2 years I have had a stroke, 2 heart Caths, and now I have a Defibulator ( i did not spell that right). I am going to go on a disability retirement because I am not 65 and my husband and I are going to move to Jacksonville Florida so I can be close to the Mayo Clinic and get out of this hot hot heat. I am only working to save money and pay off some bills, I am so excited to come that I wish I could leave right now. I am the mother of 10 children and have 21 grandchildren and I want to live. Thank you for letting me express myself, no one at works understand my situation or how I feel.

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Hi all, I'm just catching up on all the messages posted the last couple of days and have some useful information to share regarding how to use Mayo Clinic Connect, related discussions, and starting new discussions.

First Tips on How to Use Connect
@backpacker2020 asks "Is there a way to search the discussions for a particular topic/condition?"
You can use the main search bar, which can be found at the top of any page. Learn more tips from members in this discussion
– How to Search on Connect – It can help you! https://connect.mayoclinic.org/discussion/search-it-can-help-you/

Also, find a group relevant to your interests in the Group Directory: https://connect.mayoclinic.org/groups/

@lov asks "How do we tell where the new messages are?"
You can sort the discussion from Newest to Oldest to see the newest post first. This article explains further, with pictures
– [TIP] Customize the Order You View Posts – See New Posts First https://connect.mayoclinic.org/discussion/new-customize-the-order-you-view-posts-see-new-posts-first/

You may also be interested in this article.
– Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

Learn more about how to use Connect in the How to Get Started guide: https://connect.mayoclinic.org/get-started-on-connect/
Follow the About Connect blog for tips and how-to instructions https://connect.mayoclinic.org/page/about-connect/

If you have any technical issues or questions, send me an email using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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@kates1221

I was diagnosed with afib and high blood pressure. I was put on a blood thinner, medicine to keep my heart from racing and two blood pressure medicines. I was told that my afib is permanent and has no cure. Has anyone been told this and should I get a second opinion on whether or not an ablation will help me? I am a former dancer and life long exerciser. I also had surgery to repair a hole in my heart at age six. I am 66 years old and this is the first time I've had trouble with my heart. I was also told that years of physical exercise and prior heart surgery probably predisposed me to the problems with my heart. Any help will be greatly appreciated.

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Hi @kates1221, many members suggested getting a second opinion. Here's an article about the value of second opinions that may interest you:
– Mayo Clinic researchers demonstrate value of second opinions https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/

For all, you may be interested in watching this archived Expert Q&A. Mayo Cardiologists Christopher McLeod and K.L. Venkatachalam discuss Atrial Fibrillation (AFib) symptoms, causes, risk factors, and more.
– Video Q&A about Atrial Fibrillation https://connect.mayoclinic.org/webinar/video-qa-about-atrial-fibrillation/

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@mayofeb2020

My thoughts exactly! When you go to doctors, they want to know all the meds you are taking, all the numbers like cholesterol, bp etc, but seldom do they ask what you eat or your lifestyle. If they ask a patient to describe what's in his/her pantry or refrigerator, they would probably have been able to diagnose the patient's health issue with better clarity. I'm getting a loop implant to test fir afib and my doctor also puts me on zeralto and statin even though my cholesterol level is ok. I'm taking CO Q10 as statin depletes me of coq10 in my body. I called zeralto and they don't know if it will interfere with the medication.

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I spoke with my doctor about CO Q10 when he put me on xarelto and he said it was ok.

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@eileena

Natural methods are really great. However, since MDs get so little training in nutrition and the pharmaceutical industry does really have heavy hands in getting MDs to embrace the drugs they manufacture there is little room for natural methods.

Try changing your MD for an Osteopath. They do have more nutrition education in their curriculum path to earn that Osteopath title. But some of them are reluctant to buck the pharmaceutical industry and the AMA.

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This makes perfect sense. Thank you.

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@mayofeb2020

Don't be discouraged. My son-in-law takes exercises very seriously.. he rows and uses the Pelaton. He had afib for years and had a couple of ablations. Finally, he found a cardiologist in Texas who found that there was a genetic issue that other cardiologists in CA (where we live) did not see. He had an operation and he does not have afib anymore. Actually this Texas cardiologist told him he can go back to his exercise routine the week after the operation. He is no longer on any meds. I had a TSI and now my cardiologist is testing me for afib. I had a loop implant. I'm glad I found this forum. My daughter knows alot about afib because of her husband's experience and she's a comfort. I'm blessed. I have a family history of strokes so I eat very clean, do not smoke or drink and I am not overweight. I can only walk everyday because of my back problems resulting from a horrific car accident when a car ran a light and hit my car. I hope you can be positive and know that you will get better! A second opinion is a good thing.

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Thank you so much.

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@kates1221

I spoke with my doctor about CO Q10 when he put me on xarelto and he said it was ok.

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Thank you so much. I appreciate it.

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@karen420

Hi, I am Karen from Vegas right now I go to Nevada Heart and Vascular. I am a school teacher with the severally emotionally disturbed kiddos in a special school. In the last 2 years I have had a stroke, 2 heart Caths, and now I have a Defibulator ( i did not spell that right). I am going to go on a disability retirement because I am not 65 and my husband and I are going to move to Jacksonville Florida so I can be close to the Mayo Clinic and get out of this hot hot heat. I am only working to save money and pay off some bills, I am so excited to come that I wish I could leave right now. I am the mother of 10 children and have 21 grandchildren and I want to live. Thank you for letting me express myself, no one at works understand my situation or how I feel.

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I am one of 9 children.. You qualify for the title of Super Hero, Much luck to you.

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@oldkarl

OldKarl here. I am already a member of several other Mayo groups. When you have multiple systemic diseases, all incurable and all eventually fatal, everything of body, mind and spirit is up for grabs. For my heart rhythm issues, I have frequent spells of tachy, early or extra beats, slow, diastolic disorders, dilated cardiomegaly, QRS bounces, etc. These have been dXed as many different disorders, from excess vitamin D to Polio to Amyloidosis. I have a list of about 100 different dX in my 80 years. The current certain dXes impacting the heart include RyR1, RyR2, FKTN, Gelsolin, CAA, RA, Radon, Chronic Bronchiectasis, Cancers: Prostate, Thyroid, Melanoma, Esophageal. Married 60 years, 4 children, 10 grandchildren, 18 great grandchildren (including 2 Marine Great Grandsons)

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I'm am a 90 year old Korean veteran. It is the pit to get old. But, I think the best is yet to come. It you enlist to many groups, it will take all day to go through e-mail. This is a good group. Enjoy yourself

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Throughout this discussion many of you have talked about lifestyle changes, healthy activity and eating habits. Here are some discussions that you may wish to read and add your comments.

Physical Activity
– A-fib and exercise: What's good? What's not? https://connect.mayoclinic.org/discussion/a-fib-and-exercise/
– Exercise-induced Hypertension https://connect.mayoclinic.org/discussion/exercise-induced-hypertension-systolic-230/
– Staying healthy physically (and mentally) post heart attack https://connect.mayoclinic.org/discussion/hi-there-i-just-now-joined-your-group-and-after-reading-a/
– Thinking of getting watch-monitor to track A-fib. Thoughts?https://connect.mayoclinic.org/discussion/apple-watch-1/

Healthy Eating
– Recipes and Tips for a Low Sodium and Low Potassium Diet https://connect.mayoclinic.org/discussion/low-sodiumlow-potassium-diet/
– Can beet juice lower your blood pressure? https://connect.mayoclinic.org/discussion/i-have-read-online-that-drinking-beet-juice-can-lower-your-blood/
– Coffee drinking habits: Change them after coronary bypass surgery? https://connect.mayoclinic.org/discussion/coffee-drinking/
– How do I begin living a healthy lifestyle to benefit my heart? https://connect.mayoclinic.org/discussion/this-is-now-the-second-time-in-the-past-3-12-years/

@healthytoday, I would be grateful if you would start a new discussion about Heart Disease & Depression. I know that you are not alone in struggling with both of these and I'm confident that members would appreciate having a place to talk about it.
You can start a new discussion by:
1. Go to the Heart Rhythm Conditions homepage https://connect.mayoclinic.org/group/heart-rhythm-conditions/
2. Click the grey button START A DISCUSSION
3. Enter a title and write a message to get the conversation going.
4. Click POST DISCUSSION.

All members: Is there a topic or discussion you'd like to start?

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@eileena

Thanks @yoanne. Never knew the actual nomenclature, only "ocular migraines". That is exactly what mine were. I no longer have to endure them.

When I went on the web I saw some persons had taken the time to make gifs of the visual effect. Mine looked like crescents of leaded glass but were not like stained glass as they had no color effects. Began having them around the time I turned 43 and had great amounts of stress coming from supervisor and the effects of caring for a disabled teen who even at age 41 needs care that due to age (I'm now 70) and heart problems is more difficult for me to provide.

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hello eileena,
I forgot to mention in my post, that I had the first one at the age of 20, now I am 73 years old, I still have them, actually one hour ago it happened. There is no headache afterwards. At the age of 54 I had my first migraine headache, without an aura, like the scintillating scotoma. There is no connection between the headache and scint. scotoma, they come apart from each other . 2016 I had a heart operation (mitral valve reconstruction- minimal invasive), afterwards the number of the visual problems went up, sometimes 4 or 5 after each other. Nobody could tell me the reason. The situation now is, nearly every day I have the scotoma, sometimes very short, only 5 minutes, other full until the edge – 20 minutes. Migraine headache once a week. I am fed up with it. All the profylactic medications did not work. So I decided to make an appointment in a special migraine/headache department of an university clinic /Cologne- Germany. I will go there 16 april. , earlier not possible.
so, you know my story now. I am not worried about the scotomas.But I hope to get an answer !

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@attrwtgary

My name is Gary diagnosed at Mayo 5.25.15 with ATTRwt. Doctors at OHSU have kept me going with clinical research trials and have been doing good.Recently needed to have ablation procedures and have been tired every since.

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Hi Gary, I had ONE attack of heart rhythm after I fell and broke my hip. I didn't know I had that problem at the time, but just after my surgery on my hip, my heart went back to normal rhythm. That was on January 19, 2019. I haven't had any more problems with that. I do have two kinds of Lung cancer that I have be dealing with since 2016. I also have had a pacemaker for 11 years. I have had 35 surgeries over my life time. I will be 87 nest month. Nancy (shodrtshot)

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