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Heart Rhythm Conditions – Welcome to the group

Posted by Kanaaz Pereira, Connect Moderator @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?

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

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kates1221 | @kates1221 | Feb 14, 2020
In reply to @predictable "Hi @kates1221. Glad to see you again on Mayo Connect. You and I share the problems..." + (show)
Profile picture for Martin Jensen, Volunteer Mentor @predictable

Hi @kates1221. Glad to see you again on Mayo Connect. You and I share the problems of A-fib and high blood pressure. I have several years "enjoying" the challenges involved and dealing with them with the help of a very capable medical team -- Internist, Nephrologist, Cardiologist, and Anticoagulation Specialist. None of them has told me "there is no cure" for A-fib OR hypertension, but they have said I should expect to be on medication, at least, until we find a therapy to stabilize my symptoms and carry on my life. I have three medications for hypertension (Carvedilol, Lisinopril, and Amiloride diuretic). I also take Coumadin, a "blood thinner" (or more properly an anticoagulant drug) to prevent formation of blood clots within my heart when its rhythm is disturbed and fails to move blood through promptly. My arrhythmic medication to modulate my heart rate is Carvedilol, a beta blocker. In my case, my medical team and I have asked each other about cardioversion and ablation and have decided each time that my symptoms and the risks don't make either treatment necessary right now. Send along any questions that occur to you and might prompt me for more information of use to you.

Finally, though, this one recommendation: Get a second opinion from a well-known, recognized authority on arrhythmia and how to treat it -- your state university medical clinic is one possibility. Have you discussed with your heart doctor the possibility of referral for a second opinion? Martin

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Hi @predictable. I take Losartan for hypertension, Chlorthalidone which I think is a diuretic, and Diltiazem to help my rapid heart rate and Xarelto. I was hospitalized for three days, during which time my cardiologist tested for heart blockages and found none. While I was in the hospital, every few minutes a nurse was in my room to check to to see If I was still breathing because of my extremely low heart rate. I know that because of my athletic background and low resting heart rate is not unusual. However, my doctor was concerned because of how quickly the rate accelerated once I started to move around so he prescribed the Diltiazem. It just may be all in my head, but I could swear that I didn't start experiencing the hard thumping in my chest or the racing heart rate until I started all these meds. I had no idea I was in afib or had hypertension until I went to see a doctor about pain in my shoulder. I was told during the initial exam that my blood pressure was high and that I was in afib and was immediately referred to a cardiologist. It wasn't until after I started treatment that I started to feel the symptoms. Fatigue, chest thumping, chest pain. I've not felt normal since. I am definitely going to seek a second opinion because I just want to feel better. I can't believe that this is what I have to deal with for the rest of my life. It's been almost a year and I don't think I'll ever get used to feeling like this. I envy you having a medical team that communicate with each other.

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dyannne | @dyannne | Feb 14, 2020
In reply to @attrwtgary "My name is Gary diagnosed at Mayo 5.25.15 with ATTRwt. Doctors at OHSU have kept me..." + (show)
Profile picture for attrwtgary @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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It was my experience that it took about a month to feel really better after my ablation.

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shortshot80 | @shortshot80 | Feb 14, 2020
In reply to @attrwtgary "My name is Gary diagnosed at Mayo 5.25.15 with ATTRwt. Doctors at OHSU have kept me..." + (show)
Profile picture for attrwtgary @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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attrwtgary | @attrwtgary | Feb 14, 2020

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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yoanne | @yoanne | Feb 14, 2020
In reply to @eileena "Thanks @yoanne. Never knew the actual nomenclature, only "ocular migraines". That is exactly what mine were...." + (show)
Profile picture for eileena @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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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 13, 2020

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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bill54321 | @bill54321 | Feb 13, 2020
In reply to @oldkarl "OldKarl here. I am already a member of several other Mayo groups. When you have multiple..." + (show)
Profile picture for oldkarl @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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bill54321 | @bill54321 | Feb 13, 2020
In reply to @karen420 "Hi, I am Karen from Vegas right now I go to Nevada Heart and Vascular. I..." + (show)
Profile picture for karen420 @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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mayofeb2020 | @mayofeb2020 | Feb 13, 2020
In reply to @kates1221 "I spoke with my doctor about CO Q10 when he put me on xarelto and he..." + (show)
Profile picture for kates1221 @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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kates1221 | @kates1221 | Feb 13, 2020
In reply to @mayofeb2020 "Don't be discouraged. My son-in-law takes exercises very seriously.. he rows and uses the Pelaton. He..." + (show)
Profile picture for mayofeb2020 @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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