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?

@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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@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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@kates1221

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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Sorry you're suspended in the midst of recovery from A-fib, @kates1221. Perhaps my other experiences can be helpful in stabilizing things — your concerns, for instance. I have used your three main hypertension drugs before, but was switched to my current mixture after discovery of a genetic defect that had my kidneys throwing away most, if not all, of my potassium. My diuretic, Amiloride, fixed that. When A-fib turned up four years ago, we focused on my heart rate for several months, but since my A-fib was mostly asymptomatic, we turned back to a broader regimen focused on my blood pressure, adding Coumadin as an anticoagulant to prevent blood clots. The anticoagulant therapy failed 20 months ago, and I got a small stroke that has a limited effect on my muscular stability, although not so serious that it keeps me from averaging 170 in our old-timers bowling league. I have three friends with A-fib who have moved through cardioversion and, ultimately, ablation; all three of them are glad they did it 3-4 years ago. I also have the "benefit" of helping my wife recover from Paroxismal Supraventricular Tachycardia (PSVT), which struck her last Spring, initiating moderate palpitations without forewarning and putting her through several months of muscular instability and related fatigue. That interrupted her daily hour-long exercise and got her thinking she was becoming disabled. Not so! No palpitations for weeks. This week, she has been up early every morning, back on her exercise regimen as in "the old days." That makes my point about exercise — it is essential for sustaining achievements in recovery and proves that recovery is and has been, in fact, happening. Good for the soul and her optimistic outlook! I hope you can soon arrange a second opinion with a medical team that takes the time, listens to your concerns, and answers all your questions. Martin

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@yoanne

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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yoanne,

I'm so sorry that you have suffered through all those problems.

I'm really glad I learned the actual name of this condition and only wish my doctors had called it the two I could learn about it.

One thing I learned recently is that they actually originate from the back of the brain. I have no idea, but know I had them badly until 5 years ago and had the ablation that caused my heart to function better.
https://medium.com/@Treatheadaches/how-to-get-relief-from-scintillating-scotoma-1d790a772b6c

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Hi. I have been diagnosed with a long and deep myocardial bridge. Am wondering if anyone knows of surgeons in the tampa bay area that are expert at unroofing surgery? thank you

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@bambi86

Hi. I have been diagnosed with a long and deep myocardial bridge. Am wondering if anyone knows of surgeons in the tampa bay area that are expert at unroofing surgery? thank you

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Hi @bambi86, Welcome to Mayo Clinic Connect. @vorhis66, @gosnell76, @stanleyta, and @rrowner2 have all had similar situations themselves or with loved ones. I would like to invite them to join the conversation. In addition, here is a recent conversation that was started about Myocardial Bridging https://connect.mayoclinic.org/discussion/myocardial-bridging/

How long have you been diagnosed? Can you tell us a little more about your situation?

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@amandaburnett

Hi @bambi86, Welcome to Mayo Clinic Connect. @vorhis66, @gosnell76, @stanleyta, and @rrowner2 have all had similar situations themselves or with loved ones. I would like to invite them to join the conversation. In addition, here is a recent conversation that was started about Myocardial Bridging https://connect.mayoclinic.org/discussion/myocardial-bridging/

How long have you been diagnosed? Can you tell us a little more about your situation?

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My husband was diagnosed with HCM 1987 at age 43 during a cardiac catheterization found the myocardial bridge, the HCM became obstructive over the years so I really don’t know if the bridging affected him. He had septal myectomy in October 2018 at Mayo Rochester and at that time the bridge was unroofed.

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Hi, I’m Barbara from Waseca Minnesota. Not sure if I’m in the right group.

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@barb61

Hi, I’m Barbara from Waseca Minnesota. Not sure if I’m in the right group.

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@barb61 Hi and welcome to connect. Mayo connect is a place where people of similar health concerns can find others who have similar issues for questions or just want to Connect with others and share experiences. There is no particular requirement to share any more than you wish but as you feel comfortable can we know what health concerns you may have or that interest you and we can get you to that particular area of interest.
To reply to a particular person like say me you can hit the reply and add the person @name for an example to get a message to me you would start by putting @danab and i will be alerted that you responded to me. So if i can be of any additional help please let me know.
Have a Blessed Day
Dana

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@barb61

Hi, I’m Barbara from Waseca Minnesota. Not sure if I’m in the right group.

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Hi @barb61, I'd like to add my welcome. What brings you to Mayo Clinic Connect? Do you have a heart condition? Are you concerned about your health?

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@crashnam

Hey there. I have lived with PVC’s for 40 years. Most times relatively tolerable during work or play. But, some times pretty bad. And, I feel everyone one of them. Skipping, jumping, fluttering, hesitating, floundering around and on and on. Started having AFIB episodes about 4 years ago, and PVC’s started getting worse and more frequent. Hundreds to thousands every day. On occasion I have a relatively good day. So, I have a couple of different issues. Still do as much as I can to help me relax. Still smoke, drink coffee and have a few beers on occasion.

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@crashman hi, sounds like I can relate to your PVCs. I’ve had them on and off for 45 years….many tests, doctors always are polite and basically conclude that my PVCs and some PACs are of a benign nature…relaxing is great advice…it’s hard to do, but when I get going with something active or hobby it takes my mind off of it….so glad to hear all of the posts on this topic…I had to quit drinking and smoking many years ago, but still have some regular coffee in the morning…..

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My name is David and I’m a disabled veteran. I have serious orthopedic problems that are very painful and contributes to my arrhythmias. I had aortic root surgery in 2001 because of a ascending aortic aneurysm. They also replaced the aortic valve because it was a bicuspid valve with signs of stenosis. The aneurysm was was discovered when I went to a cardiologist for arrhythmias, afib and occasional SVT. An ablation was attempted two weeks prior to the surgery so that the arrhythmias would not complicate the surgery. They were unable to successfully treat the arrhythmias and actually made them worse. The surgery went well and I was only in the ICU for one night. Within a couple of hours after being moved to a regular room I suffered SCD, and after being revived I was sent back to the ICU. My heart was being paced by an external pacemaker until they could place one inside my chest but that was going to take awhile because I developed HIT which caused a PE. I was removed from the heparin and put on warfarin. Three days later I had to be opened up again because of a serious infection which delayed insertion of the defibrillator. I was prescribed Sotalol and released after about a month. The SVT got worse and led to several shocks from the defibrillator, so the medication was changed to Carvedilol. I had both Afib and SVT and the electrophysiologist determined that an other ablation attempt couldn’t be done. That has been reconfirmed several times over the last 20 years. I wasn’t able to work anymore so I went on social security disability and VA disability. The VA manages my Healthcare. In late 2016 I injured my back which caused extreme sciatica pain which totally stressed out my heart . I had my first electro cardio conversion on my birthday in January and at least one about every month after. My Fitbit recorded days that my heart rate was between 160 and 180 bpm for over 18 hours in a day and no less than 5 hours on any other day. The last conversation was at Christmas that year. The VA wanted to do a complete ablation and make me pacemaker dependent instead of assisting. Back surgery was out of the question because of my heart problems. In desperation I went to a neurologist to see if they could stop the pain. That was when I met another patient that told me about how taking CBD had really helped with the pain. I did some research about how to take it without causing interactions with my medications and ordered some from the same place and took half a dropper when I went to bed. I was aware that it could take weeks to take full effect so I wasn’t expecting any changes right away. It was taking me at least an hour to get out of bed in the morning because I couldn’t push my heart. I was warned about the damage that getting shocked can cause damage to the nerves. I lived like that for an entire year! I woke up 5 hours after taking the CBD and panicked because my heart wasn’t clicking away at 180 bpm. I went back to sleep and when I woke in the morning my heart was still in a normal rhythm! The conversions were always for atrial flutter and the afib was constant. That morning I thought I was in another world. I got straight up and moved around and my heart stayed in a normal rhythm the whole time! There wasn’t a lot of information on the web at the time but now even the NIH has published articles about it. My life has been totally different not worrying about standing up, walking too fast or anything else that used to make me stop in my tracks and sit down so that I’m not nocked off my feet from a defibrillator shock. The EP at the VA was astonished to see that my defibrillator had only recorded 2 several seconds episodes when it used to be in the hundreds and fill the memory. I hesitate telling other heart patients about it because they have to do some research on how to take it safely. I just know that it has turned my quality of life around! You should google “CBD treating arrhythmias, I think you might be surprised.
Thanks for the group connection.
David Hoover

Liked by robbie1956

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Hi, I am in several other Mayo groups – mainly the Hearing Loss one. I looked up this group because I received a teaser from the Harvard medical group which always tells you they are the best! 🙂 A specific question was noted in their attempt to get you to order their newsletter (which I won't do). The question they raise is of interest to me and I was hoping maybe you all could deal with it. It is: "Does eating eggs really pose a threat to cardiovascular health?". I love eggs but have very much limited my consumption of them thinking they could raise my cholesterol (which is well controlled by medication). I am wondering if anyone is in a position to enlighten me about this question?

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@barbb

Hi, I am in several other Mayo groups – mainly the Hearing Loss one. I looked up this group because I received a teaser from the Harvard medical group which always tells you they are the best! 🙂 A specific question was noted in their attempt to get you to order their newsletter (which I won't do). The question they raise is of interest to me and I was hoping maybe you all could deal with it. It is: "Does eating eggs really pose a threat to cardiovascular health?". I love eggs but have very much limited my consumption of them thinking they could raise my cholesterol (which is well controlled by medication). I am wondering if anyone is in a position to enlighten me about this question?

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@barbb Hi and what i was told is no no way you may think. The Cholesterol in eggs is not what causes hight cholesterol in the blood stream but they still recommend not going to excess. What causes high cholesterol in the blood is fat mostly the bad fats like saturated fat and especially trans fats so its recommended no more than 7 a week. Here is a link to better explain what Mayo thinks and what a dietitian told me is it fats and salt to watch out for mostly.
https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/expert-answers/cholesterol/faq-20058468
Hope that helps. I love eggs too and my numbers have been great since i watch the salt and fats. I usually eat eggs maybe every other to a couple of times a week so i can have 2-3 at one time like in an omelet has 3 eggs usually.
Have a Great and Blessed day

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