Need advice with heart issues

Posted by jadillow @jadillow, Apr 25, 2019

I have posted numerous times and everyone is so friendly and helpful. I have sinus bradycardia and for months I have had many days randomly filled with lightheadedness bouts and pains all in left side (arm, chest, hip, legs). Had stress and Ecco done 4 months ago and many ER visits saying heart was fine. I am now wearing an event monitor to keep checking things. Today for example my resting rate, sitting at my desk my normal job, was in the 40s. Most days it stays in 50s and today I have felt lightheaded air. Even at times feeling my limbs were cool.

I juts needs some advice. I’m 36 with a side and kids and I just want to make sure I am doing all I can to ensure I see them through the years and make sure something’s tragic doesn’t happen to me. Any advice or anything similar from anyone? Thanks a lot for the continued help.

Maybe it's a personality thing. When my Afib was wild…like all the time and meds were not working at all, I just carried on. It was kind of like that crazy expression, "It is what it is.". I was so busy with the kids and their activities and my business and getting meals on the table, that there was no time to worry. By nature, I am not a worrier. I actually enjoy things coming at me out of left field. For me life is fun.
As long as your condition is controlled and on top of that you are on blood thinners, there's nothing to worry about. You've done everything you can so there is no sense in perseverating about your condition. We are on this earth for such a short time, that we should be getting out and enjoying life and doing for others as much as we can. That's my philosophy. Look outward instead of inward. Embrace life! Maybe with a change in attitude, the wedding will be positive and fun. When I was at my all time worst, when the highest dose of beta blocker barely kept the beats even but that made me feels weak and tired, like I was 95 years old, I started to develop a psychological condition. My identity was that of 'a sick person'. I took on that role. I would ask my husband to do things for me that I could easily do before but that the drugs made me too tired to do. I became dependent which is that last thing I ever wanted. The way I had always thought of myself was as a strong, independent woman who could do anything I set my mind to. So this Afib changed me…or I let it change me. I think the condition is called something like 'victim syndrome'. Maybe a psychologist could help you deal with your anxiety and worry about your condition…which sounds well controlled.

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Wow. Powerful post by you both. Thanks so much. I just want to make sure I am doing everything I can to make sure it’s not the ticker and all tell me it’s fine but it’s hard. You guys are so encouraging. My 21 day monitor showed only sinus bradycardia

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@afrobin

Maybe it's a personality thing. When my Afib was wild…like all the time and meds were not working at all, I just carried on. It was kind of like that crazy expression, "It is what it is.". I was so busy with the kids and their activities and my business and getting meals on the table, that there was no time to worry. By nature, I am not a worrier. I actually enjoy things coming at me out of left field. For me life is fun.
As long as your condition is controlled and on top of that you are on blood thinners, there's nothing to worry about. You've done everything you can so there is no sense in perseverating about your condition. We are on this earth for such a short time, that we should be getting out and enjoying life and doing for others as much as we can. That's my philosophy. Look outward instead of inward. Embrace life! Maybe with a change in attitude, the wedding will be positive and fun. When I was at my all time worst, when the highest dose of beta blocker barely kept the beats even but that made me feels weak and tired, like I was 95 years old, I started to develop a psychological condition. My identity was that of 'a sick person'. I took on that role. I would ask my husband to do things for me that I could easily do before but that the drugs made me too tired to do. I became dependent which is that last thing I ever wanted. The way I had always thought of myself was as a strong, independent woman who could do anything I set my mind to. So this Afib changed me…or I let it change me. I think the condition is called something like 'victim syndrome'. Maybe a psychologist could help you deal with your anxiety and worry about your condition…which sounds well controlled.

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I can identify with that. That's how I feel. There is one woman here (I'd never met her before) that I've talked to that has afib, and she helped me cope when I first got diagnosed. She's older than I am, but has grandchildren also and like me, has to keep it together for their sake. But, I definitely fell into the helpless victim role and went inward. I still don't want to get out there and go to the group meetings that I used to go to because I have found so far that people expect me to be exactly who I was–very healthy. I told one of the group's leaders about my diagnosis and a couple hours she later asked me to do something (a small thing, but . . . ) for the group. It's like people don't know what it's like (it's just a heart condition after all, people get those all the time), and I get upset and withdraw. I need a little time to adjust to having a crazy, unpredictable heart and then I think I will be fine, but I hesitate to commit right now. Now, if I still had children at home and still worked, boy that would be tough. You CANNOT withdraw and go inside yourself. You can't take time to adjust and think about just you. Yeah, I don't know how I would handle that. I have to hand it to you ladies.

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I like your term, Catmom…'the helpless victim role'. That is exactly how I felt for most of the 2 years I suffered from barely controlled Afib. It was the drug, Sotalol at the highest dose possibly that made me feel weak and exhausted. Without it, of course, I would have been in constant Afib. The cardiologist said that the drug itself at such a high dose could cause 'heart block'. Strangely enough this didn't worry me…maybe because I was fairly young with kids still at home and figured it would never happen to me.
I only learned the valuable lesson of abandoning the 'helpless victim role' when I pulled myself up by the bootstraps and took charge of my own health. No more…'Yes, doctor. Whatever you say, doctor.". There was no internet then so I spent time in the library researching and reading books. According to a book on heart conditions in women, I first tried estrogen therapy….which I convinced my doctor to prescribe…although I was far from menopause. It worked! The very hard to control Afib stopped and I got (slowly) off the beta blocker. Not only did I feel well again, I felt like I had single handedly slayed a dragon. I felt empowered! It was an important life lesson. But the gynaecologist insisted I take progesterone with the estrogen because one must not take 'unopposed estrogen'. The Afib returned but it could be controlled with half the dose. Still, with that surge of success, I realized I needed to be stronger than I had ever been if I wanted to have my old self back with a renewed independence.
Still undeterred, I continued my research and read that aerobic exercise could strengthen and steady the heart. As you know, I joined a gym and went on the treadmill every day but Sunday for 35 minutes for 4 months. Inside a month, I was totally off the beta blockers. For the sake of anyone new reading this, the cardiologist said that it was not possible to 'cure' Afib and that I would soon be back on beta blockers. Here I am 24 years later at age 70…and but for a 2 day bout last year of blips during a period of stress, I have been fine. As you know, I avoid like the plague ANY and ALL stimulants. (coffee, tea, chocolate, alcohol, ephedrine in dental drugs or decongestants etc..).
If I could give anyone advice, it would be to beware of falling into the 'helpless victim' trap. It can feel like a safe and secure place, withdrawing from the world because one is too 'sick'. I urge anyone who feels the lure of helplessness, to fight against it; to look outward instead of inward; to adjust one's focus on others and what one can do to contribute to the world.
Because I learned to take charge of my Afib , I applied it to other areas of my life. As we age, we all have our crosses to bear. I happen to suffer from recurrent UTIs and have had to take many, many rounds of antibiotics which destroy the gut biome where 80% of the immune system resides. Again, through my own research, trial and error and visiting 4 specialists for their input and consulting with a naturopath, it has been an uphill battle, often discouraging, but I finally beat the UTIs.. Had I known at the beginning what I know now…
And again, as in my battle with Afib I am 'the master of my fate and captain of my soul'. Invictus! https://en.wikipedia.org/wiki/Invictus

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I just read your previous post again where you feel maybe put upon to be asked to help out at a group meeting. I urge you to see a psychologist to get your former, strong, healthy self back. No one will ever be 100% healthy but a lot of it is in one's attitude. It can be a wonderful life out here in the light. Don't feel ashamed or embarrassed to see a psychologist. And find one who actually gives you advice to follow. Last fall, I went to one 4 or 5 times because of a problem member of my husband's family and how to deal with her and the psychologist was a very down to earth, practical woman who gave me steps to follow. It's not a place to necessarily moan and then go home and lick one's wounds. She helped me to feel strong inside to confront the issue…just as you can learn to do in order to better handle your possible 'fear' of your condition and withdrawal from social situations. A psychologist can help you to embrace life again. You can do it, catmom!

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@afrobin

I like your term, Catmom…'the helpless victim role'. That is exactly how I felt for most of the 2 years I suffered from barely controlled Afib. It was the drug, Sotalol at the highest dose possibly that made me feel weak and exhausted. Without it, of course, I would have been in constant Afib. The cardiologist said that the drug itself at such a high dose could cause 'heart block'. Strangely enough this didn't worry me…maybe because I was fairly young with kids still at home and figured it would never happen to me.
I only learned the valuable lesson of abandoning the 'helpless victim role' when I pulled myself up by the bootstraps and took charge of my own health. No more…'Yes, doctor. Whatever you say, doctor.". There was no internet then so I spent time in the library researching and reading books. According to a book on heart conditions in women, I first tried estrogen therapy….which I convinced my doctor to prescribe…although I was far from menopause. It worked! The very hard to control Afib stopped and I got (slowly) off the beta blocker. Not only did I feel well again, I felt like I had single handedly slayed a dragon. I felt empowered! It was an important life lesson. But the gynaecologist insisted I take progesterone with the estrogen because one must not take 'unopposed estrogen'. The Afib returned but it could be controlled with half the dose. Still, with that surge of success, I realized I needed to be stronger than I had ever been if I wanted to have my old self back with a renewed independence.
Still undeterred, I continued my research and read that aerobic exercise could strengthen and steady the heart. As you know, I joined a gym and went on the treadmill every day but Sunday for 35 minutes for 4 months. Inside a month, I was totally off the beta blockers. For the sake of anyone new reading this, the cardiologist said that it was not possible to 'cure' Afib and that I would soon be back on beta blockers. Here I am 24 years later at age 70…and but for a 2 day bout last year of blips during a period of stress, I have been fine. As you know, I avoid like the plague ANY and ALL stimulants. (coffee, tea, chocolate, alcohol, ephedrine in dental drugs or decongestants etc..).
If I could give anyone advice, it would be to beware of falling into the 'helpless victim' trap. It can feel like a safe and secure place, withdrawing from the world because one is too 'sick'. I urge anyone who feels the lure of helplessness, to fight against it; to look outward instead of inward; to adjust one's focus on others and what one can do to contribute to the world.
Because I learned to take charge of my Afib , I applied it to other areas of my life. As we age, we all have our crosses to bear. I happen to suffer from recurrent UTIs and have had to take many, many rounds of antibiotics which destroy the gut biome where 80% of the immune system resides. Again, through my own research, trial and error and visiting 4 specialists for their input and consulting with a naturopath, it has been an uphill battle, often discouraging, but I finally beat the UTIs.. Had I known at the beginning what I know now…
And again, as in my battle with Afib I am 'the master of my fate and captain of my soul'. Invictus! https://en.wikipedia.org/wiki/Invictus

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I have found that exercise helps me too, in all kinds of ways, from steadying my heart rate to helping me feel better and lifting my mood.

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So my mother and sister have both been diagnosed with lupus over the last year and I was wondering how hereditary it is and if it’s related to my issues. I have had a random rash the past few weeks on my neck area and my doctor recommend a lupus panel. Now I’m curious is if this has been my issue the whole time

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My heart sometimes hurts really bad. This has been going on for the past 4-5 years (i am now 16.) The other day I was playing basketball, and I stay active and work out most days so moving around is not a rare occurrence, but my heart started beating insanely fast. I thought I was having a heart attack or that my heart was literally going to explode. It was extremely scary. I have asthma, but my breathing was fine; it was just my heart. I stopped and calmed down for a minute and it went back to normal, but I have been a lot more intensely active before and that has never happened. Could a doctor please answer this? It scares me that I may have a heart problem. When it first started back when I was 11-12, my mom took me to the doctor twice and they just said a muscle around my heart was growing, but they never did any tests and I never thought they were right about it but my mom belived them. Now at 16 and done growing, it still happens. Do any doctors know what this could be?

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@kenna0077

My heart sometimes hurts really bad. This has been going on for the past 4-5 years (i am now 16.) The other day I was playing basketball, and I stay active and work out most days so moving around is not a rare occurrence, but my heart started beating insanely fast. I thought I was having a heart attack or that my heart was literally going to explode. It was extremely scary. I have asthma, but my breathing was fine; it was just my heart. I stopped and calmed down for a minute and it went back to normal, but I have been a lot more intensely active before and that has never happened. Could a doctor please answer this? It scares me that I may have a heart problem. When it first started back when I was 11-12, my mom took me to the doctor twice and they just said a muscle around my heart was growing, but they never did any tests and I never thought they were right about it but my mom belived them. Now at 16 and done growing, it still happens. Do any doctors know what this could be?

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Hi kenna0077

I doubt that any doctor would proffer an opinion regarding your situation on this forum. You don't say whether the doctor (or doctors?) whom you saw was a specialist. If s/he wasn't, I think that the only way of getting an opinion of value one way or another, and of hopefully having your mind put at rest, is by persuading your mom to take you to a recommended cardiologist for a series of standard tests. These are not invasive, so you have no cause to worry about them. On occasion, asthma is misdiagnosed and the real problem is a quite different breathing disorder – a type of pulmonary hypertension related to heart disease; but such misdiagnoses are unlikely to be frequent these days, I would guess, and a good cardiologist would soon tell you whether a non-specialist was right or wrong in this regard. Irregularities in heart rate can be benign or, especially if they are frequent and episodes are sustained, can point to cardiac disease. Here are some examples to illustrate the above points: One of my sons has asthma but has been cleared by a paediatrician of having any heart defect. In childhood I received diagnoses of "growing pains" and "bronchial asthma" and was found, after some years, to have a malformed heart requiring surgery. My granddad had diagnoses of "exercise-induced asthma" and then "persistent asthma" but the true problem was the pulmonary hypertension that I have referred to above. All three examples are of people who are or were physically very active. So, like the asthma and the isolated case of a racing heart rate, your level of physical activity will not indicate whether or not you have a cardiac issue. Your age would suggest that you are still at school and at the point where learning unavoidably brings stress. You will have enough to worry about without additional anxieties concerning the health of your heart. Have a good, calm talk to your mom about the advantages of getting cardiac testing done. I wish you the very best outcome.

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