Things we live with...

While we're getting older, there are many things we learn to live with, for there's apparently very little to do against them.
We're getting used to some pains that may appear here and there and subside by themselves or with just a little care.
Our back, our knees, our stomach... The list is endless.

HR troubles are in another league, because they're still mysterious in many cases and may induce lots of stress, even when ours are known to be harmless (ectopics). We're struggling to live with them.

I'm an afibber (it's genetic), my weekly afib episodes are short (less than 2h) and stop spontaneously (I've been 4 times ablated), I may have some ectopics from time to time, mostly PACs.
My heart is normal, no HBP, no SA, no diabete, BMI=20, bicycling reasonably, always professionally active.

I'm 62. I've learnt to live with some stomach reflux (weak LES, but no heartburn), some osteoarthritis in my knees and left shoulder, some pain in my back when walking very slowly or standing still (I'm better avoiding to go shopping with my wife)... My friends and family are now used to see me drinking mostly water. They're sometimes joking about my heart, telling me I should forget about it.

Why am I struggling to live with my harmless HR troubles?

Is it because I never know wether I'll have afib or not; and if I have, wether it'll stop as soon as usually?
Is it because I know it can get worse and stop being harmless?
Or is it only because it's my heart and if it says "game over", it's really over?

It's so weird that you posted this message when you did, pompon.

I was coming here for more or less the same reasons.

I had another 'episode' in last night that's still sort of ongoing now and it's had me questioning myself, and my cardiologists. Have lots of other health issues but yesterday wasn't an awful day. Started to feel a bit off in the evening and when I got into bed the PACs started. Hard, forceful, knocking the breath out of me and making me slightly dizzy.

Woke up feeling woozy, tired (I usually am anyway) and had to call into work sick.

Same thing happened last Monday night, woke me up in the early hours with hard, pounding hart. But normal heart rate. Funnily enough, I had had a Zoom app with my cardiologist the night before and he'd assured me that my Zio patch showed nothing concerning and, coupled with a previous CT scan and Echo I'd had it was reassuring that - structurally - my heart was fine and the amount of ectopics I was having was probably less than a normal, non-afib sufferer. Only that I'm super sensitive to my heart doing anything but beating normally.

I added that they also don't feel dizzy, woozy, and breathless when they get these irregular beats either, but he asked if I wanted to be tried on beta blockers or blood thinners. He was steering me towards no, but I'm at a point where I'm feeling so desperate for any respite.

As you say, all the assurances in the world that 'this is my life now' is fine, but it's your heart - the most important organ in your body. It it decides to stop working, it is game over.

The cardiologist compared my heart rhythm to a knee injury. He said, if you get a sore knee, you come back from your run and rest it, you don't worry it'll lead to anything worse and then it passes. I kind of get it, but then your knee isn't the organ than keeps you alive, so it was a bit of a silly analogy.

Anyway, thanks for posting this, as it's exactly how I'm feeling right now. Bad enough having breathing issues, CFS/ME, but my heart waits til I'm down, then starts getting a few kicks in as well.

I would add too, that although the HR troubles may be 'harmless' it feels anything but when it's happening.



Edited 1 time(s). Last edit at 08/17/2020 06:39AM by DavrosT.

In the great scheme of things, afib is less of a burden than the three major issues (surgeries other than ablations) that have caused bumps in my road of life. I am 75 and always have been very active, but things that impact my active lifestyle are the things that concern me the most. Afib isn't one of them. I had afib for 11 years before my first ablation with more than 200 episodes. Other than missing a few workouts, my life was 99.9% normal. I never liked being in afib, but it was tolerable. Surgeries interrupted my life style, but only for a limited time, then back to normal.

Then, after 13 years of no afib, it came back again, with my second ablation in Jan. I still have the occasional short episode at night . but it doesn't stop me from my enjoying my normal active lifestyle. I work hard to stay in good physical shape so I can enjoy golf, hiking, windsurfing, scuba, skiing, swimming and some pickleball.

It's hard to minimize the afib, but there are plenty of other health issues that can create bigger problems.

Only people who have arrhythmia can ever understand. Our bodies intrinsically know how important the heart is. And so when it misfires over and over again, I really do think a sense of dread sets in as a warning to take it easy or get help. Even short episodes bring on a sense of doom that just lingers. It's nothing like having a bad knee or stomach ache or anything (as you well know). Your heart being in distress really can make you depressed. I feel it too. It may even be chemical. Its very hard to be happy when the heart isn't working properly. We're wired that way as a safety measure I think. Sucks.

But we also know many of these issues are harmless, or certainly not life threatening if managed properly. It's so hard to get there, and many of us really struggle with just letting them go and not worrying. I try not to tell other non sufferers about bad stretches or bad days because I hate to show weakness and I know they won't understand anyway. Like I've said it to my girlfriend in the past and she really does show sympathy but since it's invisible to her, I think she literally forgets within two minutes. LOL. So now I just deal with it. Is that healthy? Probably not. But it's nice to take comfort in a site like this where we "get you" Pompon. I certainly know where you're coming from.

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Ken
In the great scheme of things, afib is less of a burden than the three major issues (surgeries other than ablations) that have caused bumps in my road of life. I am 75 and always have been very active, but things that impact my active lifestyle are the things that concern me the most. Afib isn't one of them. I had afib for 11 years before my first ablation with more than 200 episodes. Other than missing a few workouts, my life was 99.9% normal. I never liked being in afib, but it was tolerable. Surgeries interrupted my life style, but only for a limited time, then back to normal.

Then, after 13 years of no afib, it came back again, with my second ablation in Jan. I still have the occasional short episode at night . but it doesn't stop me from my enjoying my normal active lifestyle. I work hard to stay in good physical shape so I can enjoy golf, hiking, windsurfing, scuba, skiing, swimming and some pickleball.

It's hard to minimize the afib, but there are plenty of other health issues that can create bigger problems.

Well, that's good for you Ken, but we're not all the same in that respect. As I said, some of us have a weird heightened awareness and so it can be like a chronic illness on it's own just having PACs or PVCs. Add that to any other health issues we may have too. You're obviously very lucky to have reached 75 and still be able to workout so frequently.

I am still slim, watch what I eat, barely pass 1600 calories a day and do as much exercise as my body allows - with CFS. 2.5 years ago, with afib, post-ablation, I was training for 5ks, I was going on energetic holidays, I was living life to the fullest and had great plans for the future.

Fast forward to now and those days feel like a distant memory. The fatigue issues aside, if I stand up a bit too fast my heart lurches. If I try to walk too fast, ectopics kick in. If I sleep at a funny angle in bed, I'm up all night with an irregular HR. Despite having a very healthy diet, it still doesn't please my heart 100% of the time and if I step out of line, it certainly lets me know.

We're all different, and as much as I'd love to just brush it off too, it's impossible in my current position. I'm sure pompon is in a similar position. I have health issues that cause me far greater problems, but the more frequent HR issues become, the more of a concern they become on a daily basis. Whether or not we can do anything about them.

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keeferbdeefer
Only people who have arrhythmia can ever understand. Our bodies intrinsically know how important the heart is. And so when it misfires over and over again, I really do think a sense of dread sets in as a warning to take it easy or get help. Even short episodes bring on a sense of doom that just lingers. It's nothing like having a bad knee or stomach ache or anything (as you well know). Your heart being in distress really can make you depressed. I feel it too. It may even be chemical. Its very hard to be happy when the heart isn't working properly. We're wired that way as a safety measure I think. Sucks.

But we also know many of these issues are harmless, or certainly not life threatening if managed properly. It's so hard to get there, and many of us really struggle with just letting them go and not worrying. I try not to tell other non sufferers about bad stretches or bad days because I hate to show weakness and I know they won't understand anyway. Like I've said it to my girlfriend in the past and she really does show sympathy but since it's invisible to her, I think she literally forgets within two minutes. LOL. So now I just deal with it. Is that healthy? Probably not. But it's nice to take comfort in a site like this where we "get you" Pompon. I certainly know where you're coming from.

I know what you mean. You're told constantly that they're harmless, but it doesn't stop them being a big worry when they kick in.

My - former - wife used to get annoyed with me for worrying when I was having a rough period with ectopics. She couldn't understand why I was so worried. As far as she was concerned, because the doctor had told me that I should get 5-10 years afib free after my successful ablation, I should go through life without a care in the world. I only wished she could experience it sometimes.

Like you say, only those who have these sorts of arrythmia can truly understand how it feels. Whether life-threatening or not, is irrelevant. It's about QOL too.

I originally described my AF as chihuahua and not pit bull but after a year of persistent AF - you really want to kick that dog as hard as you can.

The hardest thing about persistent AF is that it's always in the way. When it was para - it was the doom and fear when I felt an episode coming on.

It's just nagging now and I am ready for my ablation. Hoping it's one and done.

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keeferbdeefer
Only people who have arrhythmia can ever understand. Our bodies intrinsically know how important the heart is. And so when it misfires over and over again, I really do think a sense of dread sets in as a warning to take it easy or get help. Even short episodes bring on a sense of doom that just lingers. It's nothing like having a bad knee or stomach ache or anything (as you well know). Your heart being in distress really can make you depressed. I feel it too. It may even be chemical. Its very hard to be happy when the heart isn't working properly. We're wired that way as a safety measure I think. Sucks.

But we also know many of these issues are harmless, or certainly not life threatening if managed properly. It's so hard to get there, and many of us really struggle with just letting them go and not worrying. I try not to tell other non sufferers about bad stretches or bad days because I hate to show weakness and I know they won't understand anyway. Like I've said it to my girlfriend in the past and she really does show sympathy but since it's invisible to her, I think she literally forgets within two minutes. LOL. So now I just deal with it. Is that healthy? Probably not. But it's nice to take comfort in a site like this where we "get you" Pompon. I certainly know where you're coming from.

Great answer! I'm trying not worrying too much about my heart, and it's not easy. It's easier saying "I'm fine, it's just some ectopics or afib from time to time and it's harmless" to people asking "how are you with your heart?", than being convinced it's true.

Hang in there Pompon, I can hear your frustration. You are not alone... Jeff

Hang in there Pompon. I know it can be very frustrating. I have a lot of experience with afib and have made a lot of progress. If I can be of help by phone feel free to reach out to me and we can make arrangements. Best, Jeff

Great discussion! For the AF battled harden veterans, we live, each in our own way, with the fact that there is no cure (Natale's words not mine), and we are a heartbeat away from a another battle.

Thanks a lot everyone for your kind answers.

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keeferbdeefer
Only people who have arrhythmia can ever understand. Our bodies intrinsically know how important the heart is. And so when it misfires over and over again, I really do think a sense of dread sets in as a warning to take it easy or get help. Even short episodes bring on a sense of doom that just lingers. It's nothing like having a bad knee or stomach ache or anything (as you well know). Your heart being in distress really can make you depressed. I feel it too. It may even be chemical. Its very hard to be happy when the heart isn't working properly. We're wired that way as a safety measure I think. Sucks.

But we also know many of these issues are harmless, or certainly not life threatening if managed properly. It's so hard to get there, and many of us really struggle with just letting them go and not worrying. I try not to tell other non sufferers about bad stretches or bad days because I hate to show weakness and I know they won't understand anyway. Like I've said it to my girlfriend in the past and she really does show sympathy but since it's invisible to her, I think she literally forgets within two minutes. LOL. So now I just deal with it. Is that healthy? Probably not. But it's nice to take comfort in a site like this where we "get you" Pompon. I certainly know where you're coming from.

Only people who have ? can ever understand. I think you can substitute the ? with any number of conditions/diseases. Some with as many of more potentially fatal or life altering ramifications as afib. Each is personal to it’s owner. I think that’s what’s so great about this forum and others like it. They’re not only a place to get good information and advice but also some understanding, empathy, or even a virtual shoulder to cry on. Wanting to know that “we are not alone” is not just unique to cosmology. With that I hope all who are struggling today will have a better tomorrow.

Also, again, a sincere thanks to all those who give so much of their time to make this place run and stay in rhythm.

Earlier, I posted how afib impacted my life and how I try to manage it. I was not suggesting that we all are impacted the same way, just that afib's impact on my lifestyle was not on par with many of the other physical issues that frequently hit those of use that part of the older population.

I have a female friend, upper seventies with afib. She is sedentary, but mobile with a walker, overweight, generally healthy, but never knows when she is in afib. So for her, afib has not impacted her "lifestyle" whatsoever. It's a weird affliction that has a 1000 different stories.

DavrosT said: You're obviously very lucky to have reached 75 and still be able to workout so frequently.

My father was a hiker and climber, that never stopped walking until he died in his sleep at age 97. He hiked to the bottom of the Grand Canyon and back out with my wife and I at age 88. If any of you are familiar with "Angles Landing" in Zion National Park, he climbed it at age 91 scrambling up very steep rocks, holding on to chains where the slope approached 75 degrees. His California drivers license was renewed at age 95, but a year later, he was having some issue finding his way home, so my brother took away his car keys. Up until that point, he would drive daily to a small lake near his home that had a paved 1.5 mile flat trail around it. He would make a lap or two with his three wheeled walker every day. He is my mentor and I plan to beat his 97 year lifespan, simply by staying as active as possible, for as long as possible. We always said: "Use it or lose it".

Ken - all -

We often hear these stories of fathers and grandparents, cut from a better cloth and broke the mold stories. The thing is those people weren't exposed to the crap we were for so many formative years. If I had asked my grandfather if he ever had McDonalds or a Coke, I might have heard, "tried them once, didn't like it" Not - "I had one or 6 every day of my life"

I was a diet soda drinker - recall getting Tab in the 70s, then Diet Dr Pepper in 80s, Diet Coke in the 90s and Coke zero until I gave up soda. That's 40 years of daily diet soda. Surely part of many health problems I used to have before getting woke and smart about diet. But the effects of such carelessness and stupidity (there is no free lunch) of drinking diet soda so I could have those other carby treats most assuredly brought me to this forum.

Most of my life and diet doesn't resemble in any way that of my fathers (other than where I led him astray - introduced him to bagels) and doesn't reflect what my grandparents ate.

There are lots of more serious and life threatening health issues than afib. I fully agree with that.
And, yes, for most of them, you don't know or can't really understand when it's not YOUR problem.

I'm used to tell people asking about my heart that what I have is not dangerous, that I have no real pain. Just some discomfort. Since having been ablated, my afib episodes are shorter and my symptoms lighter. I've stopped taking meds. Sincerely, I should not worry.

They all know I should not worry, for it's what I've told them and they believe me.
The only one still to convince of that is myself.

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walt

Only people who have arrhythmia can ever understand. Our bodies intrinsically know how important the heart is. And so when it misfires over and over again, I really do think a sense of dread sets in as a warning to take it easy or get help. Even short episodes bring on a sense of doom that just lingers. It's nothing like having a bad knee or stomach ache or anything (as you well know). Your heart being in distress really can make you depressed. I feel it too. It may even be chemical. Its very hard to be happy when the heart isn't working properly. We're wired that way as a safety measure I think. Sucks.

But we also know many of these issues are harmless, or certainly not life threatening if managed properly. It's so hard to get there, and many of us really struggle with just letting them go and not worrying. I try not to tell other non sufferers about bad stretches or bad days because I hate to show weakness and I know they won't understand anyway. Like I've said it to my girlfriend in the past and she really does show sympathy but since it's invisible to her, I think she literally forgets within two minutes. LOL. So now I just deal with it. Is that healthy? Probably not. But it's nice to take comfort in a site like this where we "get you" Pompon. I certainly know where you're coming from.


Only people who have ? can ever understand. I think you can substitute the ? with any number of conditions/diseases. Some with as many of more potentially fatal or life altering ramifications as afib. Each is personal to it’s owner. I think that’s what’s so great about this forum and others like it. They’re not only a place to get good information and advice but also some understanding, empathy, or even a virtual shoulder to cry on. Wanting to know that “we are not alone” is not just unique to cosmology. With that I hope all who are struggling today will have a better tomorrow.

Also, again, a sincere thanks to all those who give so much of their time to make this place run and stay in rhythm.

I do agree that other conditions can only be fully appreciated by someone whose experienced them. But I also think of my own bout with migraines as a younger person into my late teens. I'd get them a couple times a week; completely debilitating and would even make me puke. I can say, however, that even that pain did not make me feel like I was going to die. Afib and flutters do that. A migraine could make me feel like I WANT to die, but not like I actually would. I really believe heart conditions are in a different league. Granted (luckily) I haven't been afflicted with everything under the sun, so this is a study of one.

People have NO idea what we go through....I guess unless they experience there’s just no way to completely understand. I think because am fib episode itself does not actually kill you, (short of a stroke that is)... people naturally conclude, “what’s the big deal?”.

Plenty of us here that DO understand what you,re going through, and share your pain almost daily. We understand, hang in there... it HAS helped me to really appreciate the good days....to really value a quality, afib free event or experience....when they do happen and not take it for granted.

Embrace the small victories as best you can.

To me AFIB was severe mental torture apart from the fact that it physically stopped me in my tracks. I could go on for ages but I think this saying I picked up on this forum many years ago sums it all up for me.........which illness would make you think 'I am not frightened of dying of this, I am frightened of living with it'. Obviously it all depends on your individual AFIB burden.
P.S. I have had 5 ablations, 1 at Escorts Hospital in India and 4 in Bordeaux. Been AFIB free since 2010 but did have a Atrial Flutter break out just over a year ago that was cardioverted?? and been free of arrhythmia ever since.

Barry G.