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Avatar universal

Why doesn't all the reassurance in the world make me feel 'okay' about arrhythmias?

So, I've just gone through 2 months of extensive testing by some of the best in the medical world, told that I am okay, these are nothing to worry about, and I still find myself feeling really uncomfortable with these skips and blips.  I have gotten several today and feel really ill at ease still.

Does it take awhile to 'get used' to these and does the fear eventually go away? Or is this my life - living in fear of these - forever?  I'm worried that I won't ever get used to these or not be afraid of them.  My husband keeps telling me, hey, you got good news, you should be relieved!  But I cannot.  get.  used.  to.  these.  In a weird way, as great as it is that these are benign, I think I was hoping that they were going to do something to 'fix' them so I wouldn't get them anymore.  

Any thoughts on this?
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Avatar universal
I can totally relate. I started with these so called benign beats at the age of 26 and I'll be 47 in a few weeks. I do all the right things..take my tenormin, stay away from caffeine etc. Do I stay calm when it happens?! heck no :( I still get quite upset when it happens. After testing and I'm told everything is fine I feel real good about stuff and calm down till the next episode. But now when I do get an episode I keep reminding myself of everything the doc has always told me and take just a little bit more tenormin and of course it does calm down. I wish I knew the answer as to how NOT to get upset about it but I sure haven't quite learned it yet but I am a just little better than I used to be when it happens. You are certainly not alone with this.....
Chattychicky
Helpful - 0
267401 tn?1251852496
I think part of the issue might be, by the time they are noticed by you, the heart cells that are misfiring are already there.  Short of ablating them, there isn't a lot you can do to get rid of those cells.  Kinda like having a pinky finger.  Short of removing it, it's going to be there.  

Also, when it comes to modern medicine, I really think you can only call the last 30-40 years truly "modern", where hi-tech gadgets are used to treat difficult problems and diseases.  So to me, it's not much of a surprise that the medical community may not know why these happen.  What's more, because they haven't figured out a way to cure many of the problems that really are life threatening, they would probably prefer their time and effort is spent there, instead of on a problem that most people live healthy, long lives with.  Not to belittle your complaints - I have 'em too and I don't like 'em, either.  The PVC's don't usually bother me unless I'm up around 5,000+ for a day - I guess I've had time to get used to them.

For me, I think that after knowing that my heart was in fine shape, I'd prefer to have some sort of surgical procedure that would prevent me from feeling the odd rhythms.  Nervectomy or something.  :)  I found out recently that my father likely had a-fib for a decade or more before he even realized it.  Me, on the other hand, I'm pretty sure I knew the moment of my very first irregular heartbeat.  Stupid me, pounded a great big Mountain Dew before doing some heavy cardio and lifting (I wanted lots of energy while working out).  Read some muscle magazine or something about people doing that.  How dumb.  

Anyway, the next time you're out at the grocery store, look at the people you pass and remember that as many as half of them are having the same symptoms as you.  Some may not feel it, but many do.  

Hope that helps a little.
Helpful - 0
739242 tn?1234217827
Thank you all for your reassurances. I saw the cardiologist today and he seemed slightly impatient with me for worrying so much. He kept saying my heart was "normal" and that I should start taking beta blockers so that I wouldn't notice the PACs/PVCs so much. I reminded him I had asthma and he turned red in the face. I think I need a second opinion?

The worst thing today was sitting across the table from the doctor and saying to him, "You mean I'm going to have these for the rest of my life?" and him nodding and telling me, "Most likely, yes."

What I want to know is: What can't they figure out what CAUSES these things? We can send men to the moon. We can build rovers that get to Mars and take soil samples to analyze. But we can't figure out why our hearts are electrically all out of whack? Man, this frustrates me!
Helpful - 0
267401 tn?1251852496
I know I sound like a broken record on the tea, but you might try some.  

But more importantly, in the spirit of Tony Robbins, having a "trigger" that reminds you to relax might be as powerful.  The first several times I drank that lemon balm tea I was mindful that I needed to try to relax.  Pretty soon the drinking of the tea was tied to me mentally relaxing.  

And that might be the biggest reason why that tea works for me.

Maybe for you it'd be a hot shower at the end of the day, or a brisk walk.  
Helpful - 0
Avatar universal
Thanks all.  I've been thinking - I need to chill.  I know I tend to be anxious, but I don't think I ever fully understood how much being chronically anxious affects how my body works.  Especially because I've had heart surgery, I assume that these arrhythmia are due to the surgery.  Doctors assure me they are not, but that is hard for me to wrap my head around.  I mean, they've gone in there and goofed around - had my freaking heart stopped and out of my chest and were goofing around with it in their hands - so if anything is 'wrong' with my heart it's gotta be due to that.

But I underestimate how much my anxiety affects me.  These started up after a couple of years after my panic attacks started.   And the arrhythmia make the anxiety worse because I seemingly don't have any control over them.  Anxious people don't like bad things that happen out of their control.  I've been trying to figure this out for awhile now - what these arrhytmias are and why they happen, what triggers them, what not to eat, when they happen, how often.  Maybe I need to focus on trying to relax first and foremost.  If I do that, maybe these arrhythmia will calm down some.   So that's my goal for now.  To find some sort of way to deal with life's ups and downs and stupid **** like these arrhythmia in a more calm way.  All I can do is take care of myself, beyond that, I have no control.  
Helpful - 0
Avatar universal
Hi,
I am in the same boat as you. When the docs tell me not to worry, I feel like asking them whether they have experienced it! I think most docs haven't- I haven't yet had the guts to ask! The fear has not gone away for me despite having it for more than ten years  now- since neither I nor the docs have figured out the cause yet, it is the unpredictable nature of the episodes that really scare me. I am yet to figure out how to get used to it.
All the best.
Helpful - 0
Avatar universal
Hi there, I really feel for you because I can see that the **** skips are really getting to you and ruining you whole life. Please try to snap out of that mindset; these things WILL NOT kill you. Of course you'll see your son grow up. I've had them all my life and by now I'm watching my grandchildren grow up!! Lately I've been going through a really rough patch -I had to laugh at your description:" these things jumping around under my sternum like an injured frog", that's pretty accurate, you know. But somehow I've learned not to pay so much attention to them and they eventually peter out. For what it's worth, I have recently started a regimen of supplements: 400 mg chelated magnesium, 100 CoQ10 and 1000 mg L-Carnitine fumarate and I already can feel a difference. Maybe you would like to give them a try. It's the formula of an integrative cardiologist I found on the web; he claims it helps his patients enormously.
Cheer up and fight, girl, it's not the end of the world.
Helpful - 0
Avatar universal
just another post from someone that has the same experience, 1000's/day for several days straight.  i hate the feeling of being held hostage to them.  right now they are in remission, but who knows when they will come back.  i just enjoy each day without them as a gift.  my triggers are stress, lack of sleep, and perhaps eating sugary food.  
Helpful - 0
730053 tn?1234534651
Thanks for the tea suggestion.  It just sounds relaxing.  That can't be a bad thing in my present state of mind.
Helpful - 0
267401 tn?1251852496
Funny - I never get really nervous about having them in church.  I think I figure that if it's my time to go, that's probably the best spot, or if there's a miracle to happen, again, that's probably the best spot.  So in general, church tends to lessen the PVC load for me.

To missalissa, I can sympathize.  I've had a string of health concerns over the last few months and have had a few late nights, staring through the crack in the blinds, out at the stars, thinking how if I was gone I wouldn't need to worry about these things anymore. ***** to feel that way.  

And I can so relate to those who are checking their heart beat all the time.  I have my non-chalant poses where I put my fingers at my temples and casually glance at my watch...  Though I don't think I'm fooling my wife.

When I was in my stretch of having 6 months of non-stop PVC's, I got to a point where I didn't care if I was going to drop dead - I was going to keep doing what I was doing, and if it was my time, it was my time.  A week or two after that they started to fade.  That was in 2006.  In 2007 and 2008 combined I've had what I would consider 46 "bad" days (where PVC's would number in the thousands).   I track them on a spreadsheet so I can try to figure out my triggers, which for me are more related to stress.

So I think it's possible to have long stretches where you have none, or at least so few that you hardly notice.  

For those who are interested, I would recommend trying Lemon Balm Tea.  When I drink it I try to also remember WHY I'm drinking it, and make a conscious effort to step back, slow down and relax.  The tea is kind of a crutch for me now, but I swear the stuff works for me.  If you search at Amazon, I buy the organic version of it from Celebration Herbals.
Helpful - 0
Avatar universal
I'm sorry to hear you are in the same boat.  I agree that it is very ard to live life as 'normal' because these things really play mind games with me and distract me so much.  Like Jodie said, she went to church but didn't hear a thing the entire time she was there because of these skips and jumps and runs of arrhythmia going on.  I can''t count how many times I've missed conversations, movies, experiences because I'm so focused on what's going on with my body and my heart.  It takes all my energy just to appear 'normal' and sit in one spot without looking concerned.   And people notice - probably from the look on my face.  People will sometimes ask, 'Are you okay?' I always say 'yes' but I'm really NOT okay.  It's so hard to act normal when this is going on.

My husband and I want to have a baby more than anything, and my biological clock is ticking now that I'm 34.  But I have to admit, I'm terrifed to be pregnant.  I'm sure these will get worse with pregnancy, and I don't know how I'll keep my cool or get through that.  9 mos is a long time.   I wish the stork really did bring babies.  LOL.
Helpful - 0
739242 tn?1234217827
I am with you guys. I'm sort of new here, and at first I thought it was all better because they went away for a couple of days. Nope. They're back.

I find myself crying constantly when I have these things. I have a seven-year-old son, and I don't want to die without seeing him grow up. I am the primary breadwinner in our family, and the stress of doing my job with these things jumping around under my sternum like an injured frog is really getting to me.

Some nights, when I lie awake, waiting to make sure my heart won't stop for good, I feel like it would be easier just to die. If I didn't have a child, I do wonder if I wouldn't take that way out, rather than live like this. It's no way to live.

I fear flying in airplanes, and to me, living with PVCs is a lot like being in an airplane that's going down. There is nothing you can do about it, the end is coming. I can't stand it. I feel like I'm losing my mind.

My echo came back with mildly dialted atrium and three valves with "trace regurgitation". My doctor wrote "Good news! All Normal!" at the top of the report. No, I wanted to shout, all is NOT normal. My atrium is enlarged, my valves are leaking, and my heart keeps throwing out extra beats and struggling in my chest.

I can't live like this. I want an ablation, but I've read a lot of posts here that say ablations don't work. Has anyone here actually had a successful ablation? OR do they all run from this board once they're better?

I find myself withdrawing from my family life, because I am so depressed and I don't want to harm my husband and son by having them see me like this. I have never been this miserable in all my life.
Helpful - 0
Avatar universal
Thanks guys.  Yes, I have had a few months without much going on, and life started getting 'back to normal' and then one day BAM!  I'm hit with a doozy and I become fearful again.  I have this weird issue about having them in public.  I don't know why, but they are 10 times scarier when they happen in public for some reason?  I feel like, I don't know, I'm going to pass out and cause a scene or something.  Or maybe it's because it's hard to 'act normal' when this is going on.  It's not like you can say 'oh, my heart is going crazy inside my chest' to everyone at the dinner table.  Someone is likely to call 911!  
Yesterday was one of the worst days I've had.  I got several longer runs.  The worst was when I lay down in bed last night to go to sleep.  I got a crazy run and popped right out of bed!  My husband keeps reminding me of what the doctors said and not to worry, but maybe people that don't get these don't understand how hard it is to be comfortable with such a scary, uncomfortable feeling.  Normally I only get one or two long runs a month.  So to have several in one day is unprecedented for me. Jodie - sounds like we both had a bad day yesterday.  Hope today is better for us both.

Maybe I'm really anxious - just from all of the worrying and waiting at the doctor's office, and the false bad news I received (and then had to wait another week).  I feel wiped out from it all.  And, honestly, not much better for having had it checked out.  No medication, no 'fixing' of the problem.  Kinda back to square one, in a way.  
Helpful - 0
221122 tn?1323011265
I think we are all on the same page.  Good news....yes, after a bad run of a few days/weeks/months, you just get tired of being afraid....that is when they stop.  After a few days/weeks/ yes even months, of hardly anything, you think you are on cloud nine and that you'll never let those things bother you again.  Then they come back and it is just like getting used to them all over again.  I have cancelled vacations because of bad runs.  I am leaving on Friday for Disney and after not having hardly anything for a long time, they are back.  What does that tell you?  I have had them for 34 years and I will say that the fear NEVER truly goes away.  This board helps me a great deal.  They feel horrible.  Someone wrote a post on here a while back that gave me hope...She explained it so nicely.  I wish I could remember and bump it.
Helpful - 0
730053 tn?1234534651
Go ahead and ask for the EP study and possible ablation.  If the the "beats" have been determined to be benign, good news; but, if they are affecting your quality of life and ablation is possible, you might consider it.  I know I am for myself.
Helpful - 0
335873 tn?1264913469
I so very there, too. I started having these 6 years ago. My cardiologist assured me that they are benign and will "not kill me". Yesterday I had no palpitations whatsoever--a perfect day. I'm thinking as I go to bed that I might be on a roll, where I with luck, have several days in normal rhythm,  which happens from time-to-time, but no.

Today was a typical so-so day, where in the morning I have three minutes on, five minutes off, and so on until mid afternoon when they become less frequent, with occasional blips lasting for under a minute every hour or so. At least they weren't pounding hard for an hour or more. Those are the ones that scare me now. The soft intermittent ones don't freak me out that much any more.

In truth, when I have several really bad days in a row, I get the attitude that I don't care if I have a cardiac event (most likely stroke) from them. As long as it's massive and does kill me, rather than being disabled and a burden to my family.

But as this continues on, it seems that the prognosis is a long life of torment from this situation. Hopefully, easy 100% effective ablation technology will become available.
Helpful - 0
363281 tn?1643235611
I know the feeling all too well. I thought that after I had my echo and was told all was fine I would stop worrying, but, nope, not me. Every little "flutter" causes me big-time panic and that of course can lead to more of the horrid things.

I have a had a few days when I have been free of them, but, when they hit again, I am then extra afraid. I think the less you have them, the more they scare ya when they happen.

I know what you mean also about sitting in church having them. Sadly, I do not go anymore because I am afraid I will have some and get real scared and have to leave, they DO control my life, I am tired of it, yet, I cannot seem to control my fears.
Helpful - 0
177337 tn?1310059899
Boy do I ever know what you are talking about.  I had a pretty good day yesterday.  Actually I had a great night with some friends singing karaoke and dancing.
Today, I got up and went to church.  I sat down and WHAM they were happening every few beats for the ENTIRE HOUR.  I don't even remember anything that was said because I was to busy feeling my pulse and scaring myself to death.  I felt every one and they all felt different.  They were so hard that my left boob would jerk.  UGHHHHH
I really thought I was going to end up going to the ER.  My husband convinced me to just call the doctor.  So I got home, called the doctor (who of course wasn't my doctor but another in the group).  He called me back and told me not to worry.  He also told me to double my atenol  UGH I hate taking drugs.  I only take 1/4 of the 25mg so that isn't much I know but it was working for years.  Now I'm going to try to take 1/2 and see what happens.  Plus I started my vitamins.  I plan to call the doctor tomorrow and I will probably insist once more on another holter for piece of mind.  (that like you, will last about 1 week) lol

I felt better by around 4pm so I made myself go workout and I haven't felt anything start up again....yet.....
This episode in church was one of the worst I have ever experienced.  I kept thinking "what if it doesn't go back to a normal rythym".  I have a splitting headache as I type this.  
We need to stop worrying.  Let's help eachother!
Jodie
Helpful - 0
Avatar universal
I know exactly what you mean. It has taken me quite a while to come to terms with the fact that I have ectopics and that there probably isn't much to be done about them. They seem to have a life of their own as somebody remarked on this forum. Sometimes avoiding triggers seems to help (caffeine. alcohol, sugars, carbohydrates). Avoiding stress and anxiety is more of a challenge since the whole thing becomes a self reinforcing vicious circle (you become anxious because of the PACs or PVCs and these, in turn, make you anxious). Personally I find that meditation and something called visual imagery has helped me cope with them in the sense that I'm not freaked out anymore by them. The important thing is that you have a healthy heart (sometimes difficult to believe, right?) so you should really really try to stop worrying about them. Hang in there and enjoy your life because it is way too short...
Helpful - 0
664977 tn?1234640735
I'm sorry you are being bothered with those worrisome beats. If you are genuinely confident in the care you received, try to find comfort that the test results showed nothing of concern. You may have to give yourself some time to wrap your brain around that, given you have been so conscious of every beat and having waited upto abd through 2 months of testing.
I think it usually takes little conscious effort to accept something negative. It is more of a challenge and takes concerted effort to believe in the positive, especially when you have something tangible, like your skips and blips, to attract your attention.
Take a deep breath! Celebrate and enjoy your life. In the event they should get worse,
or interfere with things you want to do, you can always retest then.
Recognize you need to release all the stress you have built up leading up to the results and chose something (dancing, yoga, a great comedy-laughing is great!, hiking, creating) that works for you and have fun.  And keep taking those deep breaths!

Congratulations! Make the most of those great results!  
Helpful - 0
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