Kind of at a loss

Hi. I got my PM in January of this year after going to the doctor for what he told me were palpitations-"nothing to worry about but we’ll do some tests to put your mind at ease"-that turned out to be heart block. I feel kind of adrift here because I thought my symptoms would go away after the surgery. When I went to my first checkup in Feb, I described my symptoms and they told me that women just have palpitations oh yeah "did they tell you you have atrial fib?" Well, no. The doctor asked if I had questions...well, I’m forty one years old and haven’t been to a doctor since I was a kid because I’m healthy, so my question
was what?
Sorry, I needed to get that off my chest, it was squishing my PM. LOL
My question is this: sometimes when I have palpitations it feels like my heart is swelling up in my chest and then pounding very hard for 5-6 beats. This causes mild shortness of breath. Am I feeling the afib? And should I be worried? I’m not on any meds, and at my phone download last week they told me my device is functioning appropriately. I feel like I was just cut loose.

I’m glad I found you guys. Thanks

7 Comments

Welcome...

by chip - 2009-06-02 05:06:08

Hello and welcome to the club! You are now a member of an elite group.

Our pacemakers came as a surprise to a lot of us here. I think you’ll find that many folks were just as shocked as you when they ended up wired so you’re not alone there.

I can only answer your question from my experience - when I’m in a-fib I don’t feel it much at all.
Quite the opposite for palpitations; for me they are just as you describe but it is tolerable to me.

As far as being worried, from what you have described here I wouldn’t be to concerned and it sounds as if your doctor isn’t either. From what I understand it depends on the duration and severity of the a-fib episodes whether or not you are medicated for it. Believe me the fewer heart drugs you take the better off you are!

I am more concerned that you feel “cut loose”. If you aren’t happy with the treatment you’re getting from your doctor don’t be afraid to see someone else. If your symptoms are bothering you or affecting your life you need to get them treated. What is no big deal to one person affects another a great deal. So if your current doctor brushes it off; don’t put up with it and go see someone else who will care.

I would agree with Tracey that your setting need tweaked and it sometimes does take a few trips to get it right.. If your current doctor can’t or won’t spend the time it takes to do it seek out another that will!

Remember this site has a wealth of great real life information. Don’t be shy if you have a question or just simply want to vent.

Good luck & God Bless

settings

by Tracey_E - 2009-06-02 05:06:29

I'm sorry you're not feeling better yet! You are correct, if the symptoms you had before were from a heart block, then once you get the pm and it is adjusted properly, you should be without symptoms. We have one of the easiest things to fix with a pm because the pm is simply completing a broken circuit, our hearts work just fine other than that one little electrical signal that gets blocked.

Did they do a Holter test, where you wear a monitor for a period of time? That's the best way to see what you're doing. A pm records a lot but not everything our hearts do, only when the pm is working.

Palpitations could be svt's or pvc's. Both are annoying but harmless, and the pm can't do anything about them. Svt is when the atria suddenly speeds up a bit then drops back to normal. Pvc is a premature ventricular contraction, like a half beat the way I understand it (sorry, I don't get them so I don't know much about them, definition should be under FAQ's)

Afib can be a tricky sucker. You can usually feel it but not always. Since people don't fibrillate all the time, the dr will only catch it if you happen to be doing it in the office or on a holter, or if you are getting symptoms. So, if you don't feel it and you don't happen to do it when you're in the office exactly when they're listening to your heart, it's very possible to go undiagnosed. A pm cannot help afib, it's usually treated with beta blockers, which slow down your hr. A pm can regulate an irregular hr, speed up a slow hr, but it can't slow down a fast hr.

You can be perfectly healthy and suddenly discover you have a block. Block is a bit of a misnomer. It's an electrical signal blocked, not a blocked artery, so all the eating right and exercising in the world cannot prevent it. The most common way to get it is an infection. I was born with mine. If you have an intermittent block and no symptoms, it can also be tricky to catch and go undiagnosed for years.

Just because the phone check was ok and the device is functioning properly doesn't necessarily mean the settings are the ones you need to feel great. It can take a bit of fine tuning to get the settings tweaked to what we need, the factory standards they send us home with are meant for older sedentary patients- your more typical pm patient. We who are young and active make them work harder! Keep a log of when you feel bad, write down the time and tell them about it on your next check.

Here's what you might be feeling.... (pardon my rambling, I type as it pops into my head LOL)... with an av block, your atria beats normally and sets your pace. The ventricles- what controls what we feel as our pulse- doesn't get the message to keep up. The pm steps in and bridges the gap- it tells the ventricle to beat when the atria does. If you fibrillate or have svt's, the atria is likely going higher than the pm is programmed to make the ventricles keep up and your heart isn't getting the message on its own (that's the block). So for example, if your atria jumps up to 180 and your pm maxes out at 130, you will feel short of breath until your atrial rate drops and your heart is once again in sync. They should be able to adjust your settings so you don't feel it as much. If the beats are fast but regular, it's harmless. If the beats are fibrillation, you can be at risk for stroke so they try to slow the heart down with beta blockers.

Please don't be discouraged if it take a few tries to get it right, they like to do the changes in small increments rather than do something drastic all at once. i.e. trial and error! There is no one setting that's best for everyone so it can take some experimentation to get you feeling your old self.

Also, ask for a copy of the before and after report, a few of the guys here can tell you what all the gibberish means.

Problems

by SMITTY - 2009-06-02 06:06:06

Hello Ecf2xtreme,

Welcome to the Pacemaker Club,

Below is part of an article on A-Fib I got off the Internet. Based on what this says, you could very well be having A-Fib, but I would suggest that you get that word come your doctor. But maybe this info will help you prepare some questions for him. Especially if this problem does not correct itself in a few days, or gets worse.

One more word on a pet peeve of mine and that is what we are told about our pacemakers. You said "they told me my device is functioning appropriately." I don't know how many of us have gotten that same message in those exact words or some very similar over the years. It seems to be the first line of defense used by doctors, nurses and technicians. My feeling is that they are trying to buy time while they hope the problem goes away. So I say, accept those reports at face value and if you continue to have problems continue to jerk the doctor's chain. And don't hesitate to do it just because you were told "everything is fine" with your pacemaker..

"What is Atrial Fibrillation? Atrial Fibrillation (Afib) is an arrhythmia, an irregularity of the heart’s rhythm. Instead of only one area in the atrium starting an electrical signal, many areas send out electrical signals. This whirlwind of electrical impulses or wavelets spreads over the atrial tissue and causes the atrial muscle to quiver or fibrillate, instead of to contract in an organized way. Some of the electrical impulses still travel down through the heart and make the bottom chambers squeeze or contract. The irregularity of the impulses traveling down from the atria makes the ventricles beat irregularly, so if you take your pulse it may feel irregular. Sometimes Afib can make the pulse fast and irregular or slow and irregular. Afib alone is not a life-threatening arrhythmia, but it can be extremely bothersome and sometimes dangerous.

Atrial fibrillation can be paroxysmal (episodes come and go on their on), persistent (episodes come and last until you are put back into rhythm) or permanent (the heart stays in Afib despite efforts to convert into a normal rhythm).

What are the symptoms of Afib? Atrial fibrillation episodes can last minutes to hours to days. People with Afib may have a wide range of symptoms or have no symptoms at all. People with Afib may be bothered by the fast irregular beats, or just by the feeling that it is beating irregularly whether it is fast or slow. Sometimes after an Afib episode ends, it takes the top chamber (atrium) a short time to kick in again, and there may be a short pause in heartbeats. This may cause an uncomfortable feeling for patients that is more bothersome than the fast heart rate.

Because the way the heart is beating and pumping is changed during an Afib episode, you may feel some other symptoms especially when you are active.

Palpitations—skipped or extra heartbeats
Shortness of breath---especially when climbing stairs, walking long distances
Fatigue and tiredness—especially during an AF episode
Chest discomfort or pain—because the heart is pumping as well as when it is in normal rhythm
Dizziness--sometimes people may feel lightheaded or dizziness, especially when the heart is beating faster than usual
Syncope—Passing out or fainting

Is Afib dangerous? Atrial fibrillation can increase your risk of having a stroke. There is a 5-fold increase for stoke in patients with Afib. Although the rhythm of atrial fibrillation is not life threatening by itself, there is a 2-fold higher rate of death in patients with Afib compared to those without AFib. Also, if your heart rate is fast and is left untreated, it may further change the size and function of the heart."

Good luck,

Smitty

Settings

by Jaybee - 2009-06-03 02:06:26

Hi to all.Tracey tells PM increases HR when it is low,does not reduce if it is higher.Please clear my doubt what does upper rate settings do?.
Do lighting and thunder storm affect PM?
Regards.
Jaybee

limits

by Tracey_E - 2009-06-03 06:06:44

This is how it was explained to me when I was a kid... The atria is the brains, the ventricles are the brawn. The SA node in the atria senses the oxygen level in your blood and raises/lowers your hr as needed. The SA node tells the AV node in the ventricles how fast to go, the ventricles generate the strong beat that we feel as our pulse. When you have an AV block, that signal either always or sometimes does not get through. So, your atrial rate- the body's natural pacemaker- is generally perfectly normal and does not need help setting the pace. The pm watches. It senses when the atria beats and gives the ventricle a fraction of a second to beat. When it doesn't beat, it generates an impulse that causes it to beat.

The pm has a lower limit, usually around 60. It won't let your heart go slower than that. So, if the atria goes more than a second without beating, it'll generate an atrial beat. Those of us with blocks rarely need this feature, but it's there for safety. This number is more important to people with atrial problems.

The pm has an upper limit, usually 120-130. The pm can't go faster than that, so if your natural atrial rate goes up to, say, 150, the pm will only pace the ventricles up to the limit so your atrial rate could be 150 but your pulse will not go above 130 (or whatever). This can make you feel dizzy and short of breath. It's very common for younger people to need this limit raised a bit from where they send us home. Mine is currently at 170 because I get in the 160's when I work out. They can tell when they check your pm if you are bumping your upper limit. Ask them if you are, and if yes, request that they raise it higher.

The pm can't slow you down because the only two things it can do are sense what your heart is doing and generate impulses to cause a beat. If the atria goes faster on its own, there's no way for the pm to tell it not to. All the pm can do is control up to what rate the ventricles will keep up.

And no, lightning and storms don't hurt it.

Thanks

by ecf2xtreme - 2009-06-03 07:06:09

Thanks everybody, I appreciate your info!
Ellen

Me too! lol

by Hot Heart - 2009-06-07 04:06:38

I learn something new every day. Im in A fib, hadnt really got a clue what it was. Thanks HH

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