post implantation (new) symptoms

I'm an active person and generally feel well & exercise nearly everyday. Recently I ignored transient episodes of dizziness on exertion until my heart rate dropped to the 30s (BP was OK). Ended up with an implanted pacemaker for 2nd degree Mobitz 2 conduction block. But NOW I'm experiencing new symptoms: brief episodes of shortness of breath, BP drops when I stand up and walk a few steps leaving me feeling slightly dizzy (heart rate goes up at this time, though), and I have frequent episodes of my heart racing and thumping hard with a rate of 95 to 120 for a minute or two unprovoked while I am at rest. My usual resting heart rate is in the 60s.

I saw a cardiologist and had an interrogation done, but she said the pacemaker looked good. I wore an event monitor for 3 weeks during which I had multiple episodes of my symptoms, and now she has referred me to an electrophysiologist - without giving me a diagnosis. I'm waiting for an appt sometime in several weeks to a couple of months.

I actually feel worse now after receiving a pacemaker. Before, my heart rate was in the 30s to 40s, but most of the time my BP was stable (the ER staff was amazed). Now I have more unpleasant symptoms that occur frequently. I used to cycle fairly fast and hike in the hills without difficulty, and now walking easily or climbing a single flight of stairs leaves me winded with an erratic heart rate.

Any one out there experience a similar situation? Any suggestions?

6 Comments

Just keep in mind

by ElectricFrank - 2012-09-04 02:09:51

The cardiologists and pacemaker techs don't have a lot experience with athletic patients so what they feel is OK may be for the usual sedentary person. Just look at who is in the waiting room of the interrogation clinic.

frank

atrial rate

by Tracey_E - 2012-09-04 09:09:27

It's likely your atrial rate was doing that the whole time, but because of the block the signal wasn't getting through to the ventricles so the symptoms were masked. Now, the pm makes the ventricles beat whenever the atria do, so your heart is in sync (that's a good thing) but sometimes too fast (annoying!).

I had a similar situation. I found it slowed down on its own over time, a year or so after my first pm, as my heart got used to being in sync. Between my cardio and St Judes rep, they got my settings adjusted so that I can exercise and basically do whatever I want. It didn't happen over night and I ended up on a low dose of beta blocker to control the racing but now I feel great.

Don't let them write you off and tell you this is as good as it gets but be patient with them, they like to make changes in small increments so it may take a few tries and this likely isn't something they run in to often since most patients are not young, healthy and active. Hang in there!

a thought- ask if your rate response is on. Sometimes they turn it on automatically but with av block we don't need it. This is for people with atrial problems, extra support for when the atria doesn't go up normally on its own the pm kicks in and raises the rate. With av block our atrial rate is usually normal, our problem is the signal not getting through to the ventricles, so sometimes if rr is on it will compete with our natural atrial rate and cause unnecessary racing.

Keep Asking Questions

by Many Blessings - 2012-09-04 12:09:47

Hi,

Everyone reacts differently to a PM. Check with your EP doc, cardiologist, and PM Tech to see what they all say. Write down all symptoms you're having, even if you don't think they're related to your PM. One of them may know exactly what's going on. Maybe it's temporary, or maybe it's something that needs to be fixed.

Hopefully, it's just a settings issue. Even if they think your settings "look good", they may not be good for you.

Most of us has experienced horrible symptoms from bad settings. Look at my recent post about what happened just a couple of weeks ago when my settings were changed, supposedly for the better.

My tech explained that they follow a guideline for PM settings. I'm a little over 4 months post PM. For me, it was time for them to turn on another chamber's rate response. They also turned on a capture feature and dropped my rate down to 70.

One or more of these changes made me feel like crap! I couldn't even make it up the stairs when I went back to work. I was out of breath, dizzy, numb in my face, tongue, hands and feet, and felt almost slightly paralyzed (heavy legs, feet, arms, hands, etc. that would barely move when I tried.) Tests showed my cardiac output was very low, as was my oxygen level, especially when moving. I was feeling great before they made changes so I knew the changes were wrong for me.

A few days later when they changed my settings back to where they were, I started feeling better within hours, and LOTS better within a day or so. It's unbelievable what bad settings can do. I'm back to normal now!

If the docs can't find another answer to what's causing your symptoms, please ask if they can make some changes to your settings. Experiment with it a little. If your rate response is turned off, ask for it to be turned on, or visa versa. You may need your rate upped or lowered. Again, you can't compare your settings to others (though some can give you great advice & ideas what may need changing), because what's good for most may not be good for you. It just depends.

Don't give up! A change or two can make a HUGE difference for the positive. Most out there will agree. I pray that's all that's happening with you.

Again, please keep checking with all of your doctors and techs to see what else it could be (others out on this site will give you ideas too). If they can't come up with something, do look into getting your settings changed.

Best of luck to you!

Why is this happening to your heart?

by arthur - 2012-09-05 07:09:04

What caused the damage to your heart?
Have you looked into the disease, Sarcoidosis ( http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001140/ )?
I wish you the very best!
Arthur

I concur

by PacerRep - 2012-09-06 01:09:18

This is definitely a programming issue. It could be many things from the rate response already mentioned (although its doubtful since you felt fine without it before you had the pacemaker). A likely explanation could be something as simple as your AV delay (the timing cycle for the top and bottom parts of your heart )is not appropriate, if its too short or too long it could cause the bottom part of your heart to compete against the top causing a "sloshing" of the blood better known as regurgitation. If you have blood going the wrong way then that always makes you feel like crap. You just need to get a good tech to start fiddling around and make sure they aren't just using the generic settings for you.

Also just as an FYI when a pacemaker "looks good". All that means is that the voltage is set appropriately to make your heart squeeze, the wires are not broke, and that the device can "see" your heart squeezing....It means nothing to the effect that the timing cycles of the device are set right for you. It literally just means that the device is working (not necessarily optimally).

Looks good!

by ElectricFrank - 2012-09-08 07:09:43

I agree with your comments, but you left one thing out. "Looks good" may not refer to the patient, but rather the tech noting that he/she can get the patient out the door and bring in the next. LOL

Seriously, a pacemaker deals with a lot of complex functions that nature normally handles well. When you consider that the timing PacerRep mentions isn't just a fixed value, but varies with HR and stroke volume, things get interesting. How about the way our natural function starts increasing HR when we anticipate the need coming up, like seeing that bus we plan on catching coming down the street. Before we ever start to run our HR begins ramping up. There is no way our little friend can handle all this, so it's important that the available functions be optimized.

frank

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