vibration/shaky hands/ beta blockers/ what?

Frustrating

by Gotrhythm - 2018-01-29 15:39:28

You sound really frustrated. I understand. Pacemakers come off an assembly line, but people don't, meaning that all people don't have the same reactions to being paced.

Your pacemaker has lots of settings that can customize it to your needs, but there's sometimes as much art as science to finding the settings optimal for you. Tiny changes can make a big difference.

If you're one of those people who doen't have a standard reaction to being paced, and it sounds like you are, you're probably going to need not just a specialist, but one with more skill at manipulating your settings. Unfortunately, as frustrated as you are, you are probably equally frustrating to your medical people. In my case, the doctors here were doing their best, but they simply didn't have experience with rare or unusual electrical problems. I went to Duke.

To get the help you need, unless you get very lucky, you're probably going to have to learn to advocate for yourself. And that means you need to learn everything you can about your condition. Read every word of your test results. If you don't know a word look it up. The resources on line make that easy to do these days.

While you're researching, be sure to look up brady-tachy syndrome.

Then learn everything you can about your pacemaker. Again there are sources online.

You can't ask good questions if you don't know what to ask about. 

About shaking hands. Funny you mention that. Shaking hands was a symptom for me that my pacemaker wasn't set right. Don't know what or how, but when the settings were better conformed to me, the shaking went away. (Of course, many other things can cause shaky hands and frankly it never occurred to me that the heart condition had anything to do with it.)

thanks "Gotrythm"

by D_davis72 - 2018-01-29 15:49:13

you always have the most imformative information. Considering contacting Cleveland or Duke. & yes the shaky hands are a very wild experience to say the least. I have researched almost obsessively! The whole bradycardia turning  into tachycardia seems

to be an issue many deal with after reading much about it. The problem is, that is just really doesnt make sense to me. Its like they fixed one major issue and then I gained a bunch of small nuisance issues.... Hope this make sense. 

Issues

by ROBO Pop - 2018-01-29 20:39:27

You are still new to this and frankly it sounds like they don't have a handle on programming that meets your specific needs. 

First some pf the symptoms you are experiencing are quite probably a side effect of the beta blocker (Toprol) you are taking. Beta Blockers take time to build up in your system and until they do, can cause you to be tired and shaky. Look it up on google and read the side effects. To reduce the effect of tired, take it at bed time. It'll help you sleep and you'll have more energy during the day. 

Beta Blockers reduce the work load on your heart and allow it to recover. It lowers your BP. I would well imagine if the Cardiologist prescribed it...you need it. 

Next, the settings...let me say if your heart is really hitting 300BPM at rest get your derriere to the ER. That's a dangerous rate. You need to tell your doctor what all is going on and about your lifestyle. Keep a journal and document. They should make adjustments and refine settings based on this and the information they get  from your device. 

Pacemaker mediated tachycardia is a complex issue and frankly a pain in the behind. Mine's been adjusted 4 times and I'm now dancing the macarena. It just means the device gets confused by some arrhythmias such as PVCs resulting in an increased pacing rate. Not the end of the world but definitely  pain. 

If within a reasonable time you aren't satisfied look for a second opinion. Honestly based on what you've said I'm not sure whoever is making decisions on your device settings is competent...then again 

You said, "This doesn't make sense to me..."

by Gotrhythm - 2018-01-30 13:18:30

I hear and understand the frustration of nothing making sense. I too had PMT, which it took a long time to diagnose. Only with the aid of this club did I come to understand how rare my rhythm issues actually were, and to what extent the doctors were shooting in the dark--trying a little of this, a little of that to see what would work. It's where the art as well as the science comes in.

One thing I came to understand: pacemakers these days can come very close, but they can't perfectly match a normal heartbeat. For most people, it's close enough and the heart adapts. But some hearts don't like being paced in certain ways, and don't adapt in a good way. That's why it can seem like, when one problem is fixed, two more pop up. Those people are going to need some skillful tuning to get pacemaker settings their heart can work with.

I know next to nothing about medications. I never tried one that the side effects weren't worse than the problem. But the right meds can make a big difference for some people.  Listen to ROBO.

Hope this helps.