DDDR on temporary pacemaker sheet.

Ask for a summary sheet of your settings

by Gemita - 2020-11-20 16:40:46

John, very briefly, although you have a dual chamber pacemaker with a rate response capability, is rate response actually turned on?  Ask for a copy of essential settings or eventually get complete copy of ALL your settings and then you will know what your settings are.

My pacemaker can also operate in DDDR mode.  My RR is clearly switched on although I usually have no difficulty raising my heart rate.  However sometimes I need to get my heart rate up quickly and without RR turned on, I would be held back.

rate response

by Tracey_E - 2020-11-20 16:49:40

I mentioned this in one of your other posts. It's not a safety issue. People with known sinus issues need it on. AV block typically does not need it so some doctors turn it off while others leave it on just in case. It will only raise your rate on exertion if the heart doesn't do it on its own. Sometimes we feel better with it off but most don't feel a difference, it's just there if you need it. I am one of the few with av block who has it on, uses it, and likes it that way. It gets my rate up faster when I work out that it would go on my own.

You can ask them to turn it off. However before doing that, I would ask at your first check if you are using it. If you are, and you feel good on exertion, then I'd leave it alone. 

The pacer is a gas pedal. It can only make the heart go faster. It can't prevent the heart from going fast on its own. When that happens,it just watches. 

Rate response

by AgentX86 - 2020-11-20 18:32:36

To amplify what Tracy_E said; if you feel good and can do what makes you happy, leave well enough alone.  Changing anything can only make it  worse.

Rate response

by quikjraw - 2020-11-21 12:39:00

Another question to have confirmed at my appointment whether that is something they have set on the pacemaker - I would hazard a guess that it is turned on as they could have typed any pacemaker mode on my personal pacemaker slip but as you say Gemita there is only one way of finding out.

Factory set

by PacedNRunning - 2020-11-23 07:12:56

They all come out of the box with this setting on.  I have heart block and they turned mine on. Awful! Felt like I was 90 years old and didn't need help getting my HR up. My HR Is slow to increase because I do have bradycardia and athletic but I don't need to go to 50-100 in 2 seconds. Ha! What my own heart does is just fine. :) Ask at your next appt if you need it and if not, have it turned off. Mine is off.

Factory set

by quikjraw - 2020-11-23 10:28:14

Yes if it is turned on then I will ask more about why they left it on. I assume they will have a clever way of knowing if I am using it but I would not know what a normal rate of change of heart rate is during exercise.

I know I take several minutes before my heart rate is at maximum heart rate when running but I had always assumed that there is a very good reason for this so never questioned it.

DDD(R): My experience

by Keithwhelpley - 2020-12-31 13:48:48

As I understand the DDD mode on pacemakers is the most commonly used mode. That is the mode mine was set at for a diagnosed Sick Sinus Syndrome three years ago. But for unknown reasons the "R" was turned on and it threw me into ventricular tahycardia. I would have 4-8 a day. Luckily, my dual chamber also had an activated ICD, which meant when I went into VT, it paced me out (before it jolted me). Only to be followed by another VT.

My general cardidologist and EP couldn't tell me why it was happening so put me on the powerful antiarrhymic drug flecainide. It did supress the VTs ( could feel when one tried to start but then was supressed). But  the drug came with so many sideaffects that I couldn't sustain it. Yet my docs couldn't tell me. I went to the Mayo Clinic and spoke with their EP and he couldn't find an answer. But he was concerned that I was on so much flecainide.

With no answers from doctors, I turned to engineers. I located a recently-retired pacemaker engineer who immediately became interested in my story. The first thing he asked was: "why is rate response on? Do you you have chronotropic incompetence?" The answer was no, I didn't. (Chronotropic incompetence is when your heart can't increase or decrease its rate on its own, so needs assistence from the rate respoinse). He said, ask your doctor about that. 

When I did, the EP (don't get me wrong, I love my EP. He's a good doc) was reluctant to turn it off because it was the original setting perscribed by my GC, though he confirmed that turning it off woulnd't "kill me." I insisted he turn it off, then. He did. And the VTs immediately stopped. I was able to titrate off of flecainide and haven't had one since -- not even close.

After further research and more talking to the engineer: what my pacemaker was doing was called "Pacemaker Mediated Tachycardia,"  originating in the ventricle -- which is very dangerous.  The hardware and software worked against me based on what it was reading and the nature of electricle conduction. The PM created dangerous electricle loops that, for me, meant sudden death. It won't happen to everyone, but my situation created the perfect storm.  

The reason for this story is to advise everyone to fully understand what mode you are in and why. question your doctor about it. There are amazing sources on information on the internet -- reputable sources. My doctors and company PM techs hate the internet because we question. But knowing my own situation literally saved my life.