Turning off PM?

There is a difference between 'OFF' and doing nothing

by crustyg - 2020-02-17 17:59:34

Hi: I'm pretty certain that as now configured (no pacing output) your PM will still record events (that it's been set up to record) and perform data sends (as programmed), but not pace you.  'OFF' will do nothing until turned back on again.  In the present mode, it's probably quietly recording PACs/PVCs and writing them to an internal log.  If your PM has truly been set to not pace then it won't - whatever rate you drop down to.

Your laboured breathing symptom sounds as though that little 1-2% pacing was doing you some good after all.

But your questions should all have been asked of your EP doc at your last programming session.  It's not going to help you having your EP doc make changes (apparently after discussion with you, and with your consent) and then come here to second guess everything.

Either learn to trust your health advisors, or change them.  Make lists of your questions and don't get up from the chair until they have been answered to your satisfaction.

Of course, there's nothing wrong in getting your EP doc to set your PM to not pace you, go home, find that things aren't so great and then rush back to say 'please put it back as it was, I don't feel so good'.  I've done it (24h later!).

Turning my PM off?

by Keithwhelpley - 2020-02-17 19:24:22

Crustyg, in this post I'm hoping to get information to help formulate my questions. The problem I have, as many do, is I know so little about PMs that I don't even know what to ask. It dawns on me after an appointment. And appointments take time to get and they cost. But most important, I want information from people who have PMs and have lived throught these things. Unless an EP has a pacemaker, I don't trust them to know PMs or certainly the feelings. 

I love my current EP. And I trust he has my best interest at heart. But if it wasn't for me thinking, reading, googling and interviewing retired engineers, we never would have found out that it was my rate response that was causing my repeated tachycardias. The doctor, who doesn't have a PM only wanted me taking flecainide - a very dangerous antii-arrhythmic drug. If I had "trusted my doctor" I would still be in this dangeous drug meant to supress sudden death. He only turned Rate Response off after I insisted, and he assured it wouldn't kill me. But he was happy my hunch paid off. Now he knows more too. Your healthcare should be a collaborative effort. When my repeated VTs began, I kept telling them that since I don't have what the PM was put in me for, maybe there is a pacemaker-mediated tachycardia going on. They all looked at me like I was a nut. That was three doctors -- one from them at the Mayo clinic. In the end they all were wrong and I was right. Th Rate Response was triggering the VTs. When it comes to PM's don't trust your doctors know about them, especially if you're not getting the promised results.

Thank you for your thoughts. I wonder if that 1-2 percent was giving me what I needed. I'm willing to go back there if I have to. 

Another thought is that I should give it 2 weeks to see if my body simply needs to adjust to the change, especially since I have been on a PM for more than 2 years. That's a valid point too. 

Bottom line is I wan't people who have lived it to help me formulate questions before I see my doctor rather than trust I can think of them in real time. 

All the best.

I believe your lower rate is too low

by Gemita - 2020-02-18 15:53:48

Hello Keith, 

I have been following your posts and in many ways you remind me of myself ! 

My question to you would be if we were able to help you to prepare some valid questions to ask your EP, would you really be prepared to listen to his answers or follow any of his recommendations ??  You come across as someone who knows himself very well and is determined to follow a course which you strongly believe is right for you.  Your comment that three doctors were wrong and you were right confirms my belief that you cannot be reassured by what your doctors are tellng you.  I dont know what the answer is but you need to find a doctor with whom you can confidently work and someone you can respect and completely trust. 

I certainly wouldn't be allowing my heart rate to go down to 30 bpm and risking inadequate blood flow to my organs even at rest. I also wouldn't be happy to allow ectopic beats to surface due to a slow heart rate.  I agree about Flecainide causing tachycardia and being pro arrhythmic - it was for me too Keith as I mentioned in previous posts.  I am so much better without it but I am delighted with my pacemaker keeping my heart rate strong and mostly regular.

Your laboured breathing would concern me and I wouldn't want this to progress.  I would not be too proud to ask for some pacemaker assistance to keep you well Keith.  You have taken steps to stop Flecainide but if you let ectopics surface you may need an anti arrhythmic again to control these and those ectopics won't be helping with any breathing difficulties you may develop.  On balance I would say the 1-2% of the time you were paced was necessary and you might do well to reverse your decision to turn down the rate 

Turning my PM off?

by Keithwhelpley - 2020-02-18 20:40:21

Gemita, thank you for your comments. And along this two year trek, I have thought the very same thing about myself -- Am I just looking for a doctor who will tell me the answer I want?

NO. 

I just want a correct answer. I want a diagnosis that goes with the treatment I was given. As it is, I have no diagnosis. And the relief that was expected after the implant has never come. I've struggled to stay conscious and oxegenated most of these two years. 

I've found that there is a conspiracy among doctors when it comes to PMs. None wants to question what the previous one has done. All I sought was a doctor to question the PM or even the original settings. None did that, even after it was clear all the previous diagnoses were inaccurate; even after the original treatment strategy was dismantled because of the harm it was doing. It remains engaged with no real purpose. A treatment looking for a diagnosis.

My final strategy with my docs was to roll the PM thresholds back or to shut off the PM all together and let my heart tell us what it needs rather than continuing layering treatments that seemed to cause their own problems.

If this breathlessness doesn't go away, I will have my doc push my low threashold up to 45 or 55. By then I will be satisfied that I arrived at my diagnosis of a sinus node imcompetence -- if not sick sinus syndrome. But even then, I will start looking at whether DDD is the correct mode. According to the American College of Cardiology, that is the mode for AV block , not sinus node dysfunction. Yet, DDD is the most common mode setting used. Hmmm, I think doctors need to be questioned a lot.

Pacemaker settings

by Gemita - 2020-02-19 04:44:47

Conspiracy seems too strong a word to use about doctors Keith, although I do understand what you mean.   Certainly my present EP is reluctant to  openly discuss with me what a previous colleague has done, but good doctors do not deliberately set out to do harm to their patients.  

Our bodies are so complex, particularly the autonomic side which may well be involved in many health conditions including those of the heart, but it is often necessary to rule out other potential diagnoses before the correct one can be arrived at.  Even then, there will be considerable overlap with other conditions since one condition is rarely present on its own. 

In my experience trial and error has been a necessary part of finding the best treatment for my heart’s electrical problems even though it has been a slow and painful process.  I understand your concerns but you will surely get there with all your efforts Keith.  I believe your pacemaker will ultimately help you when your settings ARE RIGHT FOR YOU. 

My pacemaker  is set AAIR and only changes to DDDR mode during detection of atrial tachyarrhythmias I believe, and then goes back to AAIR mode on cessation of arrhythmia.  There is so much to learn in this complex area.  My pacemaker was implanted for syncope, pausing, bradycardia.  I have many tachyarrhythmias including AT, AF, Flutter, SVT, non sustained VT.  Frequent ectopic beats often triggered tachy/bradyarrhythmias but my pacemaker seems to be finally helping to control ectopy especially after stopping Flecainide!

I do hope you will find a suitable technician to work with and that you will find a good treatment plan for your symptoms 

Turning my PM off?

by Keithwhelpley - 2020-02-19 11:50:09

Gemita,

Your comments give me hope, and I think I finally have found a doctor (young). He listens, unlike any I have had (8). I am going to ask about the AAIR mode. I do believe we will arrive at the right setting. My heart history is so complicated and it began at birth with a defective aortic valve at birth. Because of that and an aortic valve replacement six years ago, it is so easy for cardiologists to lump me into a heart failure category. Yet my whole lifestyle suggests otherwise. And every test suggests otherwise. 

Where pacemakers are concerned I do believe there is a conspiracy among cardiologists, but it doesn't come from an intent to do harm or get rich. It has to do with just not questioning the last doctor's analysis. Mybe it's because of my research and journalism exprience, but questioning the last doctor where a pacemaker is concerned should be the very first thing . Conservative estimates put the number of unnecessary pacemakers implanated at 20 percent, yet when you ask a doctor how often they explant pacemakers (I've asked all mine). it comes in at nearly zero. 

But that isn't the purpose here. And I am going back to my EP and he is going to investigate my set of symptoms.  I am going to bring up AAI or AAIR (yikes, no rate response). But first I'll research. 

Turning my PM off

by schoo - 2020-03-05 10:23:07

Re: uncommunicative cardiologists

I think I must be lucky then as the one who implanted my PM was very happy for me to go to one of his collegues to get it "reburied" (what a weird word!) because it was annoying and hurting me. I now see both chaps and each is quite happy to accept what the other says.

BTW I'm in the UK and my cardiologists practice at the Freeman Hospital in Newcastle upon Tyne.

Turning my PM off

by Keithwhelpley - 2020-03-05 11:17:33

Schoo, I'm glad you have two good ones. Now I have one good one, an EP. I haven't replaced my general cardiologist. I think the U.K. takes a different approach to healthcare than US. 
 

BTW, my new EP did listen to me.  Conducted some tests and arrived at what I have been telling them. He has effectively turned off my PM. Ind I've been feeling better than ever. My hope is that after some time we can consider removing it. I don't want to keep it in if it's not needed. It only makes my healthcare more expensive.