5 weeks post implant / settings still not right

I have had my PM for a little over 5 weeks. No adjustments have been made to the PM at all during this time. I had one in office interrogation and 2 via my home monitor. Prior to surgery I was on Bystolic. After surgery Flecanide was added. I have SSS or Tachy/Brady syndrome. Pacemaker was put in so the could treat the Tachy part with meds but have the PM as backup for the Brady part.  The combination of Flecanide and Bystolic and PM gave me low BP so they removed the FLecanide. BP was still low so the cut the Bystolic to 2.5mg. I am experiencing symptoms of Pacemaker Syndrome so now they want to try another anti arrhythmic drug.

My question-shouldn't they try adjusting the settings on the PM? Is there some time period that they don't do that after surgery? According to my medical degree from the university of Google, Pacemaker syndrome can be treated by adjusting the settings on the PM, medication or a combination of both. The side effects of the new med (Propafenone/Rhythmol) they are thinking about are worse than the side effects of the Flecanide.

Any thoughts? Its been 5 weeks and I feel worse than I did before the PM. (I felt fine before the PM except for 2 instances of feeling lightheaded and a history of random fast flutters for the past 7 years.) Just when I get my anxiety under control it seems another shoe drops.

Cathy


3 Comments

5 weeks

by FitMomma - 2017-05-02 11:15:59

I feel worse than I did before I got my pacemaker. Physically and emotionally.

cathy

6 weeks

by Tracey_E - 2017-05-02 11:32:13

The usually adjust around 6 weeks once the leads have had time to settle in and the heart get used to being paced. It also can take about that long to adapt to new meds so I can see why they aren't messing with it yet. You c not always try going directly to the doctor, techs and nurses aren't authorized to change much. Be clear that you feel worse than before. 

may take a while

by dwelch - 2017-05-10 02:16:13

Understand my first one was 30 years ago, and the technology was not nearly as good as today. May have taken a year to get mine dialed in right.  It takes a while for the scar tissue to build around the lead in the heart muscle, this affects the resistance of the lead which affects the settings.  The current pacers are quite programmable and in cases have automatic things that they didnt used to have.  But first it does need to settle in some, not that they cant make changes now, but the final tweaks will happen over time.  It may take a while, might take the whole year, in some cases may depend on insurance how often they can have you in and on the machine, certainly not to the point of danger of course, but they are not going to want to make a bunch of changes all at once, a tweak here and there.

Some percentage of this is you mentally and phsycailly settling in on the device, you should feel different the definition of better or worse is relative, might not be sleeping of your pacer now keeps you at a different rate, something you have to adjust to, they can lower your lower limit perhaps to help they might have other settings, but make a list of your symptoms.  In my case it smoothed the heart out so much I felt empty in side was constantly checking my pulse to see if I was still alive, reading these forums some folks the new pacer makes their heart beats harder, they can feel them now.  As with anything anxiety is a problem, and cant just say dont worry about it, not that easy obviously but try to isolate anxiety, mental, from physical, make  list if you need and take it in.  if you are struggling to make it to that next visit, dont wait, call them and get in sooner, tell them the issues, educate yourself on what your pacer does and what it is supposed to be doing for your condition and what setings if any they are changing.  

They will run tests during the visit, that should make you feel one or more kinds of strange, someone sitting on your chest, crank you up and you breathe harder, can feel like they didnt put it back to the settings you came in with (if that is desireable as it is once they get you dialed in) but they have those settings are temporary...They serve a purpose they are testing each lead seprately to see that it is working right, as well as any tests related to your condition.  the first interrogation on this new to me three lead pacer when they make the ventricles run out of sync the doc told me this might hurt, it actually did, but a week later it didnt, just uncomfortable, will see in a few months...

Once they get you dialed in, then they wont need to change it unless you tell them you are not feeling right. pacer one to two to three they can keep the same settings.  just give it a little time.

When in doubt, take your pulse for a full minute, confirm you are still alive...

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Pacemakers are very reliable devices.