new pacemaker

Sorry for all the questions, I am a newbie.  This is my first post.  

I had a dual lead St Judes PM placed on 03/13.  My first check is in June. 

Currently set at atrial rate of 60, all other settings are at default.  PM was placed for Junctional rhythm of 47-49 with no P waves.  

My questions:  

Have times I am constantly at 60, regardless if I am moving around or sitting.  If it goes on for a while I feel slightly nauseous, with the same funny feeling in my throat I had with the JR, and  very tired.  As the rate does not change with movement, is this when I am being paced???  I thought the PM would keep me out of the JR, but this is how I felt before, but not as intense.  

Was wondering if I should ask for the motion mode to be turned on.  I am fine when my heart rate is above 60 and varying on its own with exercise, etc.  I have no idea of what I should ask for, and it seems you have to ask.  Would greatly appreciate your advice on settings.  I want to feel good again, not go to work and and go to sleep.

Any  suggestions would be most appreciated.   There does not seem to be a lot of info out there on junctional rhythms.  

I also have 3 areas of significant scar tissue  in the atrium from surgery for  ASD in 1968 with dilated right atrium, mild TV and PV regurgitation.  I am not sure what part  of my symptoms is due to the electrical problems, and what could be from anatomic issues, that wouldn't be fixed by the PM.

I am so thankful for this site.  

 

 

 

 

5 Comments

New

by AgentX86 - 2020-05-18 22:12:34

Hi Joy, welcome to the group!

It sounds like you have a pretty good hypothesis here, or it could be PVCs showing up.  They're pretty common in us, at least at first.  I have my resting rate turned up to 80bpm to get rid of the PVCs.  OTOH, it is quite possible that your JR poking through at 60bpm but it's unclear why your sinus node isn't naturally raising your rate above 60 at times.  Do you have SSS, in addidion?  If so, you'll probably want rate response turned on. It may take some fiddling so the two aren't fighting each other when your SI is functioning normally.

Asking is good but they should be able to help you out from your symptoms, PM interrogation, and if possible a remote transmission when you're feeling "funny".  It would also help to keep a history (with dates/times) of these events so your doctors can compare your diary with your PM's logged information. A remote download when it's occuring will give them a lot more informaiton than the other alternatives.

AgentX86 thanks for responding

by Joyg2b - 2020-05-18 22:24:52

Thanks AgentX86.  Yes, SSS.  Had ablation for atrial tachycardia and Atrial flutter in 2019,  then 11 months later had the junctional rhythm with no P waves, thus the diagnosis of SSS.  Was told atrial septal defect patients seem to have SSS 30-50 years postop. Was suppose to be seen in the pacemaker clinic, but they have changed my appointment to be  seen and "tweaked" if needed by the EP doctor.  

Thank you 

Tune Test Tune Test

by CyborgMike - 2020-05-19 01:13:38

I also have a st jude PM and a form of SSS. There are a lot of settings, including rate response. I found that my EP kept settings very conservative and close to where my heart was at before the PM and then increased more with time. I had six or seven tune ups in the first six months to get everything working well. That is more than the average bear, but I was assertive. Now I love love love my PM. It is invisible to me 99.9% of the time.

Another suggestion would be to get an Apple Watch (if you own an iphone). It has an ECG built in, so when you feel chest tightening you can see what is going on. Before my PM I could see junctional rythms on the watch ECG. Amazing. 

Turn up the base

by PacedNRunning - 2020-05-19 03:32:22

When I had junctional they increased my base from 40 to 60 to stop it from happening. Maybe they could try 65 and then 70. I have sinus arrest and when that happens my junctional rhythm takes over. 

Thanks everyone for the suggestions

by Joyg2b - 2020-05-24 21:10:23

CyborgMike.  I have an Kardia Alivecor, whicht does not work properly now with the PM.  Read on this site both the Alivecor and Apple watch work with a PM, depending on where your atrial lead is placed.  This will be first visit since placement  3/13, so I intent to ask where my leads are placed.  I have been able to watch the rate stay at 60, while running in place, with pacemaker spikes on a finger oximeter. You give me hope.   Can't wait until I reach the "love my PM" life.    

Pacedmyruns:  Thank you, yes I think increasing my base to 65 is a good place to start.  That is closer to my normal resting rate. I would not need the rate response all the time and, as agentX86 pointed out,  I don't want them fighting each other when it is working normally.  My atrial pacing  is 31%.  There is so much to learn.  I am so thankful for this site.  Knowing someone with a pacemaker, and having one yourself, is eye opening.  They are not Plug-N-Play like I thought,  LOL.   

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