Symptomatic

To my Sinus Node pause friends, 

Well here I am, creeping up onto my year anniversary...July will be one year since my pacemaker install date. The first month was the worst, tons of PVCs, pacemaker pacing throughout the night when I'd try to fall asleep, several adjustments, complaining, trying to figure it all out...yadda. 

I have thus far just come off the best two months since the install, I almost thought I've been cured of Sick Sinus Node Syndrome, and then...lol

I had a few pauses (I still feel symptomatic), I can feel a pause coming on, and I can feel the interaction happen when I get a pause and my pacer pace, what I feel is the corrective beat happen, and my heart rythem change as the rythem gets corrected. I get a bit anxious, as it feels strange and then I feel the need to cough. I don't pass out anymore as I did prior to the pacemaker, but I still feel uncomfortable when my pacemaker is working, very unnatural feeling and very hard to explain. 

My Abbot rep swears the settings are locked in to best benefit me, but I'm wondering if anyone in this group feels these phenomenon that I'm trying to explain...?

Thank you guys for all your support and help. 

-Michael 

 

 


6 Comments

Symptoms of "pausing"

by Gemita - 2022-04-21 12:50:03

Hello Michael.  It is miserable, I know.  Pausing for me is what I feel when my heart rate slows down and a long pause is followed by a thump and maybe a sudden increase in heart rate to compensate and to help my blood to circulate effectively again.  At least that is what it feels like to me.  And I certainly feel pausing and absolutely hate it.  I would rather have a slightly racing heart - far less symptomatic.  I had these sensations before my pacemaker and I continue to experience these symptoms occasionally with my pacemaker, but they are becoming fewer and less symptomatic.

I know we have been here many times before and you won't have any of it, so I won’t try to tell you that what you might be feeling could be ectopic beats when you quite clearly are telling us that what you are feeling is the pacemaker working.  I think the only time I feel my pacemaker kick in is when I go into an arrhythmia like atrial fibrillation and the pacemaker switches modes.  I certainly don’t feel my pacemaker kicking in when I fall below the minimum rate set of 70 bpm.  Perhaps it is because my own minimum rate is so much lower that the pacemaker is beating for me at all times now and is not shifting in and out of the 70 bpm range.  What is your minimum rate set at.  I wonder whether a higher base rate setting would help you?  It has largely corrected this pausing for me.  The need to cough is very common for me too when I get these symptoms.  It can help me to stop these sensations.

So in answer to your question, I would say there are many, many members here who feel this pausing that you describe. Getting a definitive diagnosis for this symptom is the difficult part and would require close monitoring and correlation of your symptoms to the pause and cause for the pause, at the exact time it occurs.  I would persist with your doctors until you get an answer, particularly as you are so symptomatic.  Pacemaker adjustments may still be needed to help overcome this.  I am though reassured that your symptoms are improving Michael, so keep up whatever you are doing.  Good luck

As Gemita says...

by Gotrhythm - 2022-04-21 15:31:07

I cannot improve or add to the gentle wisdom, compasion, and acceptance in Gemita's comments.

YOU said, "I'm wondering if anyone in this group feels these phenomena I'm trying to explain..."

Since I and others have assured you many times that we have felt these phenomena,  I don't understand why you don't know the answer to that question.

So that's my question to you. Why do you keep asking?

I keep asking….

by Hyperfocussed - 2022-04-21 15:57:38

Well, I have come to this platform as a form of counsel, an empty void to express my condition and seek the assurance of others, support of others that may be going through the same thing that I am going through. I feel like the more times that I experience my sinus node pauses, I am becoming a little more understanding on how to vanactulate and articulate a little better...my experience. Each time I may capture someone new to talk to. In the past, my poor explanation of being able to feel my pauses, followed with my pacemaker pacing has been ridiculed by others as "you cant feel that" to "thats not possible"...now, with better explanation, I get people siding with me and explaining that they to feel what I am describing. Being symptomatic and getting a hot sensation behind the neck, perhaps a deafening hollow sound in the ears, followed by my heart rythem being corrected by my pacemaker during a sinus node pause is very draining emotionally and I like to use this site as a form of support for myself and others....

Thank you

by Gotrhythm - 2022-04-22 11:57:52

I think I understand where you are coming from better now.

Hope you'll be feeling better soon.

Happy anniversary!

by Persephone - 2022-04-24 22:08:22

I have nothing to add to the conversation, but just wanted to say that I understand the significance of the anniversaries. Hopefully over time they will become less and less meaningful to us and just be more like "oh, yeah, I'll need to get device replacement in X number of years". Best wishes to you.

Sometimes I Feel It Too

by MinimeJer05 - 2022-04-24 22:29:27

Hello,

I'm glad to hear that you've mostly been feeling better. I guess I try to focus on the "I feel more good than bad" aspect as someone on here once told me, we have pacemakers and electrical problems with our hearts, we might not ever be able to feel 100% normal all of the time. The goal is to feel more good than bad and just hope the bad passes or doesn't stick around for too long. 
 

Shorlty after my PM install, I would swear that I could feel my PM kick in. I recorded these times and checked with my technician/nurse and a few times I really was, yet while other times I definitely wasn't. 
 

For me, it's a brief shortness of breath (less than 5 seconds), which usually induces a cough. If I freak out, this can trigger a panic or anxiety attack -- if I do nothing, I can usually move on with my life within 30 seconds. These use to REALLY scare me and make my mind race, but I honestly try to ignore them. 

If they're serious or fatal, than I'd assume something else would follow, and if they're not, I'll just keep a mental note and mention them at my appts or if they start happening more. Last one happened last week, but before that, it was probably a month. 
 

Hopefully there's nothing to worry about and you celebrate your one year anniversary on a normal note and can learn to embrace the PM and hopefully even forget about it. 
 

Take care

Jer

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