Going into Paroxysmal AF

This morning I have gone into AF and my CRT -P pacemaker has done that mode switch thing. My heart rate is steady at 70. I felt it flip in the same old way when I turned onto my left side in bed. 

My heart feels different. Sort of like its pounding....a harder beat.  And I feel a bit wierd... lightheaded and breathless when I walk around. But I guess the beauty of this pacemaker is that it eliminates the irregularity. Also, It seems to be stuck at 70 even though they said it would sense movement and respiration rates but I can't get it to increase at all. 

However, it's a LOT better than irregular 150bpm for sure..

Anybody got any thoughts on mode switch with rate response and how it feels? 

TIA


13 Comments

Steady heartbeat

by Lavender - 2022-09-06 11:17:47

Good to have steady beat! I was so used to a slow beat-I felt like my heart had turned into a galloping race horse! You will get used to it and ignore it in time. Your brain is processing !

I have no expert advice to answer your question on the mode switch, but I am sure the troops will be along shortly. 
 

Just wanted you to know that you're heard and I am walking alongside!👱🏻‍♀️✌🏼

Mode switch

by AgentX86 - 2022-09-06 11:38:15

I think you're the only one here that has this feature.  From what you indicate here (need for RR) it is switching to VVIR mode.  ...and it seems the 'R' isn't working.  Call your EP or device tech (I have the number for a direct line to mine) and tell them you want an appointment, soon. It could be that they haven't turned it on yet, for some reason, or more likely they forgot.

As far as the pounding goes, you'll probably get used to it and forget about it.  It's possible this is due to the AV dyssynchrony. The atria and ventricles are out of sync so it can feel strange.

It'll be interesting to hear more about this as you get more experience with your new toy.  Keep us informed.

Will write more later when back at home

by Gemita - 2022-09-06 11:53:15

Dear Toni, I hope your episode of AF (Atrial Fibrillation) is easing and that any symptoms like breathlessness is tolerable now?  I first feel mode switch or indeed AF as a sinking feeling in my  stomach as though the arrhythmia/mode switch starts there.  This is followed by a sudden surge, then heavy fall in my heart rate and noticeable surge/fall in blood pressure.  This is often followed by some breathing distress until my heart settles into the irregular rhythm of AF.  Because I am taking a beta blocker the heart rate is usually controlled but not always and then I try vagal manoeuvres or positional changes to try to stop the AF as well as drinking extra fluids.

Mode switch is helpful to stop the tracking of a fast atrial arrhythmia but it can cause a rapid change in heart rate when it first kicks in.  I prefer being atrially paced so when mode switch switches me to ventricular pacing for the duration of the arrhythmia I certainly experience some unpleasant symptoms like breathlessness, fatigue, weakness, lightheadedness, chest discomfort due both I suspect to ventricular pacing and to the atria being in AF.   We lose the extra atrial kick when in AF which would normally contribute to cardiac output, helping to push the blood to the ventricles and around the body.  AF is so irregularly irregular that even if slow episodes get through to your ventricles they can cause symptoms and mode switch may not be triggered until heart rate is fairly high.  Ask your EP what heart rate will trigger your mode switch?  Mine is set as high as 170 bpm but I expect your CRT system is programmed differently to my dual chamber pacemaker and it will be helpful for you to get your EP to explain just what has been set up when you see him next week and whether Rate Response has been turned on?   

Rate Response

by toniorr11 - 2022-09-06 12:04:43

Thanks for your replies. 

I think I'm still in AF because I still feel breathless and can feel the pounding in my chest. 

Last week they said that they had turned Rate Response on and there have been moments when my heart rate has increased but it's not the same as when I'm not in AF. I can see how it might be AV dissynchrony. Having AF episodes is certainly not as "seamless" as everyone in clinic has implied. Gemita: I definitely feel all those things..chest discomfort breathlessness,light headed etc I'm not sure if vagal manoeuvres would work when I've had an AV node ablation. Does it work on the Atria too?

I thought they said it would trigger at110 but I could be wrong. It's hard to remember everything. My husband is coming in with me next week so that's better. 

I still feel better than in a fast ventricular response AF so I guess thats a small mercy! 

Reverted to normal paced rhythm now.

by toniorr11 - 2022-09-06 12:51:52

So it's flipped back now into*normal" rhythm. Heart rate is up around 80ish. Can't feel my heart at all. This is such a wierd thing! So it must be back in DDDR 

Anyone know how long your pacemaker stores information for? I'm away from home and can't access my home monitoring system and I wondered if the techs would be able to see this AF episode or is it now lost? 

How long?

by AgentX86 - 2022-09-06 13:02:17

That information will be stored until your next in-person interrogation, if not longer.  If there is so much happening that the PM runs out of storage, well, something has to go but it'll have enough information by then, one episode won't matter.  The reason I say "in-person" because the remote monitor  cannot modify anything in your PM.  To do so would be a security hole that none of us would tolerate.  This can only be done with a near-field check (the hockey puck).

You may be breathless exactly because of they dyssynchrony.  Your atria are fibrillating, not helping the ventricals (fighting them, in fact). The ventricles are doing their job but aren't completely filling so you feel the difference.  I don't feel this because my atria are in constant flutter so would do absolutely nothing, ever, so a mode switch wouldn't make sense.  I'm always in dyssynchrony so got used to it the first day (what a relief!). I suspect that the more often your mode switch and the longer you're in VVI mode, or the opposite, the less you'll notice it and the better you'll feel all around.

 

AgentX

by toniorr11 - 2022-09-06 13:07:09

I just edited my last post actually.... I've just flipped back to DDDR. I didn't feel it switch but the pounding stopped. HR is around 80. 

So glad that it stores info. I'd like to know what they see. Thanks for the reply.

I wondered if this is what you have constantly and I'm so pleased that you got used to it so quickly. Do you notice it at all...ever?

Glad you are in normal sinus rhythm now

by Gemita - 2022-09-06 18:38:54

Toni, sorry I have been away from home today visiting the family.  Thank you for your private messages.  Yes yes yes, I am bone tired too after an episode of AF because being out of rhythm = poor blood flow to all our organs including the brain so we can get brain fog as well.  I feel exhausted after AF, sometimes for hours or longer depending on the length of any episode.  Many members have also confirmed this, so we are not alone.

It sounds as though you had a nasty episode of AF today from your symptoms and if you can record the start and finish times of the episode for your next in clinic visit, you may well find it has been stored or perhaps even recorded on an internal ECG.  When I had a symptomatic episode of multi focal atrial tachycardia/AF, lasting for hours during a Covid attack in April 2020, the episode was recorded on an ECG which my technician sent to Medtronic for analysis.  I only got feedback because I kept a diary note of this episode and specifically asked for details, so it was quickly located during an in clinic visit, so please keep diary notes.

I am glad you felt less panicky today, that is a sign that your heart rate/arrhythmia is under better control.  When you get those settings optimised for you, you should feel your AF even less Toni, so don’t be too disheartened.  It will and is getting better.

Vagal manoeuvres are always worth trying and having had an AV Node ablation doesn’t stop these from being effective.  For instance when you triggered your AF this morning rolling onto your left side, if you had tried a different position or a vagal manoeuvre immediately AF started, you might have stopped the episode before it took hold.  I have often stopped my episodes in this way, but it takes practise, experimenting and knowing what works.  

I am glad your husband is accompanying you next week.  Two heads will be better than one when you see your cardiologist/EP.  Yes AF with a fast ventricular response rate is a nightmare to have but you seem to have got this under firm control now.  Me too with my beta blocker.  Hope you sleep well and have a better day tomorrow xx

Do I ever feel it?

by AgentX86 - 2022-09-06 22:59:09

No, there is no mode switch so can't feel that.  I suppose I may feel the lack of atrial "kick" but I'm without it all the time so there isn't any change to feel. I'm always in flutter but, again, that never changes and my electrical system is disconnected so it doesn't propagate to my ventricals.

I can understand why you feel the mode switch.  It must be like changing gears.  My transmission is locked in Drive.

There are some things that are really difficult, like pushing a wheelbarrow up even a short hill or more than one or two flights of stairs (goes down quickly from there) but I think that's a rate response problem. Rate response thinks I'm just walking, when I'm doing a lot more work than that.

Rate Response

by toniorr11 - 2022-09-07 04:04:12

AgentX: I'm feeling a bit overwhelmed with variables today. I can definitely understand what you are saying though because after mode switch I must be in the same mode as you with my pacemaker. I don't think they have my settings right for after mode switch because I felt discomfort whereas this morning in DDDR I can't feel anything except normal, for a change.

However after mode switch when I went into AF it was better than AF with RVR so I guess I have to adjust. (I feel like I'm talking in a different language!) 

Gemita:. I was absolutely wiped out and just went to bed.  I tried the vagal manoeuvres but nothing was instantaneous but who knows....it did convert a while after. I can't take beta blockers easily because I have asthma and I can barely breathe... I certainly can't walk very far. And none of the other rate control drugs seemed to work in A&E and I think I had them all 🤣 digoxin, Verapamil in ever increasing doses and a magnesium infusion. Nothing worked. Amiodarone did work after a month.....I think that's why I've got the pacemaker. I truly hope you're right when you say that it'll get better. I'm cautiously optimistic with a tinge of fear that it won't be lol. 

I think I am the most neurotic member atm for which I truly apologise but I'm eternally grateful that you are all here helping me through this because it's harder than I thought it would be. I think part of the problem is that I can't access my cardiologist with any speed. Changes to settings happen so slowly but I shall keep pestering. Next Wednesday will be interesting when I actually meet the big boss and get some answers and help. 

Have a great day or night everyone 🙂👍

You could …

by Gemita - 2022-09-07 05:52:55

Toni, remember you or your cardiologist holds the trump card to controlling this.  You can always turn off the atrial lead to disconnect totally the atria from your ventricles (as really intended by your AV node ablation), to see whether you feel better during a future AF episode or any difficulties with mode switch.  No harm will be done by trying this and you can always switch atrial lead back on if no noticeable difference is gained.  I would even be so bold as to suggest this to your cardiologist next week?

You have a Rolls Royce of a system set up but perhaps it is too complicated and needs to be simplified, especially since you have already had an AV Node ablation which should be more than able to control your AF and keep it firmly where it belongs?

Understanding

by toniorr11 - 2022-09-07 08:39:29

Thanks Gemita. I think I understand your comments. 

It'll be interesting to see what happens. I guess it is trial and error and that isn't what I was expecting nor what I was told. Tres naïve! 

Trial and error

by AgentX86 - 2022-09-07 12:30:28

Welcome to the trial and error club.  That's seems to be the pacemaker club motto. I hope you have an EP (didn't read your prior posts).  If not, you need one ASAP.  If you just have a cardiologist and he thinks this stuff is unnecessary, you need an EP. If a EP is telling you this, you really need a different EP. It's possible that your system is so complex that he really doesn't understand it either but even a simpler setup needs help tuning for optimum performance (settle for no less).

Anyone with a system as complex as yours is going to take some real tweaking to get everything right.  Not even an EP can predict the settings that will make you feel right.  We're not all the same and we don't have the same lifestyles so any sort of prediction is impossible.  Trial and error is all we have.

My case is a lot simpler than yours.  I only have one dimension to take care of, rate response.  You have at least two, mode switch (detection, switch on, switch off), and rate response in both states.  This is going to be really tough because you have be in the right mode to test the settings for that mode. If a doctor thinks this is simple, wow! ...just WOW!

OTOH, if they can get it right, you'll have the best of both worlds.  I'm not convinced, though, but wish I had the chance to try.

You know you're wired when...

You run like the bionic man.

Member Quotes

I had a pacemaker when I was 11. I never once thought I wasn't a 'normal kid' nor was I ever treated differently because of it. I could do everything all my friends were doing; I just happened to have a battery attached to my heart to help it work.