hi all I had a pacemaker (crt-p) fitted last week and am supposed to have an ablate after4 weeks.
I’m not so sure I want it now as I feel my heart jumping and jittering more than I ever do and wish I hadn’t gD it done. I did have it checked and the cons and electro physiologist said it’s working fine.
I used to feel ok when I was sat but now I don’t.
has anyone else had this problem. It’s putting me off having the sinus nose ablation as it’s irreversible.
Never feel mine.
Did you have sinus node ablation too Bob? I wonder if different makes/types of pacemaker suit some people rather than others.
I hope other members here that have a pacemaker will reply and advise you stargazer.
Jean
AV node not sinus node and no not at this stage. Even when I've had it tested I felt nothing. Remember it is plugged in to the right side of the heart not the left where all the trouble is. Still learning!
Yes, I guess it would take some time to learn all about the pacemaker. Has it made things better for you so far? I know CDreamer is delighted with hers. I guess they take quite a while to bed in and feel comfortable.
It is apparently set at 60 Jean in case my heart slows down as monitor results showed it pausing at less than 60 and I had a few presyncope moments last year. Had one last week for a second like being punched in the head which was odd but by the time I checked pulse was normal so perhaps it is working.
The bulge ruins my svelt lines but at least I don't look like a secret service agent with a gun onder my arm. Very occasionally get very slight niggles.
you’ve been peeping Bob. Mine is planted so near my left armpit every time I move my arm across the body it is moved sideways!
I had mine implanted 19FEB 2021. I still feel it every day. It's a 2 lead pacemaker. I am set at 50 and 120. I would think after all that time that my body would absorb it but no. I told my EP that I have fat everywhere but over the pacemaker. I am not fat..but pleasantly plump...according to me! He just laughed!
mine sticks out too. And you can see the leads going up from certain angles. Still at 79 I’m not likely to be wearing strapless dresses
Haha, I hear you. I'm 75!
We had PM for different reasons Jean - there are many different types with many different algorithms.
Some basic information here Jean.
bhf.org.uk/informationsuppo...
Thank you for the link, very interesting.
"Remember it is plugged in to the right side of the heart not the left where all the trouble is."
That depends on how many leads it has.
mine has three
when they tested mine I nearly jumped off the table! A bit scary
thank you jeanjeanie
I only feel mine if my HR drops below the set limit now around 60 and then only occasionally.
Did you have 2 or 3 lead PM? When my 3 lead was put in it wasn’t placed correctly and came free and was catching my diaphragm which felt like the most violent hiccups you could imagine. Physiologists isolated that lead until I had a revision - which I have to tell you was not pleasant. Putting in a PM is LOT easier than taking one out.
I hope that someone told you that a pacemaker will not stop AF for most people and even after ablate of the AV node you will still feel your AF bumping away but it will give you a steady pulse so you should be much less symptomatic.
Best wishes
CD how could it touch your diapragm? My leads go into the sub clavial vein and thence into my heart so not possible. I have a great hard loop of cable from the box to where it disappears by my colar bone.
I have 3rd lead which attaches to outside of LV. It detached & caught diaphragm- evidently it’s not uncommon. You will only have 2 leads which I also have but to get to the LV the 3rd lead goes outside the heart muscle.
mines not detached as they checked to see if it had moved but apparently I have to put up with the hiccups ( which they didn’t tell me about)
yes they did but I didn’t expect the symptoms to be worse. One of the reasons they’ve done this is because I’ve been v breathless and they reckon it will help that
hopefully the hiccups will stop soon.
btw I have. 3 lead
Had pm fitted end of September Av node ablated 17/11. I have pulsatile tinnitus so can hear my heart beating in my head all the time. Having ups and downs at the moment but luckily more ups!
so sorry to hear that and thx for your reply
The sinus node ablation is to stop you feeling the jumping and jittering. Your heart may be a bit upset by the pacemaker insertion as we are all different but once the link between your atria and ventricles are cut your atria can be as jumpy as they like but won’t affect your heartbeat. When you’ve had it and all settled down come back and tell us how you feel.
thanks
it took 2 1/2 hrs to fit the pm and the leads instead of 30-60 mins as there was a problem with a vein.
I get hiccups and they said it was because the 3rd lead is near my diaphragm. I just worry if this isn’t ok now do I want the sinus node ablation.
Before I only felt my heart when HR was high or v low otherwise it was ok. Now I feel it nearl all the time, v disconcerting
you will get used to it I assure you. 30 minutes turned into two hours for me to but it’s all behind us now.
thank you, it’s just been unexpected so I’m worrying about the next step. Anyway I hope it does settle
They call it twitches but feels far more than that. The physiologists should be able to tone it down so keep going back to them if it doesn’t stop.
I've just gone through both the pacemaker and a.v. ablation procedure and am now two months on from the completion. It has not been without some discomfort but no major AF episodes and peace of mind when I go to bed that means I actually sleep. I am so glad I took the plunge and had both procedures done now.
Hi stargazer,
I had a pacemaker fitted 5 years ago. I originally had chronic AF so had a primary vein isolation done, after about 6 weeks I was still having AF heart rate on 180. I was admitted to hospital and was having intravenous amerodion, after a few days they did a cardioversion and my heart rate was in 22 had a bit of trouble waking me up. It was then decided the pacemaker was the way to go. All was fine with that but all the medications I had didn’t stop the AF. My specialist suggested the AV node ablation but as he kept telling me it was a last resort I was a bit wary. In the end I had in done about 6 months after the pacemaker. My pacemaker runs 24/7 and I’m set at 60 bpm. When I go for my yearly check they always tell me that I’m still in AF, but thankfully I can’t feel it since the ablation.
When all this happened they said I had moderate tricuspid regurgitation. I didn’t realise at the time that pacemaker leads go through the tricuspid valve, now I have sever regurgitation and the right side of my heart isn’t working properly, which I understand can be because of the valve. It seems obvious to me now that putting leads through an already leaking valve would only make it worse. But can’t do much about that now.
As far as the AV node ablation goes it has been fine for me, it stopped all the trips to hospital. Best of luck to you whatever you decide.
I completely understand your concerns. I've had AF for 8yrs and permanent AF for over 2½ yrs and the medication was only helping for part of the time and the days that it wasnt, began impeding on my life more than I wanted. I didnt feel like I could plan ahead in case I had an "off" day, which happened on quite a few occasions when I'd have to cancel.It was a big decision to go down this route but I'm so glad that I did, as I feel I've got my life back .
I had the pacemaker fitted 26/9 and the AV node ablation on on the 7/11. The pacemaker alone didnt help the AF,( I wasnt expecting it to)and I had to continue to take Diltiazem. Since the ablation ,I've stopped the Diltiazem and so now only take apixaban which obviously I'll need for life but otherwise, I'm medication free and my digestive system feels better already and any puffiness has gone.
They originally set it at 80bpm to allow my heart to settle down and left it for a month. I had completely forgotten what it felt like to have a "calm" heart and my energy levels returned almost immediately.
After a month I had to return to the clinic to have it all checked and they put it down to 60bpm. I felt nothing at all just fascinated by the technology and the ability to do everything remotely. I'm going to have it tested in 6mths and after that yearly, all done remotely, so they'll call me to tell me that they're running the test but I wont have to go in for it!.
I have a Medtronic pm and have the app on my phone, which means that all of the time that I have my phone with me and have bluetooth, it is connected to the hospital and so any problems would automatically be transmitted and of course it will continue to be monitored when I'm abroad and i dont have to take a monitor with me.( other than my mobile) It also allows me to enter symptoms and keep exercise records etc.all very clever.
I've had no runs or bumps at all and my heart is a steady 60bpm, with the top rate set at 140bpm to allow me to exercise.
I have queried with the clinic that I felt even better with the heart being a little higher so I'm popping back in tomorrow to see if putting it up a little might be an idea. They were also able to tell me from looking at how much battery I had already used, that it wouldnt need changing for 14yrs 2mths!I was really surprised by that.
I cant tell you how much better I feel but I honestly didnt realise how rotten it was with the AF symptoms for so long, I'd completely forgotten what it felt like to have a calm heartbeat. Now I do realise that I'm still in AF but what I "feel" is a steady ,regular beat.
I hope my personal experience helps you but of course it still has to be your own considered decision whether to go ahead or not.
Wishing you well and hoping that you will soon feel a whole lot better.
was so hoping you’d come on and tell your success story
Di
As usual, it is very interesting to read all the replies to the original post, and discover the different reasons for — and experiences with — a pacemaker. My experience with the pacemaker is similar to Nannysue1’s experience. I too have a Medtronic dual chamber PM…but for different reasons. While I have had Paroxysmal AFib for 3 years, I had an ablation 2 years ago, and rarely have Afib episodes. However, I did have a low H/R — around 40 at night — and began getting a lot of ectopics beats at night, making sleep hard. So they put my on a 30 day monitor, and found out fairly quickly that my heart was also pausing at night, sometimes 6 to 8 seconds. So a few days later, I got the pacemaker.
That was three weeks ago. The low rate was set at 60, the high at 130. It was odd getting it tested the day after the implantation, seemed much like getting your car tested after it was fixed. Anyway, I am still getting used to. I can’t ‘feel’ it doing anything, but my low H/R stays around 60. It is also rate responsive, so when I am exercising or walking up and down steps or moving suddenly, my H/R changes quickly in response. That was a bit odd at first, but I am getting used to it.
It is a huge relief for me — and for my wife — not to worry about pauses any more. And I think I will like the increased responsiveness over time. I also apparently had one 2 hour episode of Afib that they discovered in the device clinic after my two week check…but I never knew it, and I always felt it in the past. Overall, the only downside is that it skews some of my Apple Watch health measurements (like HRV). A small price to pay….
Please explain what you mean by "I realise I'm still in AF". You feel it somehow or you realise bc they told you? thank you for your story. I am considering it as also in permanent AF for 2,5 years, and episodic AF for about 20 years now. So sick of it all. And my cardiologist tells me heart failure might even start AFTER PM! So he is not a fan
I had a Boston Scientific 2 lead CRT-p implanted in October 2019. The Consultant talked about ‘pace and ablate’ but decided against the ablation at the time. I am in permanent AF, in HF and paced at 70. What with the pacemaker and all the meds I am on, I rarely think about it except for occasional niggles where the leads are I think. At my last echo my ef had gone from about 35% to 54% so something is working and long may it continue! Hope yours settles down. It is early days yet.
I have a 2 lead and the base is set to 60 and the max is set to 150, so when the AF kicks in and goes over 150 bpm the PM takes up the fight and brings it back down to 80. It does take time for it to settle down my normal rate was 47 dipping below 35 on occasion. No it does not stop the AF unfortunately. I still get the aching head and take my Kardia reading and it says 80bpm but I can feel the battle that is taking place.
thank you so much for all your replies. I feel that maybe my heart will settle a bit. See what happens
hi, I had pacemaker inserted Dec 21, within 2 wks got what they called pacemaker induced taccacardyia not very pleasant. But that could be picked up by pacemaker unit checks. Needed ablation in march 22 to sort it all out. Fingers crossed that seemed to have worked.
I am not a doctor, however, I suspect the feelings you have are the pacemaker doing its job. I had a very successful abIation many years ago. Before the ablation I had many SVTs, Atrial Fibrilation and many visits to A+E ending with multiple Lacunar Infarcts. I had a recorded 308 bpm. I was to have had a pacemaker but the ablation was so successful, it wasn't fitted. I wish you the best.
thank you
I am happy to agree with all the others that a pacemaker and av node ablation has made my life so much better. I am in permanent a fib but can’t feel a thing! Only know this because they tell me that when I go for a check up.
Yes i had that so the PM Tchnician turned everything off except the part that starts up when my heart rate goes under 60. Its ok now. I dont think you need all responses on until the node has been ablated. As for me it turned out i didnt need the node ablated and that was 1 year ago.
had a pacemaker since 2018 these days I have no AF between pacemaker checks so stay with it
Hi . I had the same procedures (CRTP and AV node ablation) five years ago. All I can say is that, after many years of arrhythmias which eventually couldn’t be controlled by drugs any longer and, doing 148 non stop for almost two years, when the PM was finally switched on , it was like resurrection! It was such a relief, My baseline is set at 80bpm and I can do up to 120bpm when exercising. I attend physiology yearly now . I rarely think about it. It doesn’t rule my life any longer. For me it felt like having a new heart. Hope this is helpful and best of luck
thank you so much for your reply. I’m worried about the ablation because I felt worse after pacemaker fitted, it felt like my heart was fighting itself even when I was still and I thought I’d the ablation doesn’t work I’ve nowhere else to go. I only used to feel it if my HR was v high or v low. I’m in permanent afib. Sometimes my heart feels as if it’s jumping in jelly if that makes any sense.
Hi again. I did reply straight away but somehow it doesn’t appear to have gone.
I do understand exactly what you mean. I was worried that I would be aware of what was going on in my atrium as well as being in sinus rhythm again. As soon as the AV node was ablated I was aware of a very slow Heart rate and was in a little discomfort due to the decreased perfusion, but as soon as I was switched on it was like I used to feel when I had short periods of sinus, but it just carried on no matter what I did , lifting, exercising, turning in bed etc., I was told after the ablation I had an escape route of 40bpm. My heart rate increases and decreases as normal . It is a difficult time when faced with these decisions, for me it was realising that if I did nothing my life would just continue in a state of hyper agitation and napping two or three times a day. Not being able to plan a life was the worst. I decided that a life without any more failed ablations, regular cardioversions and constant fatigue was by far the best option. Maybe you need to look at ALL your options and realistically see how your life would be if you carry on without any intervention and, alternatively, how it would be if you went ahead, having made an informed decision. I was fortunate a family friend is a Consultant cardiologist and Electrophysiologist and was very supportive. Get a second opinion, do some research and decide what is the best way forward for you. Most of the larger City hospitals in the UK have websites for patients faced with the prospect of pace and Ablate procedures. Good luck and keep in touch.
thank you so much for your reply. The reasons you give are exactly what I’ve been thinking and then I got second thoughts. I’m still in permanent af but my heart seems to have settled a bit. I can’t feel it jumping as much. I thought it would be ok immediately. The hospital has checked my pacemaker and it’s working ok and the leads haven’t moved.
Not sure what device you have , Medtronic and Boston Scientific etc., but nowadays they are very robust and can take quite a lot. I was told to take it easy for the first 3-6 months whilst the leads are bedding in. After that my confidence increased and I just got on with things. For me it’s been life changing not having to think about arrhythmias any more. I met another patient during one of my yearly checks who had the same procedure as me but two years earlier. She is now seven years post AV ablation and still working. It’s important you feel it’s the right thing for you. Do you have two or three leads?
I don’t know which pm I have but I know it’s a crt-p with three leads. I think it’s working as I’ve had it checked. I was just told to be careful for 4 - 6 weeks, not lift anything heavy and not to lift my arms above my head
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