AV NODE fighting PACEMAKER

[Alphakiwi]

I have just this last week been changing from Diltiazem to Carvedilol..My GP decided to do this as i was having such a terrible time with palpitations. The changeover was done by increasing the carvedilol by half tablet at a time to 2 tablets but dropping the diltiazem during the changeover. Now the palps mostly in the form of large thuds in my heart have largely dissapeared but i am in full timE AF which feels very tiring compared to the thumps. Night time is the worst and keeps me awake and i notice that my HR is low at 59 to 60 mostly which is what the PM is set at.

.My Question is it possible that my AV node is fighting the implanted Pacemaker ?

[Chinkoflight]

Hi, you may want to look back at some of my correspondence. I had a two lead ICD with an atrial pacing lead fitted in March and by the time I was home it was thumping me when I lay down, and pacing me randomly too. The pacing function was set at 60bpm to counter my natural bradycardia which was further lowered because of the bisoprolol medication. In addition to the pacing and shocks I felt awful with dreadful postural hypotension every time I moved from sitting down.Day after day of trying to contact the hospital and eventually after three weeks they called me to say the remote monitoring had picked up a fault and they called me into hospital. They switched off the atrial pacing lead and instantly the problems resolved themselves. Astonishing.

I then waited four weeks before I was called back in with a caveat to expect a lead revision because of lead failure! I was told on the day the atrial lead had detached and was floating around! The lead was removed and a new lead put in place. I understand this was a slightly longer lead, extra stitches were used to hold it in place and a special pouch was put inside the cavity to hold the ICD box. Infection risk is high in a lead revision hence the pouch and antibiotic infusion through the cannula as well as a massive wash down pre op with antiseptic etc.

My view is you should be checked out for a lead failure or a significant change in your issues and need for the pacemaker, and you should do this as a matter of urgency. There is a reasonable risk that a lead failure can physically worsen your heart condition.

You need peace of mind!

My lead revision has been a success and apart from the healing process again, I'm not longer aware of the box in me.

[Alphakiwi in reply to Chinkoflight]

Hi Chinkoflight, thankyou for your most welcome and informative reply.I had a 2 lead pacemaker implanted about 3 years ago. After i was home about 1 week i started getting big thumps in my chest presumably heart.and was seen in pacemaker clinic where the technition turned off something and it atopped giving me the thumps.

I have been mostly on diltiazem since but i started becoming really uncomfortable with it so was tried on something else with no real success so now have just finished changing over to carvedirol. Now i am not getting so many thumps but i am flat out in afib. Seems i cant win. Drugs dont seem to work well for me ,thats why this pm was put in as they were going to do AV node ablation. I had come to terms with that but the cardiologist i waschanged over to decided to keep trying me on drugs, so here i am after 3 years of up and down misery.

By the way they dont send you home with a home monitor here unless a ICD like yours is in. I have bought a monitor and awaiting it to arrive so i hopefully can get answers from that.

Colin

[Chinkoflight in reply to Alphakiwi]

Hi Colin, I have to say that sounds exactly the same as I had. Did they take another x-ray to compare the lead positions with the x-ray taken after the original procedure? I didn't say that in the 3 weeks of hell period and no response I presented myself to the A&E and an x-ray was taken. Although at the time I wasn't told the result subsequently when I went back in for the revision then I was told the lead had detached.

In A&E I was told it was possible if the lead had failed then the arrythmia pacing taps I was feeling might be about the sensing and pacing being balanced and needing adjusting. The EP technician was being supervised by a colleague so the conversation bypassed me!!! But I did pick up that the sensing lead was working okay but not the pacing function hence switching the lead off or down to 30bpm that is effectively off . At the time they hadn't seen the x-ray.

My hospital is a general hospital and the only procedures they do are devices and stents. It's a small team and they mark their own homework!!!!

There are issues in the regulated management of pacemakers and ICD's because of this. Leads are not returned to manufacturers, lead failure is a generic term used to describe any problem, including incorrect fitting!!

To be fair lead detachment is not uncommon as an early fault but it really does need remediation. It may be time for a second opinion. Your GP might help - are you UK based? This is the basis of my answer.

My understanding is that I don't think it's possible for drugs to cause the ICD/pacemaker to act erroneously. Your heart works as it does, including possible arrthymias, ectopics etc. The device electronics should be sensitive and programmed to ignore these and only step in when needed. Whatever is happening is electrical and your device firing. If the lead is detached and firing it may be in an area where it's also setting off the muscles around the heart say in the diaphragm which is why you feel it. This is what was happening in my case.

It's frustrating but you really do need to get this sorted, it shouldn't be happening.

Feel free to message me anytime. There aren't many people on this forum who have this sort of problem as I found out when I posted a similar question.

[Alphakiwi in reply to Chinkoflight]

Thanks for the info chinko. Today i finished the changover from diltiazem to carvedilol and so far i dont like the results. Ive started geting the thumps etc more often again. My GP kept asking when i will see the pacemaker clinic again .This was a couple weeks ago. As it will be another 3 months she suggested i keep a diary which i might add i have been doing for several years on and off. After i got home i had a look at my pm card and it has phone number to ring xo i did and got an appointment for 24th june. Aparrently they get info that tells them about the leads etc. I have not had xray specifically for checking the leads ever but i have seen this year a xray showing the leads. The worst thing for me at this time really is fatigue im experiencing which i put down to the new meds . Im getting heart thumps as i write this. Its hard to explain these things but the more shallow thumps cause to involuntarily to suck in. By the way i live in New Zealand

[Alphakiwi in reply to Chinkoflight]

Hi there my afib friend I just woke up to Massive thump in my ticker along with a lousy headache, breathing feels short and sort of hot and stabs in my feet also feeling itchy, so i guess lots of side effects. I also just walked out to the kitchen to get water which was more of a stagger..Tonight was my first night on the full dose of 2 carvedilol and today is triday and i dont feel i should carry on with this over the weekend. I will phone the doctors office and tell them . Im not sure it will be wise to go off them cold turkey but maybe half dose etc.

Its almost 2.30 am. I will see how i go for the rest of the nihht.

Colin.. ps what do you think.

[Chinkoflight]

Hi, it has to be a chicken and egg question! My resting heart rate is SR Bradycardia with ectopics and before my heart issues surfaced was around 40-42 bpm. The ICD had pacing function and the Dr's decided to utilise this to increase my resting HR to 60bpm. Quite apart from the detached lead issue that was causing me thumps when I lay down, in daytime I was inflicted with postural hypotension, breathlessness causing me to get extreme dizzy spells as soon as I got up from a chair. I described this to the Dr as saying my body was fighting this imposition . I also thought the ectopics were setting up additional pacing taps from the box. Not the thumps but very aware heart palpitations on the left side. The thumps were right sided and diaphragm based.They switched the lead off and all the symptoms disappeared.

Now the new lead is in they have made the decision not to increase the base heart rate and to leave me to regulate this naturally. I'm not sure whether they acknowledged the possibility that the artificially increased HR was weakening my health.

I really can't help on your drug regime and the impact. I'm on Edoxaban anticoagulant (thinner), a statin, and a very low dose bisoprolol beta blockers 1.25mg. The latter is to control/reduce peak HR.

Although I do have paroxysmal AFib, the device and pacing is because I had a dangerous left ventricular tachycardia which caused me to collapse. Should this happen again, the ICD should give me a big shock.

When the first device was fitted and I was getting thumps and pacing runs that I could feel, I thought this might be the new normal. But I found out that I shouldn't expect this and as I have said the device was faulty or more likely was poorly fitted and the lead detached or was never properly attached.

It's good news you now have some appointments. I will be interested to hear the outcome.

Nigel

[Alphakiwi in reply to Chinkoflight]

Nigel, .my HR overthe 24 hrs of monitoring 3 years ago was 32 to 90. That was part of the reason for pm.Saw the nurse tiday who got the duty doctor .She has said it is ok to go off the carvedirol tonight but see my doc next week. Suggests taking half dose tonight etc.

Col