Hi, had a dual chamber pacemaker fitted back in July 2022 following AV node ablation.Now have HF, told by HF nurse possible cause may be due to the pacing of the R/H chambers causing strain to the L/H as it needs work harder
Had symptoms of HF since being paced, HF just confirmed in the last week through echo, bloods, symptoms
HF nurse has written to EP to see if L/H side pacing will help.
Anyone else been in the same boat?
Hello 
Sorry to read what you have been through and the diagnosis
It seems no one could relate or maybe it got busy on here and your post might have been overlooked which you could always try and post again and see if someone sees it x
Thanks be kind for your reply Be kind, I must be the only one 😐 x
Hi Nomis21Not sure if this is the same thing but it sounds similar. My husband has an ICD,not a pacemaker, however his ICD does also pace him at 50. Because he was having runs of VT's his bisoprolol was increased to help control these but because the bisoprolol reduces the heart rate this caused his ICD to pace him more, an increase from 3% pacing to 50% pacing within 3 months. However that amount of pacing of the ventricles, the lower chambers of the heart, isnt good as it damages the heart & can cause HF. As my husband already has severe HF the bisoprolol was immediately reduced, he then had a VT storm which resulted in him having an urgent ablation. His EP has said they may insert another lead to his ICD to pace him from atria, upper chambers of the heart) as you can be paced 100% from the top chambers without any damage to the heart.
Does this sound similar to what you've experienced?
Hi lezzers,
I'm not sure, my 2 lead paces the right hand 100% dependant. My pacemaker is set at 70bpm always struggled with breathlessness, tiredness, weakness and chest discomfort since my surgery.
HF clinic stated I may need a extra lead to pace left hand side due to desynchronization.
Hi Nomis21 , I had a dual chamber pacemaker fitted in 2017 as an emergency due to complete heart block but I didn’t improve and after 2 years I was told I was a mystery! I then changed cardiologist and hospital as I wanted to know what was going on and I was very breathless, felt ill and couldn’t do much. After many tests I was told that my ventricles were beating out of synch with each other as a result of the pacemaker and was diagnosed with heart failure. I then had a CRT-P implanted which has the extra lead and although it was gradual, four years on I am very much improved and only have occasional breathlessness. The heart failure has disappeared and apart from the odd off day, I no longer feel like a total invalid. I do hope you get the accurate information and diagnosis you need.
Hi Fantasy,
Sounds very similar, I have a dual paced pace maker and suffer everyday since the procedure with breathless, fatigued, dizzy spells, weakness, struggle with walking, stairs, hills etc.
My EP said it was post surgery anxiety!! Attended anxiety therapy was also referred to the asthma copd clinic (both ruled out) been on various meds in the last 20 months, various tests and up until last January i still had no diagnosis.
I like you asked for a second opinion but still didn't get anywhere.
Wasn't until I seen a new doctor at my GP surgery last Jan that things started moving, he requested a BNP blood test and another echo at my local hospital.
BNP was 3x higher than normal and echo showed left ventricle systolic disfunction with dilated atrium, my EF was <40.
I was referred to the HF clinic who have just recently put me on Ramipril and have suggested desynchronization of the chambers may be the cause (also still in AF)
Also have a Cpex examination coming up at end of month requested by my EP.
It's been a battle over the last 20 months not just with my health but constantly chasing the health professionals and if it wasn't for the young Doctor at my GP surgery I'd still be no wiser.
Now that the HF specialist nurses have suggested my issues could or "more than likely" be down to pacemaker desynchronization I'm hoping there is a way forward to getting my health issues resolved.
Really pleased things are better for you, i feel I'm on the same journey and going by your account gives me hope for the future.
Thank you I’m glad I was able to help. Yes I agree about the similarity, I had all those symptoms too, although I usually looked OK and I don’t think anyone really listened to what I was saying about how ill I felt and how restricted my life had become. I too was told my symptoms were down to anxiety and the pacemaker was working perfectly so it couldn’t be that. I felt dismissed but later found out that pacemakers can cause issues like this so I got a second opinion from a cardiologist with an interest and expertise in this area at the big city teaching hospital ten miles away. He repeated all tests and added in new ones and they showed a high BNP rate and left ventricular systolic dysfunction too. I was never told my EF though I was not considered ill enough to be referred to an HF nurse or clinic. I think over the years it took to get even an initial diagnosis and have a pacemaker fitted, my body had got used to operating on a much lower level of oxygen! I take a cocktail of drugs including Ramipril and feel they all help me. There is also a presumed diagnosis of microvascular angina, though over the last few months the symptoms associated with this (pain down left arm on exertion and breathlessness/heavy feeling in chest) have mostly gone away too. I’d never heard of CPEX tests but have now looked it up, it sounds very useful for identifying lots of issues. It can take a long time to get to the bottom of things, I’d seen many doctors, been to a&e a few times and been sent to the medical assessment unit at our local hospital several times too without anyone finding out what was wrong. These days we have to advocate for ourselves and keep insisting that although the pacemaker is strictly speaking working, it is not working for me or improving my systems! The breakthrough for me was getting across to the second cardiologist just how restricted my life had become, especially in my job. For example, I couldn’t walk and talk for more than a second or two without becoming completely out of breath and was exhausted after walking a very short distance. I’m very glad they are now looking into desynchronisation for you and hopefully, if you need a different pacemaker, they will get on with it for you.
So many similarities, I was also told the pacemaker is fine so it can't be that, one time I got a face 2 face appointment with the Ep not long after my procedure, he found it odd that I was struggling and said "he had done what he was supposed to do and if I had ongoing issues I should go see my GP" I was kinda miffed with his comment as I told him I could feel the symptoms in my chest and that the symptoms became apparent right after my surgery.I have also read that pacing on side of the chambers can cause desynchronisation and quite surprised no one picked up on this earlier.
Do you mind me asking which hospital you got your CRT-P inserted?
HF/ Cardiomyopathy and going strong!
Ankle swelling not related to HF
Still in HF?
Bisoprolol 1.25mg (And HF worry)
Some Good News for Those With HF
