Pacemaker Syndrome?

[Coco51]

I am due to have a dual lead pacemaker fitted on Tuesday. I know if it works well it will be a good thing, and many people on this forum have said it's a new lease of life. But I am wondering about Pacemaker Syndrome. I know I have poor conductivity with a long PR interval (318 rising to 400 when on Bisoprolol) which makes it a bit more of a risk for me. Can anyone shed any light on this? My EP put the risk at one in ten and said the answer is to put in another PM lead on the other ventricle.

I have Bradycardia resting HR occasionally dropping to 36 but usually resting in the 40s. Obviously higher in the daytime. I function ok. No real breathlessness or fainting. I suffer from Atrial Fibrillation, have had two ablations and I take Bisoprolol and Flecainide.

I have been for a second opinion, but would welcome news of people's experiences. Forewarned is forearmed!

[bantam12]

I was looking forward to getting my pm but now you've mentioned the syndrome maybe I'm not so sure 🤦🏻‍♀️

[Coco51 in reply to bantam12]

Oh dear. I am so sorry. I did not mean to put anyone off. So many people have told me on Health Unlocked that it's a new lease of life. It's just that with my particular problem - the long PR interval- it is more of an issue. It probably doesn't apply to you. The answer apparently is to put in a 3rd pacemaker lead. I just wondered if anyone had experienced it.

[bantam12 in reply to Coco51]

The risk seems quite high which is not good, my Cardio hasn't said anything about it, to be honest I have a lot of the symptoms anyway !

Don't worry about putting me off, I have to go through with it as there is no alternative, I can't take any meds because of bradycardia and I'm not putting myself through an ablation so pm it is 👍

[Coco51 in reply to bantam12]

Yes I see from your posts that we are in the same position. Flecainide didn't work for me before the ablations. Now it does work thank goodness, but the accompanying Bisoprolol drops my heartrate too low. I get very few symptoms though - slow on hills and occasionally slightly dizzy after sitting. But having to go back on Bisoprolol will mean I still won't have the extra oomph I need for more exertion.

Good luck with your PM.

[bantam12 in reply to Coco51]

Oh yes a bit of extra oomph would be good, I get so breathless just going upstairs 😞

Good luck for Tuesday, I look forward to hearing an update ☺️

[buddy2blue]

I have a duel pacemaker and had a failed ablation done. I’m now looking at transplant as I have no other options left. I felt fab for fab for 18 months with the duel lead pacemaker

[Coco51 in reply to buddy2blue]

Oh dear. Poor you. I see from your profile you have had a difficult life. Your courage is an example to us all. I wish you well and hope you get to the top of the list soon.

My niece had a liver transplant for her congenital liver disease (autoimmune chronic active hepatitis). That was 10 years ago and she is well. It took a while to get the anti rejection drugs right. But it is a success.

[buddy2blue in reply to Coco51]

It’s just my condition I’v always know transplant was on the cards. I’v done well to 36 really. I’m just waiting for an appointment at the freeman hospital now

[Coco51 in reply to buddy2blue]

Yes I realise now and edited my response above. Thought you might be interested to read what I wrote above about my niece above. Good luck!

[buddy2blue in reply to Coco51]

That’s Very encouraging to hear and I’m so pleased your niece is doing well. I know I have a long road ahead and it’s not going to be easy but I’ve won every battle so far and don’t intend to lose this one.

[Disciple5451 in reply to buddy2blue]

Working in hospitals these last 22 years I have met so many patients but u top the lot you r do brave made me d sad o tearful u deserve big hugs I have made my dsy May god bless u x

[buddy2blue in reply to Disciple5451]

Thank you I’m rather terrified about it all but also know it will give me a chance at a normal quality-of-life. As I’v never known what that’s like

[Disciple5451 in reply to buddy2blue]

I’m sure u are I really do hope god gives u a new heart my thoughts and prayers go with u please stay in touch I lije to help if I can

[buddy2blue in reply to Disciple5451]

Thank you very much. I have about 3 months to wait till I get an appointment at Newcastle freeman hospital

[hf54 in reply to buddy2blue]

so sorry to hear this

[buddy2blue in reply to hf54]

It’s ok I’v always known what is to come. Mind not that it makes it any easier

[hf54 in reply to buddy2blue]

I have heart failure at 54 And was incredibly activeI'm just about to retire with what I thought will be long and very active retirement.He really has been a bit of a bombshellBut I'm trying toCalm myself by saying that I'm still on relatively low doses the medicationAnd when they increased I hope to feel much better. I hope you get your heart transplant if that is the right course of actionAnd make a full recovery I really do-Nick

[buddy2blue in reply to hf54]

Thank you Nick. Yes I can imagine that must have been very hard to come to terms with. I’v learnt to just take things one day at a time

[hf54 in reply to buddy2blue]

i hope for the very best for you and i mean that....

[mercmike]

Hi i had bradycardia my resting heart rate was all over the place and probabley had been since birth. When recorded properly over a week or so my heart rate could drop to around 29 Beats per minute and had often stoped for periods of up to 8 seconds. I functioned ok all my life in the early years when i attended the doctors they thought I had mental health issues. The anxiety of attending the doctors would steady or speed up the heart rate so they knew no better.

Anyway the good news! There is a great success rate and it is ultimately a low risk procedure. Im on my second pacemaker which was fitted while i was awake. I not sure how old you are and whether it makes any difference, but the biggest issues for me was not the device or how well it worked more the phycological affects. I was constantly checking my pulse and was aware of any slight tinges or pains that I probabley had all my life. With regard your condition you have already give me the answer with the installation of another PM lead. Iife change my life and outlook and its quite normal to be anxious and nervous, but your alive without it so things can only get better. Good luck

[Coco51 in reply to mercmike]

Phew! That's nice to hear. Thank you. So many people love their PMs but not everyone has such a slow heart rate as you and I do.

I am 68 and gave had bradycardia since I can remember and no ill effects at all. It's the Bisoprolol that brings it right down. So I always wonder about over treatment.

Do you have three leads now and node ablation?

[jc1955]

I had pacemaker syndrome caused by my first pacemaker, if they offer you the biventricular pacemaker I would go ahead as I got severe heart failure and it took 2 years to get the diagnosis!

[Coco51 in reply to jc1955]

Oh dear. I am so sorry to hear that. Poor you. Has that been reversed with treatment or are you stuck with it? Do you know why they did not pick it up at your regular appointments? It is one of my biggest fears and I would like to know what to watch out for. Thank you.

Very best wishes

[jc1955 in reply to Coco51]

Hi they just kept saying my device was working fine, eventually I had an echo scan which is how they found out,yes thankyou I am starting to feel better but am on medication also which has awful side effects ,I dont think I will ever get back to normal as its been 10 months already, I would say that if you feel unwell keep trying until they listen!

[Coco51 in reply to jc1955]

Oh dear oh dear oh dear.... that sounds awful. I hope things continue to improve. At least I have your experience to draw on. So thank you. Preparing to make a nuisance of myself! Bon courage.

[jc1955 in reply to Coco51]

I think it was the length of time I was left that made it a whole lot worse so learn all you can and try to be one step ahead, Hope all goes well

[Coco51 in reply to jc1955]

Good thinking! And thanks again your information and experience has been very valuable to me. ❤

[fantasyfanuk]

Hi, I had a dual chamber pacemaker fitted as an emergency for very low heart rate - it was 38 at the GP surgery and 22 in the hospital. I didn’t improve at all afterwards and two years later after having been told by various doctors that I was merely anxious or unfit, I was finally diagnosed with moderate heart failure. In mid December I had the old pacemaker replaced with a biventricular device and have been very much better since. I was told the ventricles were beating out of synch with each other but this would sort it. Obviously it’s early days but I can walk faster, walk and talk at the same time and can go up slopes without getting completely out of breath. So I guess I’m saying if the dual chamber is not successful the three lead one may well be. I feel like I have my life back, so far at any rate! Best of luck with yours.

[Coco51 in reply to fantasyfanuk]

Sorry you had such a bad time. It must have been very difficult. Glad to hear it's on the way to being sorted. I shall give the doctor who fits mine a (respectfully) probing time before I sign the consent form! At least now I have the ammunition. So thank you.

[Coco51]

Phew. Nice to hear some good news from the same problem. I guess the atrial pacing upwards means it beats ahead of the ventricle which is what is needed Thanks for your reply and your previous ones to my other post

❤

[Coco51]

Clever and obviously what I need.👍

[Dickydon]

hi, all i can say is my dual lead pacemaker has thankfully sorted my heart rate from dipping under 60bpm, but it doesn’t prevent my breathlessness which is due to my aortic & mitral valve that will be replaced later this year; they put the op back with me because of some improvements that have been made to the operational efficiency of my pacemaker.

good luck!

(sorry all lower cases bit lazy)

[Coco51 in reply to Dickydon]

I am glad to hear that it went well for you and sorted out the heart rate. But sorry to hear you have the valve problems. I wonder what they did to improve the efficiency of the PM?

Thanks so much for your reply.

[Dickydon]

thanks coco51, i believed they tweaked the upper limit so the heart rate can go much higher than it was programmed to do.

i’ve certainly benefitted from it. the only negative really, is the hard lump just under your shoulder & above the breast (male) on the upper left side. i get shoulder pain too not sure if it’s the pacemaker causing it or what...

[Coco51]

Good to hear! 👍