Heart beat and sleep

Hi had a box change 1st June unfortunately my top A lead wasn't working but surgeon decided I didn't really need it, so just turned it off. 

I feel OK but I just can't sleep the PM was changed to 50Bp it had been at 60Bp for the last 23years.they say to make my heart work harder? As soon as I try to sleep I get the flop flop feeling and if I get to sleep I wake up with a strong beat my PM kicking in I think. I want to go back to the hospital but don't want to look a fool, so can anyone tell me have they experienced this. I am desperate so tired actually crying right now and feel stupid coz it's not me


Quality of sleep

by Gemita - 2020-09-14 07:42:55

Dear Maureen,

It sounds as though you are getting ectopics from your lower heart rates.  When you are feeling stronger I would find a new team of doctors to take better care of you.  You need a second opinion about your top lead anyway and you should not have to go through the distress this is all causing you.  

I also found that when my heart rate was below 60 bpm, it would allow all sorts of skipped beats, flip flopping to occur because clearly my heart needed more power to beat smoothly and regularly.  A higher heart rate (70 bpm) has made all the difference for me.  In the very least I would ask courteously that your pacemaker be turned back up to 60 bpm without delay, explaining that you cannot function at the lower rate without it impacting on your quality of life.  Why have a pacemaker if it doesn't help you.  I would keep going back until they turn it back up and once it is where it should be, get a second opinion.

In my opinion, tiredness and upset will do more harm that switching your pacemaker back to 60 bpm.  

Maureen, I do wish you well.  It is so miserable having to fight to get results.  I am also in the U.K. and it has been an uphill struggle for me too at times but the battle was well worth it

Higher pacing rate can give better sleep

by crustyg - 2020-09-14 09:03:12

Hi Maureen: You already know my thoughts about the blase way that your EP doc has said 'oh you don't need an atrial lead'.

As far as lower rate is concerned, I found that going from my natural resting rate (about 38-40BPM) to 50BPM with my PM allowed me to sleep better.  Instead of 38 kicks in the chest (I sleep on my left side, and my heart is enlarged), I was having 50 much more gentle beats per min, and much less disturbing.

In your shoes I would have demanded a second opinion by now.  For some reason, a lot of UK EP docs seem to be living in the 1950s - 'You get what I say, and you should be damn grateful for it'.  Some of the nonsense I've heard on Professionals Only webinars about NHS Cardiology services post Covid-19 has been astonishing, and quite disgraceful.  It should really shame those who are patient-focussed, and up to date in their attitudes and skills and techniques, because they are being dragged down by their peers with such out-of-date approaches.  'You don't need an atrial lead'  == 'I can't be bothered to replace your atrial lead', as though the evidence against longterm VVI pacing isn't clear (pace, Agent).

Go to doctor

by rolson - 2020-09-14 09:40:50

I have what I call weird beats when my arrhythmias kick in usually  when my meds need adjusting. I have PM for bradycardia but also have tachycardia so take meds for arrhythmias.  Doctor says I can pace wherever I want and I chose 60bpm. The flop flop may be arrhythmias you need meds for. Go to a NEW doctor  and have a monitor to check fir arrhythmias.  Hugs

VVI pacing

by AgentX86 - 2020-09-14 11:35:27

I don't think (I am not a doctor) the problem here is VVI pacing, rather skipping in and out of V-only pacing.  In other words, in and out of synchrony.  I have no A/V synchrony and am paced 100% VVI. It's fine for me. It's all I have. My atria were causing all my problems so I'm better out of A/V syncrony than I was in, when every burp of my atria was telegraphed through to my ventricles (since I was in permanent flutter, that's a lot of burps).  However, I'm not in and out, constantly. I've had similar issues and that was a bad time.  I couldn't sleep for weeks on end.  BTDT

IMO, any EP suggesting that the atrial lead is unnecessary and VVI pacing is just peachy, should turn in their license. Is he saying that you should never have had an atrial lead?  Was it malpractice to implant one in the tirst place?  Or, is it now OK to suffer where, somehow, it wasn't before?

Remember, much of the reason pacemakers are used is for quality of life reasons.  NIH has to have someone better. Find him.

Heart beat and sleep

by maureen.coxsey - 2020-09-14 12:44:38

Thanks everyone I have a appointment 11.30am tomorrow and am hoping I can get this sorted, I have gone back to my old team at a different hospital so I am hoping for a 2nd opinion 

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I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.