Breathing when sleeping

[Nomis21]

Hi, had a 2 lead pacemaker fitted 2022 after pace n ablate for Wolff Parkinson's White but went into pacing induced cardiomyopathy so had a upgrade to a CRT pacemaker 4 weeks ago.Still early days to notice any benefits but noticed my AF is worse, it's more noticeable now than before the upgrade and I struggle with my breathing now while sleeping, wake up needing to take deeper breaths, it's as though I've not got enough air, never had this beforehand or maybe It just wasn't bad enough to notice.

Feel totally washed out every day, no energy, SoB, dizzy and have to go to bed every afternoon.

Feeling like this with the persistent AF and now breathing problems when sleeping isn't making me feel positive about the CRT upgrade which I thought would be a benefit going forward.

Been on meds for heart failure since the start of this year.

At 53 I'm starting to think things won't improve and this is the new norm.

Anyone else with similar issues?

[CDreamer]

I had CRT pacemaker initially implanted in 2018 and had a problem with the RV lead catching my diaphragm and therefore affecting my breath, especially when in certain positions. It was rectified and 6 year s on it I have experienced the benefits. We are all different of course and yours may be a completely different issue but it needs to be investigated. The CRT pacemaker stopped my AF almost immediately and although I still have a few episodes the burden is less than 2%.

May I suggest that you contact the Pacing Clinic as soon as possible and ask that you go for an urgent appointment so they check what is happening.

Best wishes and hope you get to the bottom of what is happening very soon.

[Nomis21 in reply to CDreamer]

Have a appointment at pacing clinic in two weeks for CRT check, my pacemaker clinic is two and half hours away.Rang the clinic yesterday to ask if my issues are being picked up on the recorder, and they confirmed it is showing AFib but didn't mention any other issues.

Not sure what the reporting route is, whether the clinic informs the EP of me still being in afib or if I should ring the EP's secretary explaining the issues for further advice?

[CDreamer in reply to Nomis21]

I guess every area has a different procedure but in my experience the pacing clinic look at the monitoring and if they see anything amiss they contact the EP. Might be an idea to call the EP’s secretary anyway to report your exacerbation of symptoms.

I would also go see your GP to rule out other possible causes.. Have you had someone listen to your chest recently?

[Cliff_G]

Sounds to me like there's simply not enough blood being pumped round to circulate oxygen. As others have said, see if you can get the pacemaker checked and adjusted asap.

[Nomis21 in reply to Cliff_G]

Thanks Cliff, will do.

[Buffafly]

You should definitely see someone - those symptoms don’t sound right. Maybe your HF meds need adjusting? I expect you already sleep propped up - I don’t officially have HF but can’t sleep lying flat and I recognise the ‘not enough air’ feeling. I have had some weird things going on this year including exhaustion and breathlessness and when I eventually had the echo my cardiologist reluctantly ordered it turned out I had extra fluid around one side of my heart, so quite possibly if there had been more previously it would have interfered with my heart action. A pericardial effusion can be caused by heart procedures. But hopefully your heart is needing rest and recovery time and will pick up in time.

But don’t just sit there panting, complain!

[Nomis21 in reply to Buffafly]

Thank buttafly, I have an appointment at the pacing clinic in two weeks and have spoken to my cardiologist secretary today, fortunately there was a cancellation later in November so I have managed to take that slot. Will just have to wait until then but obviously if things get worse it will be a&e.

[Madelyn-8613]

sounds like sleep apnea to me. Have y tried elevating your head to sleep.