New pacemaker - does it get better?

• by Goo5e
• 2014-08-17 07:08:34
• Complications
• 1479 views
• 2 comments

Hi Everyone

I didn't expect to be joining the pacemaker club but here I am. I'm looking for some advice as am having a few problems. To give a bit of background...

I'm 41 years old and have suffered with ectopic beats for about 15 years which were managed with beta blockers until about 2 years ago when they improved to the point I was able to come off the meds.

2 months ago I had an episode with an erratic heart beat with pauses lasting up to 6 seconds and low heart rate - about 38 BPM. These symptoms were completely new to me and I was feeling very unwell. After putting up with them for a few days I went to A&E as was getting quite anxious.

After ECGs, bloods and x-rays I was told I probably needed to get back on some meds but basically was OK and not to worry and was sent home and asked to go to my doc for a referral to a cardiologist. About 24 hours later the symptoms disappeared and all was good.

A few weeks later I got a call from the hospital out of the blue. A doctor said he'd reviewed my tests and was very concerned and wanted me to see a cardiologist ASAP. I went back to my GP who ordered more tests - bloods, 24 hr trace, echo cardiogram etc.

Before the test were done I had another episode same as before so ended up back in A&E. This time the doctor immediately said sick sinus and admitted me. After wanting to send me home again they eventually (after much pushing from me) managed to get the pauses on ECG so moved me to the cardiology ward and was told I needed a pacemaker. It was fitted a couple of days later. This was three weeks ago.

Since having it fitted the pacemaker has fixed the slow heart rate and the long pauses, but in some ways I'm feeling worse.

I now seem to be having issues with my heart rate jumping around. It's most noticeable on inhaling and exhaling. The base rate on the pacemaker is 60BPM. When I inhale my heart rate jumps to 75BPM and then as soon as I exhale I get a short pause then drop back to 60BPM. I guess my sinus rhythm is kicking in on inhale then fails on exhale and back I go to 60BPM. I'm finding it very distracting and difficult to concentrate with my rhythm switching all the time. By the way, my resting heart rate before these problems was usually between 68 - 75.

I also get worse symptoms drinking alcohol. Not much - just two beers or glasses of red wine. It causes my heart rate to jump around and an increase in pauses. I'm also very tired much of the time and get breathless quite easily. Also I get very light headed for a few seconds when I stand up. Almost to the point of feeling like I will faint.

I went back to the pacing clinic last week as was worried. They found a problem with one of the wires being too sensitive so adjusted the settings and said it should improve. If not then to go back and they will try tweaking the rate. They said at the moment I'm being paced 88% of the time (atrium) and 0.2% (ventricle). They said the tiredness and aching in my chest were likely just due it only being a few weeks since having it fitted, but that everything looked fine.

I'm really worried that the pauses and heart rate changes are with me forever now. They are affecting my quality of life and the thought of not being able to have a drink and socialise like I used to is really getting me down. I feel too young to have to miss out on the lifestyle I was leading up until the pacemaker. I'm otherwise fit and healthy. Walk loads, cycle loads including to work. I'm back at the pacing clinic for my one month appointment next week so will talk to them about all of this. Hopefully I can get back to some kind of normality, but am still coming to terms with it all and hoping this isn't how I will be from now on.

Hopefully some of you have been through the same and can offer some words of comfort and advice?

Thanks for reading.

Mark