Sick sinus syndrome pacemaker - British Heart Fou...

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Sick sinus syndrome pacemaker

Maisie23 profile image
12 Replies

Hi, found this community and hoping I get some advice.

I had a dual chamber pacemaker fitted end of August due to SSS tachy/Brady syndrome.

I expected to be 'fixed', and although the syncope episodes have stopped, I still feel very faint, palpitations , fatigue and chest pain and nausea from time to time.

I started back at the gym as was told there were no limitations now and to continue as normal.

How come I don't feel better? Is this normal? My pacemaker is set on demand, to 60bpm. I have had no advice or support since having it fitted. I tried the pacing clinic however they just said pacemaker is working fine and were of little support.

I am not on any medication. Prior to pacing Bisoprolol made symptoms worse so was stopped.

Can anyone give me any advice please?

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Maisie23 profile image
Maisie23
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12 Replies
Sina-6491 profile image
Sina-6491

Yes I think the fact that you are feeling faint and not on meds. Could mean you have other medical issues such as Vitermin D, Thyroid, Diabetes, Blood pressure, Diet issues, Are you sleeping well? Could there be some anxiety issues that you weren't aware of?

They said your pacemaker was working well and it was fine, so

that aluminates' that possibility.

Maybe you do need some kind of heart or blood pressure related meds now as they would have a different effect now to when you took them before the pacemaker was fitted.

The fact is, you are feeling unwell, confused and unsupported, so you should really be going to see you Gp with a written down list of your worries, for reassurances.

You can also book for an appointment to see your surgery nurse. She will be more than happy to chat about any worries you may have.

And of course the advisors' on here from the BHF always give great advise. You can call and talk to one of their nurses Mon/Fri.

Last but not least, the guys on this forum are fab. Many of them would have exspireanced your Simpsons after having had a pacemaker fitted.

Most of us have exspireanced the dizzyness, feeling faint and confused at different times. So I guess we all know where you are coming from honey.

Hope you are feeling less confused, upset and unwell soon.

Hugs Jo xx

Maisie23 profile image
Maisie23 in reply toSina-6491

Thanks for your reply.

I don't feel anxious about my pacemaker, more annoyed that at my age I'm having one!

I just expected to feel back to the 'old me'. I am very active and fit usually. No one told me what to expect and there seems to be no one to talk to, which is why I posted on here.

Have spoken to my GP, however they were supportive, but couldn't give me answers. 'As not their speciality'. I do generally have problems with low blood pressure, and am drinking as much as I can to keep this up.

Maybe I will call BHF as you suggested, thank you x

I had the same fitted five weeks ago for the same reason. I too am still feeling quite poorly on some days as I was before so I have felt very disappointed as expected to feel normal again. I have been told that it is working properly apart from ectopic beats which may mean I have to have medication too. My GP has sent me for a chest x Ray and said if necessary he will refer me to a respiratory consultant as I am still having issues with my chest. I too really hope I feel better soon

Maisie23 profile image
Maisie23 in reply toHeatherForanSmith

Thanks for replying.

Sorry to hear that you are still feeling poorly too. It is such a disappointment, when like me, you were expecting to be better.

I still have tachy episodes and ectopic beats, but my GP seems reluctant to do anything until I hear from cardiologist again. From what I understand, it's accepting that we still have the condition and this is something which will be ongoing. The pacemaker is only to alleviate some of the symptoms.

Hope you feel better soon x

Weejenny profile image
Weejenny in reply toMaisie23

I’m so relieved to hear someone else isn’t feeling as well as they expected. I had my pacemaker fitted in April. I think you’ve summed it up with the pacemaker its only alleviating some of the symptoms.. I still feel my heart rate slow at times. I left the clinics feeling like I had no idea really what was wrong and not really knowing what to ask. I’m not medically minded and don’t understand a lot of what is said I’d like it explained in layman’s terms, this would help a lot in reassurance too. It’s quite shocking to be told in three weeks time you will be fitted with a pacemaker 😥 I feel in the clinic you don’t have the time to ask questions as they are so busy too. I’d rather a more informal chat with the physiologist. take care jen x

Maisie23 profile image
Maisie23 in reply toWeejenny

It appears that you feel much like myself. I feel that I have been 'abandoned' almost. No explanation of what to expect in short or long term. My cardiologist is there 'to advise' my GP, the pacing clinic rush you in and out and don't listen or explain as they are so busy. I understand that it's all 'routine' for them, however for us it is something new and unusual.

I am a health professional so do understand terms used, however feel that we all deserve a little support and understanding.

Good to talk to some others going through the same thing, began to feel I was a bit of a 'freak'.

Hope you're well, take care x

sam295 profile image
sam295 in reply toMaisie23

I feel just the same the pacemaker was fitted end of April and I dont feel much better am still passing out with no real reasons apart from could be low BP and they dont seem to have any treatment. I too have been made to feel a bit of a freak for daring to ask questions and wanting some help.

I hope you keep well and hang in there xx

Shoshov profile image
Shoshov in reply toMaisie23

Are you not offered rehab after your procedure. I find rehab a real lifesaver. Hope you feel better soon

Maisie23 profile image
Maisie23 in reply toShoshov

No, very often once the pacemaker is fitted, there appears to be little support.

I am now 10 months post pacemaker, and do feel better. But a big part of it is learning how to manage on going symptoms , and knowing your limitations.

sam295 profile image
sam295 in reply toShoshov

no rehab offered

possum profile image
possum in reply toShoshov

Never offered rehab. Was told recently that it's not available in my area.

You too thanks

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