Have I made a mistake

[Remos]

Hi - I just recently had a Pacemaker fitted and am wondering if I should have taken the option of monitoring first.

18 Months ago I had a cluster of syncope episodes over 10 hours where my heart rate dropped and I lost consciousness. Because it hadn't happened before and my heart rhythm remained regular throughout it was thought just have been a fainting episode. Then last week it happed again and I was taken to hospital where I was fitted with a pacemaker to address what is thought to be 2nd degree heart block.

I don't really feel I was in any fit state to make any type of decision in hospital and just "went with the flow". I am now feeling very low and panicky that I've done the wrong thing.

[bantam12]

If you have 2nd degree block and you were passing out with the pauses then no you haven't made a mistake, they wouldn't have given you a pacemaker unless they were sure that's what you needed.I have it as well and wish I'd had my pm earlier.

[beardy_chris]

No, you haven't made a mistake. Even if you don't really use your pacemaker much it should help to keep you conscious. My pacemaker is used less than 1% of the time but, on the whole, I prefer to remain conscious!

[Hidden in reply to beardy_chris]

Ditto. I am just 'SO' happy to have mine - Regard it as my little Friend!!

[Palpman]

If you at home and your heartblock progresses to complete heartblock then you may meet your maker without a pacemaker.

[Ageingfast]

Medics do not fit pacemakers unless they consider it to be essential. You made the right decision. Once settled, you will be free from the concerns that an event could attack at any time.Colin

[fantasyfanuk]

Hi Remos. I had a pacemaker fitted for complete heart block as an emergency and “went with the flow”. But if I hadn’t I might not have been around much longer. It was truly the only option at that point and maybe it was the same for you. It did take me quite a while to get used to having the pacemaker but that was infinitely preferable to the alternative! Hope all goes well for you.

[juanitamc in reply to fantasyfanuk]

Hi, Do you mind me asking how long you have had your pacemaker for your complete Heartblock.... I also had one fitted in May 2020 for a complete Heartblock and I have had to go on anxiety tablets as I get panic attacks thinking that something is going wrong.... Mine happened on our first lockdown of the virus and went into hospital with first degree block and progressed to complete Heartblock.

[fantasyfanuk in reply to juanitamc]

Hi, it’s fine to ask me anything you want. I originally had a dual chamber pacemaker fitted in September 2017 and then didn’t get much better. After changing to a bigger hospital and having lots of tests, I needed a three lead pacemaker so had that done in December 2019. I was much better until autumn last year and it is thought I have micro vascular angina. I am much improved now after they increased the isosorbide dose and can walk a couple of miles without pain or being breathless. It’s taken quite a while to get to this point! It must have been difficult for you to be in hospital with things as they were and it is very scary suddenly having to rely on a piece of equipment but you definitely get used to it over time. I found a short course of counselling extremely helpful. Let me know if you want to ask anything else.

[Smileyian]

I think you have to ask yourself, would the Cardiologist have recommended that procedure and fitted a pacemaker if he/she had not considered carefully that this was the best option for you. I often have HR in med 40's but thankfully have never fainted.

[Buddy00]

Hi Remos , sounds like a similar story to mine. I collapsed while driving, was diagnosed with AV blockage and a hereditary problem of non compaction. I hadn’t been feeling unwell prior to this ,so was a massive shock to be told I needed a dual pacemaker. Like you I had no time to prepare mentally. This was in October 2020 , I was left feeling shocked and very vulnerable but am pleased to say I’m now used to having the pacemaker and actually feel very luck that the pacemaker is looking after me. As for the monitoring option, the nurse said don’t waste your time because the cardiologist wouldn’t recommend a pacemaker if you didn’t need it.

[Bonnie58]

Hi Remos, I expect you are feeling a bit shocked at what has happened. It does take a while to get used to having a pacemaker. I am 6 months in and feel incredibly lucky to have it. Think of it as insurance, it is there if you need it, no more passing out! Allow yourself time to adjust mentally and physically, you will get there. Elaine.

[Peignoir]

Same for me - I was being monitored for fainting and was told it was postural hypotension. Nothing picked up on heart monitoring or tilt test. Just thought I had to get used to it and accept limitations as it got worse and faints more regular. Thankfully in Costa Coffee when the bad turn came, had third degree heart block and pacemaker fitted about four hours later.

No time to think with medics rushing everywhere and I wasn’t allowed to move - clothes cut off me!

It took a good few months to process emotionally but it has changed my life (as well as saving it!) and there is so much more I can do now - including playing properly with my grandchildren!

[Everyoung]

Hi did the specialists tell you why you were getting heart block or fainting episodes. Are you usually fit and well.

[Palpman in reply to Everyoung]

The reason for most patient's arrhythmias cannot be determined by any test. They just happen.I've had all the available tests to find the cause of my heartblock to no avail.

Heartblock causes low blood pressure due to obvious reasons and this can cause fainting.

Last night I was watching 24/7 A&E where a patient fainted with a pulse of 6 bpm. He had a dual pacemaker inserted.

Another had a pulse of 20 and had numerous fainting spells. Pacemaker inserted.

Yet another had fainting spells with a pulse of 32 and had a pacemaker inserted.

This one worries me as mine also drops suddenly to 32 bpm. No fainting though.

This makes me question the existence of the natural emergency AV Node pacer that should kick in with complete heartblock.

[Everyoung in reply to Palpman]

Ok. The reason I ask is that when it was happening to me and was recorded on a reveal monitor the cardiologist called it ventricular standstill. It was only later discovered that I had sarcoidosis which was causing the arrhythmia, the cardiologist changed the standstill diagnosis to heart block which is caused by sarcoidosis. This is why I ask how is your general health.

[Palpman in reply to Everyoung]

I understand that sarcoidosis can cause arrhythmias but it is also associated with physical symptoms that I don't have. I am 65 and quite healthy but do suffer from severe fatigue.

Ventricular Standstill can only mean a standstill for a few seconds or it will be total death in my view. Is this not the cardiologist way of explaining heartblock as it is also "heart standstill" not so ?

[3Squirrels in reply to Everyoung]

I also experienced heart block in late 2019. Symptoms were feeling faint and breathless when exerting myself even mildly. My heart rate dropped to around 35bpm. After the usual heart attack tests drew a blank I was eventually diagnosed with sarcoidosis and had a CRT-D fitted. I think the protocols for diagnosing cardiac Sarcoid are improving and this is leading hopefully for it to be better understood and more quickly spotted.

[Everyoung in reply to 3Squirrels]

Hi did you get sarcoidosis in any other organ, unfortunately it took 3 years and ended up with sarcoid in my lungs and heart . I did manage to receive financial compensation as several practitioners missed it including radiographers reports and the neurologist suggesting sarcoid. I have suffered possibly since 2009 and diagnosed in 2016 my condition has improved but the disease is still grumbling. My cardiologist was honest enough to admit negligence which many wouldn’t have, I have mitral valve regurgitation so he focused on that rather than looking at other possibilities for breathlessness.

[Remos in reply to Everyoung]

Hi Everyoung - I was told that since this had happened before and in both cases I'd been sitting down as opposed to standing up it was unlikely to be a fainting episode and more likely to be heat block so it would be advisable to fit a PC as opposed to a monitor device as it was likely it could happen again at some time. I am a normal fit and well 63 year old.

[Dewson]

I have had a pacemaker for 7 years. The reason given for fitting it was “to prevent sudden death” which it has done so far. I had similar incidents to you over the years. So I suspect yours is not a mistake but a lifesaver for you as mine has probably been for me.

[Alison_L]

Hi Remos. I agree with everyone else - no, it wasn't a mistake. If you don't need it, then the pacemaker will sit there happily doing nothing. If you do need it, then it may just be the difference between life and death. xx

[Remos]

Thank you all for your replies and words of support. I really appreciate each one. It's so reassuring to know that you are all there. Thank you.