Dilemma

[mark1987]

I am in a bit of a dilemma.

I collapsed at work about a month ago and was taken to hospital. I then blacked out 3 more times in hospital within 6hours. They caught the final one on an ECG and it showed that I was having pauses of up to 20 seconds. I was kept in hospital for over 2 weeks on a constant ECG and with the exception of that 6hour period nothing happened and I felt normal.

The reason why I was kept in for so long is that the hospital didn’t really know what caused it and there was no space at the local specialist cardiology centre along with various other issues. I finally got to the specialist centre and they said I have a electrical issue with the control of the sinus node (strong vagel tone) most probably due to that I am extremely fit and race bicycles competitively.

This is the confusing bit.... they gave me a choice. I could have an ILR fitted and be monitored for a few months and see if it happens again and evaluate. They recommended this due to my age and that the issue has only occurred during a single period so far. The other option was to have a pacemaker fitted knowing that it would barely ever be used and it would be a back up just in case. I went for the ILR, purely for the fact that I couldn’t make the decision and it seemed like the sensible option for the time being. They said that I can have the pacemaker at any time should I need it or would be able to live a normal life with one.

So this is my quandary. I have had the ILR for a few weeks now and I have been fine. Although I have done no exercise, otherwise my life has been normal (ignoring the fact that I can’t drive) and I have gone back to work (desk job). The problem I have is that I want to be able to go back to cycling and maybe racing over the next few years as for me this is a normal life. I feel that if I get back to a similar level of fitness to before that the risk of the Sincope returning will increase and I will be back to square 1 or worse, the drs tend to agree with this.

So my dilemma is whether getting a pacemaker just as a back up so I can return to much more of a normal life to me is worth the risk of having the pacemaker at my age and the associated risk of replacement, failure etc.

Any advice from people with similar experiences is much appreciated! Sorry for the very long post!

[MichaelJH Heart Star]

This is purely a personal opinion. In your situation I would have a pacemaker fitted as blacking out in the wrong place at the long time could have life changing results. There are plenty of people who have lived with pacemakers for decades with no problems bar an occasional battery change. As regards competitive cycling be guided by the cardiology team.

[stevejb1810]

I can't help feeing that you should be asking these questions of your cardiologist rather than us. It seems to me that you already have some of the info you need by the doctors agreeing that you could put yourself back to square 1 with your current set-up, so I think you need to have the detailed conversation and make the decision with the experts (which, with the best will in the world, isn't us!).

[mark1987 in reply to stevejb1810]

Cheers. Just to clarify I have had these conversations with the cardiologist and plan to continue them. I am just trying to explain my situation and see if anyone else has a similar experience to get some further information.

[Kristin1812 Heart Star]

Hi, Mark. Not me, I have other heart issues, but a friend had the v same as you, and found it v hard to believe she needed a pacemaker. She had very occasional long gaps in heart beats, and had unexpected falls, etc.hurting herself, and making life difficult for her.

My point is that she is now a changed woman, since the pacemaker.doing amazing trips abroad, and fitness, back to her previous self, but without this unexpected, scary feeling hanging over her.

I have to admit she’s v much older than you, but fitness was great, and very important to her. I like having the old ‘her’ back!

Not sure this is any help, but v good luck with your decision.

[HeatherForanSmith]

I had a pacemaker fitted 5 weeks ago due to sick sinus syndrome (slow heart rate). Feel better already but obviously for different reasons once it is in not too scary

[Funky_Uk]

Hi... I kept collapsing and blacking out, I was only early 30's and mine didn't get caught at all when I was rushed to hospital. I looked fit and healthy and was told there was nothing wrong with me for years. I had the Loop Recorder fitted in the end and when I collapsed again it showed I had pauses of 30 seconds, they said I had sinus node arrest and asystole and I got a PM fitted, they didn't ask if I wanted one and i've had mine since 2007. Don't know if that helps or not but if you do have the PM fitted i'd think you would be able to drive again if they know the PM would stop you blacking out and it wouldn't really stop you doing anything. My collapses were approx every 9 months and once I'd collapsed it never really showed anything up once I was at hospital. Are you doing no exercise because you you think it might make you collapse again or are you just not feeling well enough yet or have you been told not to exercise? I got told there was nothing wrong with me so I kept going back to as normal a life as possible and just kept hoping it never happened again but I did feel quite ill in the end. Its a horrible situation for you to be in, hope things work out, Tracey... P.S I'm on my second PM i'm hoping this one last for a long time lol...

[mark1987 in reply to Funky_Uk]

Thanks Tracey. Really useful information, it seems like we have similar symptoms. I am pretty much normal until I collapse, it was just 'lucky' that they caught it on an ECG in the end. I am concerned about cycling and about potentially collapsing and falling off etc but time and weather hasn't been helping since I've been out of hospital. Planning to get some exercise in this weekend and build up slowly. thanks, Mark

[Funky_Uk in reply to mark1987]

Hi... Yes it does sound similar... Oh I see yes blacking out and falling off the bike wouldn't be good out on the road, I was thinking more in the gym It all takes time, collapsing is quite a shock and it's a horrible feeling not knowing if or when it might happen again. Take care, Tracey...