I'm new here and hoping to connect with other people who have sick sinus syndrome. I am 44 which I understand is quite young for SSS. My consultant says the only treatment option is a pacemaker but held back from recommending one due to my age, as I'd likely need several over the course of the rest of my life. He says it's up to me to decide! I'm finding my symptoms are getting harder to deal with and really limiting my quality of life (I have two young children and run my own small business). But I'm not sure what to do given that the consultant was not 100% that I should have a pacemaker fitted.
I'd be grateful to hear from anyone who might have been in a similar situation.
Thank you.
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KMD1
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Hi , I was diagnosed with heart pauses and tachy brady at the age of 47. My cardiologist first said I was too young to have a pacemaker as I’d need lots of procedures to change it over the following years . However as my heart pauses were getting longer and more frequent and because of my symptoms he had a discussion with another cardiologist and they both agreed that a pacemaker was the only option . My symptoms were quite worrying , my youngest child is 9 and I was concerned about my heart pausing when I was alone with her which has happened and I blacked out for a few seconds , luckily I was sat down at the time . The thought of that happening more often was a scary thought . I can honestly say that I’m so glad I had a pacemaker , I no longer have the blackouts and I don’t have the worry about being alone with my daughter and blacking out . I was home the same day , I was in quite a lot of pain , more than I anticipated after the procedure but once I’d recovered from the procedure I was so thankful I’d had it done . Can you have a chat with your cardiologist about your symptoms and how you might be in the future with having SSS and ways it could affect you . I hope you get some answers from others on here or your cardiologist , if you’re on Facebook there are excellent support groups , I joined both . One is a pacemaker support group just for ladies and the order is a uk group. Both groups are so supportive and there are many members that know how you’re feeling and have probably had the same experience and heart condition you do . I continue to reach out to these groups for support as I have ongoing problems . Sorry I’ve rambled on , I’m only a message away if I can help in anyway. Take care xxx
Thank you so much for sharing your experience with me - there are a lot of similarities so it's very reassuring. So far my pauses are not so long that I black-out, more "pre-syncope" and lots of light-headedness and brain-fog. I am worried about driving with my children though. My youngest is 7 and I'm exhausted all the time so it makes everything hard day-to-day. I do need to understand more about how the SSS might progress. I don't really want to wait for black-outs to start happening but the thought of a pace-maker procedure every 8-10 years doesn't appeal much either! I have another appointment scheduled but not until mid-May which feels like a long time to wait, though I do understand that I'm probably not in any danger in the meantime. Anyway, thank you again for your support and the FB recommendations too - I really appreciate it. Kx
Hi there, I had a pacemaker as a result of three ablation for tachycardia which resulted in sick sinus syndrome. I was 45. My cardiologist said the same as yours, that he didnt like putting a pacemaker in at that age but again he had no choice as my natural heart rate would not rise to cope with exertion. I have had another two since then and there is about 66months left on my current battery . It definately gave me a much better quality of life. I'm 69 this year . If you are unsure, ask for another opinion. All the best , let us know how you get on.
Hi KMD1, also 44, and had a pacemaker fitted last September for sick sinus syndrome. I'm in a slightly different place to you, because I was nearly completely asymptomatic - I had two episodes of syncope in the middle of the night after a 24-hour stomach bug and that was when they picked up the issue, but otherwise I was feeling as fit and well as I ever had in my life - aside from dizzy spells, which I am pretty convinced were actually associated with the anaemia they also discovered.
It sounds as though at least you're being given the option to think about things rather than feeling rushed into it, which is great - I was taken into hospital for a week and a half and not allowed out until they'd fitted my battery!! As a result I have really struggled psychologically with accepting the whole thing (still not even slightly there). I think because of that, I would say definitely take the time to think about it carefully and talk in depth to your cardiologist about the implications. It's really important to come out the other side feeling that you've had all the information and been able to consider all your options.
I'm assuming that they've checked out all the other possible causes of your dizziness too, so there's no secondary issue/co-morbidity that could also be contributing? Have they suggested an implantable loop monitor at all? This was something my consultant mentioned at the very last minute before my op (thanks dude) as a possible just-in-case step, to gather more data on how my heart was actually behaving. It might not be a sensible thing to do in your case, but it's something I'm aware can be done.
In terms of battery life, I also felt a great sadness about the multiple box changes, but my hope is that battery tech will keep improving, and maybe by my next change they'll be able to stretch the next one out even longer; I had a checkup on Monday and was told my projected battery life is 14 years at the moment, so more than the 10! The PM is kicking in 40% of the time at the moment.
I second the Facebook group recommendations. I haven't found the one for women yet (so if someone has a link I'd love it!), but Pacemaker UK is really friendly and full of people willing to offer advice & tips & just general emotional support.
Good luck with it. V happy to chat more if you'd like.
Thank you so much Floss 43! I'm sorry to hear about your experience - it must have been a huge shock..... I've had symptoms on and off for four years but have struggled to get to the bottom of them despite lots of tests, monitoring episodes, being sent to A&E by my GP after every ECG, etc. Since November last year the symptoms are now persistent - pretty much daily - and impacting much more on my quality of life which is making me feel quite down. I had a Zio patch on for two weeks last month and that's what picked up the SSS, finally. I'm relieved to know what the problem is but I must admit I was not expecting the only treatment option to be a pacemaker! It sounds like syncope + SSS means you have to have a pacemaker but because I'm not passing out, it's kind of optional and obviously there are risks associated with the procedure, especially as we might need a few fitted over time. That's great about your battery life projection though.
I have been tested for thyroid issues and general bloods which didn't find anything else. I'm otherwise fit and healthy. Nobody has mentioned a loop monitor yet. It's so helpful to talk to people here so I am ready with questions for my next appointment in May. I'm wondering if it will be brought forward because I had a 24hr tape again earlier this week and they nearly kept me in because it immediately picked up sinus pauses. We'll see...
I'm so grateful that you replied and shared your story with me - thank you again.
I know that at your age, you must be feeling rather upset about needing a pacemaker, but let me reassure that having one really is a lifesaver - and it takes away all those unpleasant symptoms. I have a pacemaker for heart block, and I didn't realise how close I had come to having a cardiac arrest, until I looked up the symptoms.If you decide to go for the pacemaker, I'm sure you won't regret it. When I was leaving the hospital, the senior nurse told me I would have a new lease of life, and she was right.
Hi. My husband had had palpitations for months and his ECG suggest sick sinus syndrome. He is 40 and we have a 5 week baby and a toddler. We feel a bit upset as we dont know much about it or how serious it is. Would be great to link up with others who know about the syndrome and what you went through etc.
He has been referred to a cardiologist as urgent for further investigation and i guess to check whether it is that or if there is something else - no idea how long that will take on the NHS at the moment!
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