maintenance dose

[Electricblue1]

Do you think staying on a maintenance dose for life is a good thing, love to hear other peoples opinions. I feel so disappointed that I can’t come off all my meds. I’ve been told the scarring in the left atrium is what’s causing all the problems. Shame there is not a treatment out there that fixes the scarring. I’ve upped my dose but am so worried about weight gain and hair loss which is what I had before.

[jeanjeannie50]

No, I don't think it's a good idea to stay on a maintenance dose of drugs for life. However, we AF beggars can't be choosers unfortunately. We can only put ourselves in the hands of the experts who give advice after looking at our heart test results. I still live in hope of someone stumbling on a permanent cure for us.

Jean

[Electricblue1 in reply to jeanjeannie50]

oh that would be nice if there was a cure. How have you been lately, hope you are well.

[jeanjeannie50 in reply to Electricblue1]

I feel amazingly well, thank you. Don't know if it's the result of strong antibiotics when I was ill a few months ago, or the change from Metoprolol and Flecainide to Bisoprolol. I've been able to do things I haven't done for years. Like cut the back lawn and not need loads of breaks, after I did this I cleaned the windows! I may have turned into wonder-woman. Just hope it's not short lived!

[Electricblue1 in reply to jeanjeannie50]

that’s good , nice to hear you are doing good.

[Autumn_Leaves]

You have to be realistic about your risks, that’s all. It might not be idea but there’s no such thing as a zero risk, and now you have AF you need to accept that it comes with its own set of risks. Unfortunately there’s no way of getting away from that fact. Remember that it’s always a choice, but choosing the no meds route may come with a greater risk to your long term health and longevity. How big that risk is will be determined by your age and any other health considerations. You can no longer compare yourself with your 20-year old self, sadly none of us here can do that. You have to be realistic about yourself in the here and now. You could always talk this over with your GP, consultant, or arrhythmia nurse if you have access to any of them, or even the BHF helpline if you don’t. It’s always better to make an informed decision so your priority should be to get informed — using reliable sources eg qualified people, not some bloke on the internet. You’ll feel more empowered by making your own decisions from a position of knowledge.

[Electricblue1 in reply to Autumn_Leaves]

thank you, talking on here to everyone really helps. I miss my old healthy self that’s all. It’s a shame that nothing can be done about the atrium scarring.

[Singwell in reply to Electricblue1]

Its hard isn't it when something is a 'done deal'? I definitely relate. I've felt similarly about staying on medication for the rest of my life and I think it's easy to talk ourselves into a negative place if we cannot come off the drugs - that it means we're not 'better'. But if a maintenance dose stops the AF and allows us to get on with our lives then surely that's better than coming off the meds and suffering every time we get an episode? Especially if that happens frequently or lasts for hours. I've thought long and hard about this. The conclusion I came to was this: I'd rather stay on a low maintenance dose and NOT have episodes than come off the pills and get AF kicking off randomly every few weeks (which us what used to happen). Of course I'd rather be off the meds, but if my ablation hasn't stopped AF altogether then I'm prepared to stay on the pills. My QOL will be better.

[Electricblue1 in reply to Singwell]

thank you that helps a lot. It is all about mind set isn’t it. I just felt so good for months then it’s playing up again. I wonder if another ablation would actually do any good or if I would be making it worse.

[Singwell in reply to Electricblue1]

Yes I understand how that feels. My thyroid is problematic at present and it feels like now 'another thing'. But I do think it's about mindset. I had to say to myself- I can see the evidence, I have it, I've done my research, now what's my best option to feel as well as I can and get on with my life? Sometimes that means taking medication. I'm a great believer in supporting those decisions with lifestyle choices - the food choices I make, sleep patterns, exercise, getting outside etc. And in my case at 66 digging my heels in and saying no to working long hours in our home run business. The other half is younger and has had to adapt. Keep asking yourself- what is my best option?

[Electricblue1 in reply to Singwell]

All that sounds sensible. I do try more than ever now to be happy and positive, I think when you have a health scare it really does wake you up. I look at other people now who abuse their body and think how stupid they are .

[Mitcham]

I had my first CV in 2011and a further four ablations, latest one Nov 2021. I have been on meds throughout. The explanation I H have been given is if (when) AF returns it is safer. Which seems fair enough to me. My only side effects have been weight gain and low blood pressire. To counter eggs t the weight gain I hopeful strengths based exercise and my GP told me low BP is better than highAs with everything to do with AF each individual is different what works for me may not be suitable for you,

Good luck

[Electricblue1 in reply to Mitcham]

thank you, I eating very healthy and am strict with it and I fast for 13 hours most nights so 🤞I can keep this up but hair loss is harder to get on top of.

[DawnTX]

which med?

[Electricblue1 in reply to DawnTX]

I’ve upped the bisoprolol but if that’s not enough I will have to up the flecainide as well and that causes flashing in the eyes if my dose is too high.

[lovetogarden]

I don’t love the idea of being on any kind of med for life. But if it means a better quality of life (and longer life!) than without it, well I’ll do it. Have been on meds for rheumatoid arthritis for close to 20 years now. What a difference those have made in my life. I hate taking all the heart meds, wish for some miracle to get off them, but like the RA meds, I’ll do what I have to do to survive.

[Electricblue1 in reply to lovetogarden]

yes I am coming round to the idea that it’s best. Since going back on my evening dose I have noticed a difference. It is better than feeling ill .