Would appreciate some insight and gui... - Atrial Fibrillati...

Atrial Fibrillation Support

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Would appreciate some insight and guidance please.

Frances123 profile image
22 Replies

I have had Lone Parox Afib for about 13 years and have been on 2x50mg Flecainide bd since and apixaban for about 5 years. Was discharged from cardiology about 9 years ago.

For many years my breakfthroughs were between 10 and 18 months lasting anything from 6-48 hours. I stayed home and rode it out. For the last couple of years the episodes have got closer and averaging 4-8 a year but lasting about the same time.

I never knew about taking extra Flecainide and the last couple of times I have but only one tablet extra and usually a couple of hours later when I remembered.

I was cardio averted the first time and then given Flecainide but have never looked at ablation or anything since. Annoying as Afib is I thought with infrequent episodes and being ok in between I was ok.

It was reading people’s responses to the post yesterday about someone asking whether to have their ablation or not that It made me think and have given it such a lot of thought. Is it about QOL, possible damage to heart, progression etc?

Had breast cancer 20 months ago but for the last year Ive not felt good a lot of the time. Hard to put finger on what but ectopics/PACs are a lot more frequent as well. I also have acid reflux and aware of the vagus nerve connection. My BC drugs cause quite a few side effects too. How much the Afib/ectopics are to do with that I don’t know. Also with PPIs for 12 years I know can cause lots of problems.

I just don’t know where to go from here. Tomorrow I am having a private blood test for FBC, B12&6 & magnesium deficiency and thyroid function. My gp is aware of symptoms and put ectopics down to the acid. He knows I have Afib breakthroughs but haven’t told him they have got closer yet as I was assuming it was BC drugs. Did have annual FBC in Feb and everything was fine. I mentioned B12 before but he poo poohed it. I’m also aware B12 deficiency can cause a lot of my symptoms.

If blood tests are fine then it’s either drug side effects or Afib. Stopping BC drug is not an option so don’t know how I would find what is causing the symptoms.

If it is Afib have I left it too late for ablation? I know it’s not a cure. Before BC my QOL was fine even with closer episodes of AFib so I could cope with that. Another thing to consider is I live on my own and don’t have any family so wouldn’t have the care I might need for a while after ablation. At 66 am I too old especially if I needed it a couple of times?

I do keep as active as possible and involved in a few things. I eat healthy, don’t drink or smoke and take magnesium taurate

Apologies for long post but I’ve been trying to piece it all together since yesterday.

Many thanks

Love Frances xxx

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Frances123
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22 Replies
BobD profile image
BobDVolunteer

There is never too late for ablataion unless you have become permanent in which case results are poor. Yes it is only about quality of life so long as your synptoms are well controlled. With events as few as yours heart damage is unlikely I think.

Frances123 profile image
Frances123 in reply to BobD

Thanks Bob. Good to think damage is unlikely. I just wish I could feel well again and get on with life. Afib QOL in the main was good then. Just wish I could sort the acid and these med side effects out. I’m 85% sure its the drugs as majority have only happened since then.

Have had bad acid today and regurgitated. Put myself into Afib. Took 100mg extra Flecainide. 10 weeks since last bout. Don’t see this as a breakthrough as such but a by product so to speak of the bad acid. Oh happy days.

Love Frances xxx

pottypete1 profile image
pottypete1

You are not too old. I am 72. The first ablation I had 10 years ago and the last 21 months ago.

See if you can get an appointment with an EP to discuss your options as a successful ablation can greatly improve your QOL.

One caveat, don’t expect instant success I have progressively improved over the past 18 months.

Pete

Frances123 profile image
Frances123 in reply to pottypete1

Thanks Pete. QOL pre breast Cancer was good and could cope with the AFib even though episodes were closer and are a bit of a nuisance when it happened. I just want to feel well and get back to where I was even with breakthroughs. I’m fairly sure the ectopics are to do with meds and acid. If I could get back to where I was I don’t think I would go the ablation route but I want to look at options, if it was viable or was it too late.

Thanks

Love Frances xxx

Auriculaire profile image
Auriculaire in reply to Frances123

Even if your magnesium test comes out ok if it is not Red cell (as second try points out) I would still think about supplementing with magnesium if this is not contraindicated by your BC drugs. You might also get your vit d checked and if this is low ,supplement ,as research has shown that a high level of vit d can help prevent a recurrencecof breast cancer . Dr Gupta recommends magnesium taurate for afibbers. What drugs do you still have to take for the BC?

Frances123 profile image
Frances123 in reply to Auriculaire

Thank you. Ive just had the blood test and its an all singing, all dancing one. Magnesium is only being tested as it’s part of the package so to speak. I already take Magnesium Taurate and have done for about 3 years.

Many thanks

Frances xxx

rothwell profile image
rothwell

I think you are very lucky to have such infrequent episodes of Afib, I have an episode every day which I hate but tryou to keep moving and ignore it. It usually lasts between 2-3 hours but sometimes less.I had an ablation last year which didn't work and am awaiting a second one. If my episodes were 4-8 times a year, I would probably leave well alone. Mind you I have refused flecainide because of possible side effects so the frequency of my episodes is probably down to me.

If you do decide to go down the ablation route, don't worry about being on your own. I live on my own and was fine.

Frances123 profile image
Frances123 in reply to rothwell

Thank you. Believe me I know I am lucky with only 4-8 episodes a year. At the moment it’s been 18 hours. I average 24-36 hours. It’s hit me more this time as I’ve been having loads of PACs, not feeling so good with BC meds and thinking “what’s next”. Guess I’m feeling a little sorry for myself too.

Many thanks

Frances xxx

secondtry profile image
secondtry

The stress of having had breast cancer may well be catching up on you as AF I believe can kick off not during treatment but ironically after a success due to the vagaries of the Vagus Nerve (plenty to read here about that). On supplements, I hope your Mg test is 'Red Cell' not the GP one that almost always comes out OK. Last point consider CoQ10.

Frances123 profile image
Frances123 in reply to secondtry

Thank you. Yes, there has been a lot of stress since BC diagnosis but it is getting less and less and don’t always think about it. Oh yes, the vagus nerve is a cunning little creature isn’t it.

I tried Q10 many years ago and it didn’t agree with me. Maybe I will look into it again as it could have been something else at the time. I wasn’t so knowledgeable then.

Many thanks

Frances xxx

CDreamer profile image
CDreamer

Hi Frances - AF on it’s own can make you feel rubbish but add in what you are coping with? I think it would be a little unusual to not feel rubbish.

Just a thought - if you are having acid regurgitation which you/your doctor think maybe causing the AF - if I were you, I would be looking at how I could treat the cause - without PPI’s before even considering ablation. There are many, many routes. I say that because I found that ablation seriously worsened acid reflux and seriously worsened my AF the first time around. The second helped but AF came back 3 years later - take off the 9 months recovery - 2 years free so it’s not a panacea but worth considering.

Our stomach’s need to be acid in order to digest protein - but you don’t want it regurgitating into the esophagus so you need to know why is it doing that? If you can’t digest protein you will have a nutritional deficiency. If it’s not a sphincter problem it could be a lot of things but worth looking at consulting Lifestyle Medicine Doctor or Naturapath or Herbalist, alongside working with your GP.

Just a thought. Ablation can and does work for many people but it is invasive, it can take months to recover properly and regain strength and your mind & body has already been through a lot in coping with the BC so at the very least, supplements and herbs will help your mind & body cope with the drugs.

You may find the articles on this site of interest heartmdinstitute.com/heart-...

Frances123 profile image
Frances123 in reply to CDreamer

Thank you. It was only easing people’s responses to someone’s question the other day and feeling rubbish that got me thinking. I take magnesium taurate for the palpitations/ectopics. I’ve feduced PPI to 1 a day and now 1 every other day. Also started taking Vogels Plantigo drops. Hmm, wonder if that kicked the AF off. My HR yesterday went up to the 120s but by bedtime was down to 70s. Was using the alivecor to keep track. I was wondering if it was PACs then and sent it off for report. Only done that once before and was multiple PACs. Came back this morning it’s Afib. Never have I had Afib and normal HR.

I’m waiting for results of blood tests and will then look at supplements etc to help. I am a healthy eater and quite open to herbs/supplements etc. Going to try mastic gum as well.

Many thanks

Frances xxx

CDreamer profile image
CDreamer in reply to Frances123

You have just got to explore all avenues.

Hope you find a way that works for you. xx

AIW58 profile image
AIW58

Hi

it's not too late for an ablation but I don't know whether there'll be any issues re the breast ca. No harm in asking for a referral to discuss options.

I started with PAF around 6 years once or twice a year for 4-6 hours. Saw a cardiologist and we both agreed not to treat. Last year episodes became more frequent 2-3 a month still just 4-6 hours. I started Flecainide 50mg twice a day and was put on the waiting list for an ablation then. I had no AF on the Flec, had my ablation March 28th and have been fine since. Stopped the Flec last Sunday as instructed by EP so now is the test of how sucessful it was. I know some people take longer to get over it but not all of us.

I'm female aged 59.

I def think it's worth checking out your options.

Amanda

Frances123 profile image
Frances123 in reply to AIW58

Thanks Amanda. Hadn’t thought BC might be an ablation issue. It was my left side and I had radiotherapy. Oncologist was aware of Afib and they put a deflector into the machine so no rays touch the heart. They showed me and I knowledgeably nodded my head. Hadn’t the faintest idea what it was or they were talking about.

I’m sure Flecainide is still doing a good job. I’m still only on 2x50mg a day which I was first prescribe all those years ago. Maybe I need it increased? That’s a thought.

Many thanks

Frances xxx

Frances123 profile image
Frances123

Oh gosh. Sorry for typos people 😱xxx

CDreamer profile image
CDreamer in reply to Frances123

Blame the autocorrect fairy ⌨️

Dodie117 profile image
Dodie117

Might be worth trying probiotics. I had a lot of reflux and when that subsided, bloating. I had successful ablation in 2013 - no more AF but stomach problems continued. I stopped eating bread in the mornings and replaced it with kefir (a probiotic) fruit and yogurt. I still get some bloating but significantly reduced. If I am careful I can go weeks without problems. I now make my own kefir. May not work for you but an easy and healthy experiment! You need to give it 2 or 3 months for the good bacteria in the kefir to kick in.

Good luck 🍀

Frances123 profile image
Frances123 in reply to Dodie117

Thank you. I was looking at kefir the other day in my little health food shop. I’m going to get some and will try anything. My acid was so awful yesterday, worse I’ve ever had it and in the end I succumbed and upped my medication. I had been 3 weeks on a low dose and was white knuckling it but it was bearable. last 2 days was too much to handle though what with Afib.

Many thanks

Frances xxx

rothwell profile image
rothwell

Regarding your acid reflux , please try a glass of water with lemon juice squeezed in and then half a teaspoon ofor bicarbonate of soda....it fizzes up and is delicious. Managed to get off omeprazole after 15 years of taking it by drinking this "cocktail " as soon as reflux occurs. Also a Rennie every now and again.

Frances123 profile image
Frances123 in reply to rothwell

Thank you. I am never really free from acid. It’s just some days it’s so very mild I don’t know it’s there. Will try the lemon and water. Have used bicarbonate before but have to be careful not to have too much.

Many thanks

Frances xxx

Frances123 profile image
Frances123

Morning all. With great relief I woke at 5:30am and knew straight away I was in NSR. Checked and I am. What a blessing. First time I don’t know when it flipped back so going to say 5:30am. That makes 36 hours. Not the longest but not the shortest. Just so grateful it’s flipped back. After feeling so awful for 2 days with acid, never feeling this bad before I succumbed and upped the PPIs after 3 weeks of gradual lowering dosage. Don’t know if that had anything to do with it. Feel I’ve let myself down in a way but just happy to have heart stop dancing. Acid bearable this morning. Will try again with the acid problem and not giving up. I want PPIs a thing of the past.

Still grateful for anyone else’s suggestions and tried and tested home remedies.

Love Frances xxx

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