Newly diagnosed with PAF: Hi all After 1... - AF Association

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Newly diagnosed with PAF

Hi all

After 18 months of a racing heart, palpitations, missed beats etc, a serious episode last week landed me in hospital where I was diagnosed with PAF. Previous to this my cardiologist kept telling me I had nothing serious & go away & get on with my life! I felt he wasn’t taking me seriously, so this has come as a huge shock. I’ve been prescribed Fleicanide & Rivaroxaban & have a follow up outpatient appointment in 8 weeks. Although I’m relieved to have a diagnosis after all this time, I’m really struggling to get my head round it all. I’m 68 & have always been in good health till now. I’m just wondering how people cope with this condition, eg do you sit back & take it easy or push yourself to do things. I’ve only been taking the meds for 4 days but have already noticed a decrease in the palpitations so I’m trying to feel positive, but finding it difficult!

Oh & one more thing, is it common for people with AF to “hear” their heart beating? I can’t get to sleep at night because of the pounding in my ears.

Thanks

Jen

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Hi Roobydooby & welcome to the club that no-one wants to belong to!

Firstly - yes it is common for us AF’ers to not only hear out heart beats but also to be super sensitive to every slight change in rate or rythmn.

Secondly - yes it is a huge shock and many healthy, fit people - often super fit peopl- are diagnosed with AF and I think the fitter you are, the bigger the shock.

Thirdly - go to the AFA website and download all the information leaflets and read up on AF - what it is, what it is’nt what treatments are available and how and why they work - or sometimes don’t.

After that know that you have found an excellent forum with loads of knowledgeable and supportive people who have lived with AF, often very well with minor lifestyle adjustments such as reducing the amount, duration and/or intensity of exercise but still continue to exercise, in fact it is good to exercise but within certain parameters and the easiest to do is be certain that you can talk a complete sentence out loud whilst exercising. If you can’t stop and wait until you can or slow down until you can.

It takes time to adjust and the uncertainty plays tricks on you and how you cope with uncertainties does influence just how anxious you become and anxiety will increase symptoms so beware, manage your stress - deep breathing techniques help as do regular meditation and mindfulness practices,

Read the information sheets at the AFA site and do ask any questions here, this is a very helpful, knowledgeable and friendly forum.

Best wishes CD,

PS - and do read the threads here - you can learn a lot.

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PPS - I’ve had AF now for more than 12 years and of similar age,

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Hi CDreamer

Thanks for taking the time to reply. As you suggested I’ve downloaded a lot of info from the AFA site, now I’ve got plenty of bedtime reading! I’m also going to look into meditation techniques as I’m finding it hard not to get stressed about it all.

Jen

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Stressing about it in the early days is also perfectly understandable and normal, most of us have been where you are now.

I'm off to Birmingham for AFA Patient Day tomorrow, I first visited in 2013 and learned more in one day there than I had in the previous 7 years. After the day you can have access to the slides for a fee - think it's £22? Well worth doing also because you will get access to the latest thinking.

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That is such a helpful reply! I am in a similar boat to Roobydooby....Good morning to you both! Diagnosed with Paroxysmal AF after a planned ablation for SVT 2 weeks ago! All a bit of a shock after 20 years of EP telling me that I was imagining it all! Now approaching 66& used to be very fit, but put my body under stress when I was flying. It all takes a lot of sorting out in ones mind. I was given Rivaroxaban and Flecanide as a PIP. Getting enough good quality sleep and managing stress is crucial. Relieved that they found cause of my problems though! Used to do a lot of yoga, need to get back to it. My husbands health has been very difficult last 10 years( He's 82, used to be a super for mountaineer) I also have titanium hips, ( very good, done 12 years ago) ah the joys of getting older ! This site is so helpful, thanks everyone. We are off to Italy for 2 weeks, putting problems aside for a while

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Good morning Alessa69

Yes we have something in common in that our EP didn’t take us seriously! But at least we now have a diagnosis which is the first step. I have found this forum to be a great source of info & support, it’s just good to hear that others with AF are getting are able to get in with their lives!

You mentioned a holiday, can I ask you how this has affected your travel insurance? I’ve heard horror stories of the insurance costing more than the actual holiday!

Best wishes

Jen

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I have used Eurotunnel Insurance for years, the criteria is that your Dr says that it’s OK for you to travel, obviously you need to have asked your Doctor that question! Phone number on their website, you don’t need to be travelling with them . Double checked with my EP on Monday that we’re good to go. Trying to get organised seems like an uphill task ATM ....

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Thanks for that, will have a look on their website. Enjoy your holiday, I love Italy!

Jen

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Hi Jen

I'm no expert on this subject so I'm just using my own experience to reply .

I'm 48 and didn't actually find out until June that my heart was pooling blood in the left ventricle. My heart was /is enlarged due to the strain on the heart from the AF . The only way I found I had this was by having a chest x-ray because I was trailing some new medication for RA .

I got worried at the routine heart scan ! It took forever .....

I was sent for an ECG

Bloods

Then had to see the cardiologist 4 hours later .......

I was given Bisoraprol which helped ,. Immensely at first , but after taking them I've noticed if I get a bit of a scare my heart starts going mad beating and I feel weird . Not been able to get my breath .

I've only noticed it since taking these tablets

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Hi Reikimaster

I’d been taking Bisopralol for 16 months before they took me off it last week, felt constantly tired so happy when they changed me to something else, see how it goes! All the best

Jen

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How much did you take ? I’m on 3.75 , one doctor put me on 5mg but it made me swell up in my ankles .

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I took 2.5 initially, then increased to 5 but that was too much & I ended up in hospital with a slow beat. It was then reduced to 2.5 again. Didn’t really get any side effects other than lethargy.

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Hello Jen and welcome to the Forum. You have mentioned Flecainide and Rivaroxaban, can I ask, have you also been prescribed a betablocker or calcium channel blocker? The best thing you can do first is check out the AF Association webpages where you will find masses of useful information which will help you understand the condition and, more importantly, the treatment options which are available to help control AF. To answer your question, the best way to cope with AF is to continue to do the things you want to do, but if you experience any issues which cause you to reduce the pace a bit, then listen to your body and adjust activity levels accordingly. The majority of AF sufferers all go through a number of different phases and of course, experience a number of highs and lows, but they still continue to lead relatively normal lives. Regarding hearing your heart, the real problem is that almost every AF sufferer quickly becomes very much more sensitive to every change, noise and fluctuation almost immediately after diagnosis. There is no easy answer but finding ways to reduce anxiety will help enormously. Many suggest lying on your right side helps and perhaps using the sleep function on a clock radio to create a diversion.

I’m sure others will respond with suggestions for you to consider, but hope this helps for starters......

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Strangely, I hear my heart loudly thudding when I lie on my right, and it goes silent when I lie on my left. I sleep on both sides. We're all different.

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Hi Flapjack

Thanks for taking the time to reply in such detail. In answer to your question about meds, I’d been taking a beta blocker (Bisopralol) for 16 months before it was replaced while I was in hospital. I was given the impression the Fleicanide was instead of the bb, I need to follow up on that! I’ve taken your advice & checked out the AFA website, downloaded loads of info so will plough my way through it.

Thanks

Jen

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The reason I asked is that many EP’s say you should not take Flecainide regularly without taking either a betablocker or a calcium channel blocker as well. If used as a PiP it’s not normally a problem. I suggest you check with your doctor because we are all different!

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Just to say that not that Beta Blockers do not suit everyone and not all EP's will suggest taking a Beta Blocker, with or without Flecainide which I took for several years without a Beta Blocker because I really could not tolerate them. Unfortunately there are areas of controversy and individual circumstances vary so there is 'no one fit all' and you need to explore which meds suit you and work with your specialist. It can take a while to settle with which meds help - or don't.

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So sorry you have had a difficult time. Just wondered what part of the world you live in as I am in Essex and the cardiologist said exactly the same thing to me. He is a great man but it did take a few hospital admissions to get my heart straight and tweeking the meds. It got progressively worse but now am more settled. Paf is so difficult to managed as you just don't know when and where it might kick off. To be frank I take it on a day to day basis. I do walk more try for 8000 steps a day. Just retired which has helped with the stress. I think you have to listen to your body and hopefully your cardiologist. Some hospitals certainly in Southend have AF nurses who are very knowledgeble. There is also a group that meet together called Essex Heartbeat. I wish you well. Regards Chris

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Hi Chris

Thanks for your reply. I’m in Lancashire, first saw a cardiologist then an electrophysiologist & it was him who I felt was fobbing me off. Because it wasn’t happening regularly he just kept saying he couldn’t find anything, it took the latest admission (to a different hospital than the one he’s at) for them to make a diagnosis. I’ve found out there’s a Heartbeat centre in the town where I live so I’m going to check that out, I’ll take any help I can get!

Best wishes

Jen

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Hi Jen - You have had good helpful responses - not allot to add but I developed pAF 20 years ago (70 now). Flecanaide works 99% of time for me with Apixaban as anticoagulant. I hated betablockers - hopefully you won't need one. Exercise is good although it came on during a tennis match once and I really had to stop quickly. Two things bring it on - too much alcohol when combined with a virus. All the best -

David

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Hi David

Thanks for your reply. I’d been taking a beta blocker for 16 months before the hospital stopped it last week. I’m pleased as I felt really tired all the time, hope these meds won’t have that effect but it’s early days! I haven’t had any alcohol at all since summer 17 & also drink decaf everything, don’t know if this has made any difference, but I’ll try anything!

Regards

Jen

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That's good - Beta blockers slowed me down by 20% and I also felt tyred and depressed with it. All best

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Two things ; sleep on your right side and don’t Google. You’ll be fine. 💕

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Too late, I’ve alreay Googled! Will try sleeping on my right side though, thanks for the tip

Jen

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Hi Jen and welcome.

Today I am 75 and wearing a holter monitor to celebrate!! But I am still going out to lunch with my family! Please don’t let AF control your life. Just take each day as it comes and work through each episode.

I too have pulsatile tinnitus and am aware of every beat especially at night. At times I quite welcome hearing the strong steady beat as I go to sleep at others if it is relaying every mixed beat a little too clearly I get up and read a book to take my mind of it.

Di

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Happy Birthday Di, you know how to celebrate!! In the Hymer? or back home?

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Thanks. Unfortunately back home, but watch this space!!

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Hi Di

Thanks for your reply. It’s good to know there’s life beyond AF! I also feel the beats more at night, suppose because I’m not distracted by other things, I’m finding that hard to deal with. Will have to try some techniques to keep me calm.

Jen

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Hello and welcome. Just a tiny bit confused by your 'decrease in palpitations'. Do you mean that they happen less often or last for a shorter time? The things is, we are all different. Some of us have a little (or not so little) wild heart session a couple of times a week or once in a month or less often. The fact that you have noticed an improvement in four days maybe means you have a few episodes every day. Or are the wobbles there nearly all the time?

In other words, does the P in PAF mean paroxysmal or persistent or permanent?

I would add the comment that surely you are still in good health. As you rightly say, AF is a condition, not an illness. In time, if it is allowed to run amock, it can damage your health but some of us perhaps tend to see ourselves as not far off normal with an annoying aberration that has made us pay a bit of attention to our wellbeing.

I am finding it hard to resist the temptation to say don't sit back & take it easy nor push yourself to do things - the latter is why so many extra fit endurance athletes develop AF. I tend these days to ignore AF and get on with life, as your cardiologist suggested. But I am an old hand and you need to get to grips with your brand of AF first, get your head round it and how to gain the upper hand. The huge volume of information and support here will help.

You don't mention an echocardiogram nor a 24 hour (or longer) ECG. And I don't think the responses have mentioned the Kardia ECG monitor nor seeing an electrophysiologist.

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Well said Rellim2. I'll second everything here.

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Morning Rellim2

Thanks for taking the time to reply. Looking black at my original post, there’s a lot I left out! The P is for paroxysmal, started out of the blue March 17, Nothing then another episode a week later, then a month later, you get the idea. Was initially referred to a cardiologist who then referred me to an electrophysiologist, he arranged for a treadmill test, 48 hour monitor (had one on twice), echocardiogram, all came back clear. He wanted to discharge me but I wasn’t happy so he arranged for me to have a loop recorder inserted, just to keep me happy! It captured daily palpitations, which he said weren’t serious, but then last weekend came the big episode, all caught on the recorder. While in hospital I had another echocardiogram, again clear, then saw a different cardiologist who diagnosed the paroxysmal AF. Does that make more sense?

Finding this forum has been great, so much info & so many people going through a similar thing & supporting each other. As you say I just need to get my head round it & work out my coping strategies. Thanks for your support, really appreciate it.

Regards

Jen

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That makes perfect sense, Jen. Many of us haven't been diagnosed for months because things didn't show up on cue. You know where you are now! And so, at last, do your doctors.

What will they offer? There are choices - lifestyle changes, medication, intervention in the form of ablation. We all have our own brand of AF and opinions vary as to how best to deal with it. The first thing is to gain confidence, find what works and what upsets the equilibrium and there's plenty of info on all of that here.

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Hi,

I just commented on CDreamer’s reply to you above.We are in a similar boat, prescribed same meds, and same time of life. I am just grateful that mine was eventually diagnosed, after 20 years of it being implied by EP that I was imagining it all, they only 1st caught episode on tape in Dec 2016 ! I know well hearing that sometimes pounding heartbeat at night can make you anxious. Make sure that you are well hydrated, I find that lying flat and putting my hands on solar plexus area , and doing some relaxing breaths helps, or gently pressing back of neck/ scalp to relieve pressure helps me, as does lying on my side. Will write more later, it onwards and upwards , finding solutions and all supporting each other ! Good sleep also Is so important! 😘

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Hi Roobydooby (Love your name)

Welcome to the forum. You'll be given caring support here and helpful answers to any questions relating to AF that you may have. All from people who understand and have had exactly what you are experiencing.

What excellent advice you've been given above, I don't think I can add anything to what has already been said, but just wanted to say hello.

I've had AF for 13 years and once you get used to the idea that you have it, it's nowhere near as life changing as you think it may be when first diagnosed.

Best wishes

Jean

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Hi Jean, my name comes from my granddaughter Ruby, we call her roobydooby

Thanks for taking the time to reply, it’s good to hear that you’re able to get on with life, I’m hoping after I get over the initial shock I’ll be able to do the same! I’m amazed at the advice & support available on this forum, so glad I found it!

Best wishes

Jen

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Hi Jen, I'm 73 and not very fit at all but just to get things in to perspective I'm going to list my health problems and worries:

Possible skin cancer (test booked), IBS/diverticulitis, cataracts and retina problem, osteoarthritis (spinal and hip), asthma and PAF.

In that order! I admit if my PAF symptoms were worse or more frequent I might change my order a bit, but not much.

Just take as little medication as you really need and continue to lead a healthy and enjoyable life as much as possible. Best wishes.

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Hi Buffafly

Thanks for taking the time to reply to my post, it’s appreciated.

You certainly have some health problems to deal with, I wish you well

Jen

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I wasn't looking for sympathy, these are common complaints at my age, simply trying to show that although AF feels scary it is in fact quite low down in terms of life changing/threatening conditions 😊

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"Getting your head round it all" is really what it is all about. I too was shocked by this when it happened to me last year, aged 67 then. I'll be 69 next week. I found that, for me, learning all I can about AF and carrying a Kardia device so I can check on my heart when I need to, has settled my mind and let me carry on with life without too much hindrance. I can 'sit out' the AF events (which are rare events for me) by calmly going to bed and trying to sleep, when I revert some hours later to NSR. Yes, you feel terrible and strange while it is happening, and I wouldn't take up mountain climbing or anything like that, but then at my age perhaps I shouldn't do that anyway.

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Hi Momist, thanks for taking the time to reply!

I like the idea of “sitting out” the episodes knowing that your heart will go back into normal rhythm, I’m going to look into strategies to keep myself calm , particularly when it happens in the middle of the night, (I live by myself so always feels worse when you’ve got no support)

Rest assured I have no intention of taking up mountain climbing, but aim to get back to my walking with friends, I’ll be happy with that!

Best wishes

Jen

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Would add, ask about ablation. When first diagnosed my EP gave me choice - meds or ablation route. I opted for ablation as he was of the opinion that if I wanted that then the earlier the better. That was 5 years ago and still free of AF.

I too hear my heart. My theory is that it’s vagal nerve problem. To calm it down :

Breathe in count to 7 raising diaphragm and extending stomach. Then breathe out slowly for count of 11. Do this for 5 or 10 minutes. It calms things down and I can no longer feel my HB all over my body. Easy and worth a try.

Good luck on your journey but there is life after AF and there are many worse things as we approach the 70 mark!! 🍀

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Hi lallym, thanks for your reply. The cardiologist has mentioned ablation, but he wants to try meds first, I see him again in 8 weeks so I’ll ask him for more info.

I will definitely try your breathing tip, anything to stop the continuing pounding in my ears!

Best wishes

Jen

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Hello Robbydooby, I’m new at this,PAF since May. I understand the shock of it, and this place and the folk on it are a good start to being able to understand this thing.....the forum has helped me realize that my life can be normal apart from the blips and the side effects the drugs sometime give......I thought my life was over and it’s a bit like a wounded bird under a bush gradually getting better and coming out into the world again.... I still am not right, I still have these panics it will happen when I’m out...I’m not as social as I was, ..but I’m a hundred times better than I was at the start....u mentioned Flecainade, well that has been my saviour since I started taking it.....it’s the bisoprolol that gives me side effects....

It helps if your family and chums understand what this is and how it affects you personally, , as it’s not the same fir everyone. Chin up! It will be a while but your head will get round this. I think everyone here has been in your place.

Sue

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Hi Sue, thanks for your reply & good to hear you’ve responded positively to Fleicanide.

It’s been good for me reading all these posts & realising just how many people are affected by AF but are still here & getting on with their lives, if you can do it, so can I!!!

Best wishes

Jen

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I would say listen to your body , if you wake up tired out don’t go overdoing things. I wake up tired sometimes and it’s cis I have small afib sin the night I dint know about....(according to Cardiologues).....as Time goes on and you have normality more you will forget about it, it won't be in your brain dominating all the time. At first I never stopped thinking about it.

Sue

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Hi RoobyDooby. I love your name too!

I'm a recently diagnosed AFibber. Just 5 months but my story is quite similar to your's as I believe I have had the condition for maybe 5 years & repeatedly being told it was just anxiety because it was never recorded until I ended up in A&E & got a diagnosis. So I'm only a little bit further down the AF road than yourself. I too have & probably still am struggling with it. I have had a course of CBT which helped to some extent but the most help I have received is on this forum. Just knowing you are not alone is such a huge help & the support you get from everyone is amazing. My worst time is night time too 😓

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Hi TamlaMowtown, my name is my granddaughter Ruby’s nickname, couldn’t think of anything else!

Yes your story sounds very like mine, really felt I wasn’t being taken seriously because by the time I got to A&E my heart had started to behave itself again so after they’d realised I hadn’t actually had a heart attack, I was just observed for a few hours then sent home. Only for it to happen again & again (7 times in 9 months). Fortunately this time they decided to admit me & at last I got the diagnosis.

I’m so glad I found this forum, the support I’ve already received from yourself & others, has helped to put my mind at rest, just knowing that there are others who know what it’s like has been a great help.

Wishing you well on your AF journey

Jen

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Well we already have another thing in common other than AF because I have a granddaughter called Ruby 🤗 I'll be thinking of you tonight & it'l help us to get through the heart orchestra 😁

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It is not wise to push yourself to hard but it is important to exercise at a moderate level (don’t get breathless and still be able to hold a conversation). The reassuring thing that I gained from this forum is that AF is not life threatening so there is no need to stress about it. The right level of medication is important and in between hospital appointments use your GP to check you are on correct doses if you feel your PAF is not under control.

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