The Disturbing Mental Aspect AF has on Us - AF Association

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The Disturbing Mental Aspect AF has on Us

I started a post this morning talking about the mental effects AF and all it entails has on our minds and lives. I thought members would like to talk openly about the way it had affected them in good and bad ways. Lets face it, the sometimes disturbing mental impact has been a major part of our lives, especially when we suffer a particularly bad attack or are awaiting an ablation etc, and that it needed to be talked about here in an honest and open way.

Unfortunately, it was so depressing that I came to the conclusion that it was best not to talk about it at all.

Can we please decide together whether this topic should be discussed on our forum or not. At the moment as I've just said I'm thinking not, but why does the torment we sometimes experience have to be kept a secret?

Jean

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I think the anxiety, depression etc can be baggage AFib brings with it, in many people. For me, the first year of PAF events occuring randomly every 2-4 mo while trying to work a full time nursing job in home health was a Shock and Awe time. I was driving alone out in remote areas trying to do my job, adjusting to meds I hated and the fear of wondering when the next attack would occur was almost debilitating mentally. Ive never had a PTSD diagnosis but wonder if the fear of AFib was similar. After the first year or more, I finally settled down and wasnt as petrified of AFib, it became more of an annoyance. So yes, I think the mental effects of AFib should be a welcome subject to discuss here. It is just as important as discussing the physical effect of a fib, meds, etc. My family, friends try and understand and empathize but that pales to the understanding found here from people that have walked that road.

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Thank you for speaking so honestly Hoski.

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Jean I do agree with you to some extent. Back in the early noughties when I was first involved with various committees I banged on about the phsycological impact AF has on its sufferers and the need for support from doctors but little has happened to change my views that the medical profession seem to ignore it for the most part. We here know how much it can affect people and C Dreamer for example, having experience in such matters , has posted various ideas on coping strategies. If people will be open and talk without bias then fine but you could be opening a can of worms I fear.

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That was my fear Bob, but I'm poised to delete this post immediately should I feel it gets out of hand or causes distress.

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I am sorry but if this is not talked about openly and honestly without fear or prejudice then nothing will happen. Although I had 11 months of Afib after my open heart surgery in Jan 2016 I still suffer from Post Perfusion Syndrome (aka Pumphead) but this is not generally openly recognised by doctors or surgeons and is only discussed on a web site.

I feel that the 'mental' aspect should be discussed if we want to try to understand its affect on people and help support each other and get the medical profession to join in.

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Hi Norm, yes I wonder if our fears should be openly talked about and so far, so good with the responses from members here.

I'm hoping that the few cardiologists and EP's who sometimes visit this site, will take note of the very real psychological effect AF and other recurrent heart problems have on people. We're told that we have a 5 times more chance of having a stroke, how can they drop that bombshell of information on us and expect us, when having an attack, not to worry!

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Presumably the medical profession ignore AF because it is so hard to deal with. If it were given priority in medical research, one hopes that real progress would be made in many areas. An early-warning device that would alert people to an imminent AF attack, or to the build-up of a blood clot in the heart, would be of great value, as would new drugs for dealing with all aspects of AF. The mental effects discussed here would then be less marked.

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I don't think anybody ignores AF but many doctors have little or no training in it. Remember that this is all very new science less than twenty five years old most of it since it is only since the 90s that ablations have been available and mid 2000s before any new drugs came on stream. The link with stroke was not widely publicised much before 2007 either so a lot has happened. The big problem is that it is such a mongrel condition. Lets not blame doctors for indolence, even in the cash driven US of A there is little really new progress.

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OK, but your wording (see above) was "..........but little has happened to change my views that the medical profession seem to ignore it for the most part." My contribution was focused on the issue of research.

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My comment was regarding the psychological side of AF which IS largely ignored unless one is lucky enough to have a sympathetic doctor. Sorry if that confused you.

Since AF is such a mongrel condition which affects people all so differently your idea of early warning devices seems highly unlikely. We need to find out why it happens first and I don't think we are anywhere near understanding that yet despite all the progress we have seen.

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It is so easy to take the "depressing" route that people end up forgetting to live. My journey has been disappointing, insomuch that you now realise what a mess (in our neck of the woods) the Nhs really is. Each appointment has literally months and months in between without correspondence/appointments that end up rolling into years without a plan.

With the aforementioned in mind I have adopted to a degree a sod it attitude. If it happens - it happens, I say that with my fingers crossed that it is not a dilabating stroke that cabbages me. In the meantime I intend to live a life (within moderation) compatible with my age. Do I consider that it is not fair where I am - yes I do! Then when I finish feeling annoyed, I thank my lucky stars that I do not live in Syria, Afghanistan, Iraq etc as those people have horrendous lives - I will take what I have got and get on with it.

P.S. To all.......dont forget to live or it will eat you up.

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Such wise words of yours John and I too follow the 'sod it' attitude you mention. So many people would be eager to swap conditions with us and I think it helps to think of others less fortunate. All in all and in some ways we are lucky that AF is all that we have to contend with. It's just that niggling fear we can't prevent, that steps in when we have a severe attack.

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Jean thank you. As they say "it would not do if we were all the same". Having said that; it would be all too easy to live whatever life we have left, in fear! You then have to say......what kind of a life is that? If I give one person alternative thoughts and a reason to live instead of [existing], then it has been well worth talking about what some see as the unspeakable.

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Sometimes I have a sod it attitude, but other times I feel doom and gloom anxiety.

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I am never been a depressive sort of person, having dealt with the public for the best part of 40 + years I could not afford to be like that in any event. In many respects I have nearly always been a jokey person, perhaps at times dare I say too much. However, going back a couple of months ago I was waking up in quite a depressed mood. I was laying there and wondering what it was all about and what the future held - not like me at all, in fact it surprised me the way I was thinking.

It lasted for about a week or so and passed. Looking back, I am know wondering what part any of my medication might have played a part - it was just not part of me or my make up, as I have always sorted out general problems in life that might have affected me. I would say look at your medication and also your lifestyle, putting that to one side and if possible try to give yourself something to look forward to ie a meeting with friends, a night away somewhere a short trip or even a holiday. It is something that is easy to get out of the habit of ie "treating yourself" if you are feeling under the weather.

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I know as I grow older I wonder how much longer I've got left in this world. It can make me feel a little sad - just appear to have suddenly got to this stage very quickly.

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Its funny you know - well maybe not. I have known loads of people who were bothered by birthdays! The type who thought 30/40/50 year birth dates were ominous. None were for me with the exception of my 50 year birthday, whereby it crossed my mind that my next biggy [60] sounded rather ominous for me! Unfortunately for me; I must have been taking part in a film that must have had a part that said (20 years later)😨 because that was the fastest 20 years of my life. It was a light switch moment, well it seemed that way and ones lifespan has gotten slightly shorter. Anyway where I'm going I won't have to worry about heating bills😁.

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Do you remember how you felt as a child when you had a birthday and went up a year, my how important that made us feel! I can remember at age 18 thinking how mature and to be admired people in their 20's were. At the same time I used to say I didn't want to live past 40 - it was just so old! I was going to say, oh to be 40 again, but then I remembered I'd have to go to work, so I'll stay at my 68. My life is good!

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Birthdays were always welcome when we were younger as it meant that you were that much nearer to adulthood, or shall I say nearer to getting into a pub legally 😀, all part of growing up. We had a busy life balanced between work and a wonderful social life ie going out with friends (mostly workmates) and going to clubs to see International artists that 40 years of age was a million miles away. A busy work life in particular meant that I gave very little thought or attention to age. I guess that it ironically only hit me at your age 68, that is when my Afib kicked off. Prior to that I had had Palpitations for 46 years, it did not bother me too much as it was synchronised, basically just a very fast heart beat that used to slam on the brakes instead of slowing down steadily. As I mentioned earlier, I'll take what I have, especially when I see others that are younger than me, looking and acting 10 years older.I guess it is what it is, with many who have passed on who would swap places in a heart beat😂

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Yes. It should be talked about and I think it needs to be talked about it or it becomes the very thing we have had - it becomes depressing, stigmatised and taboo. Which can compound the issues people face.

It needs to be recognised that the way in which people's mental health is affected by not just AF but other underlying medical conditions is just as important as the physical conditions people have.

There are a lot of things that have been posted or been said in reply on here over the years that have not been well received by some and positively appreciated by others. That is the nature of many topics someone wants to raise - it's always going to have a bit of a love/hate effect on people.

On a personal level, I have needed to express my depression at some of the low points and feeling useless as a partner and a dad at least once on this forum. Those who felt they could respond, did, and even if it was just words of support it meant a lot. It also meant a lot to know that it has happened to other people, and I wasn't wallowing in self pity or being selfish.

A lot of people also aren't as lucky as me to have an EP who understands the impact my seriously unstable and symptomatic PAF had on my life.

Nothing anyone says on the topic of their mental health, negative or positive, is done to "one up" people who are struggling or to make anyone feel worse about their situation. I think there is a very high percentage of people with AF who will have at some point had a mental health problem, crisis or "wobble" and it needs to be "out there" to reassure people they're not alone.

Granted, sometimes it can make very difficult reading and it is a struggle to find what to say to someone or shine the torch on someone to lead them out from under it. And, if you're struggling yourself it will invariably bring you down at the same time. It's tough ground to cover.

I don't think we as a community should be actively avoiding the topic or the discussion around mental health and AF. If we do that, we invariably end up feeding the black dog and making it stronger. It's a difficult topic, an emotive topic, but one that tends to go hand in hand with the effects of AF as much as anticoagulation or an ECG does.

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You said it all.

I could not begin to add or take away anything from the superb analysis you have posted Jedi.

Pete

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Well said💜

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Bravo Jed!!! Get that book written.

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Hear hear Jed. You've said what I was thinking, but you put it so much better than I could 😊

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Wow Jedi. Beautiful expressed, thank you. I totally agree.

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I agree Jedi but and it is a big but, some of the people who most need the help are the ones who are so blinkered and withdrawn into their own self fear that they are incapable of seeing or accepting say John6s philosophy and may react badly to such ideas. Those are the ones who need help most but are not yet ready to see that.

There are people here today that I first "met" as terrified newbies years ago who are unrecognisable as the same people so it is well worth the effort even if one does get knocked occasionally.

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I am relatively new to this forum and was only diagnosed with AF 6 months ago. But in that time I have certainly come to realise how easily it can impact on mental health. It started more as a big disappointment to me when I reverted to AF within 3 weeks of my cardioversion in May, having been made well aware that it might quickly fail. But I wasn't expecting to be discharged by cardiology so quickly afterwards to in effect just live with the condition. My AF is persistent and treated with Apixaban and Bisoprolol. Side effects have impacted significantly on my life and over the past two months I have become really depressed. Sadly I am no stranger to clinical depression but naively thought my GP would prescribe the medication that had previously been of great help in aiding a managed recovery. GP advice now is no SSRi's or Tricyclic drugs. The former raise the bleed risk when used with Apixaban, and the latter can aggravate arrhythmia's or bring on more dangerous ones! So within a relatively short space of time I not only have to come to terms with a frightening heart condition, but also at the same time have to find some way of dealing with significant depression without antidepressants. So I very much agree with jeanjeannie and other contributers that AF for many can bring with it significant psychological baggage, something I suspect may not be given sufficient consideration by certain health professionals.

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Longfeller, I really feel for you now that you are not being prescribed something to help with your clinical depression. I wonder if a mindfulness course would help, would it be an idea to ask your GP about that?

Big hug my friend, we are here for you.

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Thank you for your your concern and support jeanjeanie. It's much appreciated. I'll certainly check out the mindfulness. I've already self-referred to our local NHS partnership "talking-therapies" organisation, so will ask about it when they assess me. Trying to look for positives when my mood allows.

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Longfeller, I took only 1 5 mg tab. of Eliquis (Apixaban) at bed time yesterday. Two 5 mg prescribed for A-Fib that appeared just after lung surgery 3 months ago & then confirmed by 7-day heart monitor. This morning on waking I felt terrible -- very groggy, out of sorts, mild nausea, vision poorer. I'm already taking SSRi - Citalopram 10 mg 2Xday. Whatever can I do to feel better? I'm wondering if I should just live with the bleed / embolism risk & at least feel better overall so I can function & enjoy a bit of something or other each day!

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I'm sorry to hear how poorly you feel Lyubov, but please be guided by your medical advisers. They have all impressed upon me the importance of minimising the stroke risk associated with pooling blood in the upper chambers of the heart by taking the anticoagulents as prescribed. Despite the issues of side-effects and everything else, I always take the 5mg Apixaban twice daily without fail, and as close as possible to 12 hours apart. I even set alarms and reminders on my mobile phone. I will find other ways for help with the depression, but would never knowingly increase my risk of embolism. Please take care my friend

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Thank you for kindly responding to my note. Of course, I will take the medication as prescribed. I have an appt. with my cardiologist this week & will review my concerns with him. Maybe the worst of the side effects will have diminished by then!

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For several days now I am taking the Eliquis blood thinner, 5 mg 2xday, as prescribed. The unpleasant side effects are still bothersome, but I'll discuss them later this week with my cardiologist. In the meantime, you convinced me to take it faithfully. Thank you.

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In my opinion,it is probably the only place in the world where my dreads and fears are understood properly. Those middle of the night terrors..the threat of stroke and all that entails...

I think we tend to keep a good face on it and remind ourselves we are the better off AF people because we are diagnosed and therefore at least partially protected.but it is undoubtedly depressing that there is no cure...

What do others think?

Xx

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I agree with you wilsond. I think the newbies especially are rightfully afraid. People arent necessarily expecting a fix, but most importantly to be able to express negative emotions and to be understood.

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I agree, this forum is the only place where other people can really identify with and understand what we're experiencing. For the benefit of some other sufferers we can sometimes tend to put on a brave face, on the whole we are brave - I am, until another attack strikes!

We could spend our whole lives worrying, what if, but what if we lived to a great old age and all that worrying about AF had been for nothing and we'd missed out on leading a full life! I'm determined that that's not going to be me.

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Oh those middle of the night terrors as you say. I so rarely have the deep sleep that i once enjoyed years ago because of the niggling worry of waking up in AF. Having been virtually written off by the medics now i have tried and partially accepted the limits AF have imposed on me and adopted a lifestyle to cope with it. However it would be nice to indulge oneself in a real blast from the past again but I wouldn't dare!!

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Sleep these days is very light isn't it and I know what you mean re the risk taking. I envisaged my retiring from work enabling me to join the local rambling club, walking in the countryside has always been my great love and the hobby I most miss now. However, I'm afraid to go on a long walk now in case my AF strikes and I spoil the event for everyone.

To experience a blast from the past - now wouldn't that be lovely! I'm just glad that I lived a very full and active life and made the best of my time when I was able to.

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I'll second that Jean and your original post has been so welcomed as you can see from the many responses 🌸💕

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You do realise you are possibly missing a thrilling ride in an air ambulance 😊? And doing a friend out of the same? And doing all the others out of a story to tell?

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A friend of mine was walking on Dartmoor, jumped down a small bank and her leg broke. She was airlifted to hospital by the air-ambulance, seeing how she suffered afterwards I think I'll pass on that one. She discovered later that she had osteoporosis. Hmm, but if it was just for an AF attack that wouldn't be so bad would it. How exciting that would be!

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Yes, middle of the night is bad when I can't sleep. I take Eliquis and remind myself that afib won't kill me.

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Jean, thank you for your post. When you have AFib, you still look the same. No one can look at you and think that you are facing a health challenge. It makes it hard for others to comprehend when you decline occasional events due to fatigue, anxiety, AFib episodes, etc...after all , it’s not like you have a visibly broken leg or arm, no weight loss or thinning hair like cancer and there are no surgical bandages to be seen to suggest any struggle.

Then on the opposite side- there are those who think anything related to the heart means you have one foot already in the grave because they do not understand what A-AFib is (much like some cardiologist even!).

I have accepted this as a fact and forgive those who can not understand Afib, because as you know, one minute you can be jolly-dolly doing things you enjoy as normal and the next minute you are sometimes in a fetal position waiting for the run -away irregular and fast beats to ease up on your poor soul while other times you ignore it and are able to carry-on.

AFib has its own road it travels on and you are a unwilling passenger in a race car hoping to not crash, run out of gas or break apart. Darn it!

and curses! Because it sometimes can bring a backseat driver called anxiety, depression and despair. But in the language of the Southern States here in USA, I’ve often said “Jesus, take the wheel!”(While I take my channel blocker, anti-coagulate, blood pressure med, and anxiety med as needed).

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Yes yes yes

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Well said April, you've summed it up well.

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Yes, exactly how I feel, thanks for that.

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Oh so right! I couldn't have put it better!!!

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Great response and well put! Best wishes!

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Oh YES!!! Xx

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Amen. Great prayer!

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Friends and family,however supportive they are, cannot fully understand the impact AF can have on those of us

with the condition both physically and mentally.

Here we can reach out for support when we have a 'wobble' because we know that others will understand.

Hope you are ok Jean.

Jo

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Exactly

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My family started out being very caring when my AF first started 14 years ago, but after lots of hospital admissions and heart procedures I'm still here. So I believe that's how they think it's always going to be. My two daughters rarely ask how I am now and never bring up the subject of my AF at all.

To be fair, people who have never experienced worrying health have no idea what it's like. When young I'd wonder why old people went on about their aches and pains etc, it was so boring to listen to and I vowed I'd never be like that. After all (smug me) I did loads to keep fit and that was how it was always going to be. Sigh......................

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Tell me about it. I very much identify with your posts jeanjeannie. Hope to join a mindfulness group next week. Notice the “hope to” I am always aware that I might not feel well enough to go things I plan.

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I think the subject is very relevant and should not be kept 'under the carpet'.

The difficulty is that everybody deals with it in their own way and for some they get on best if it is not mentioned. If any here are one of those I suggest you skip over any such posts (which I do on many others) and instead you might be interested to know (all I can offer) my personal experience, at the outset I was very anxious bordering depressive but just kept going doggedly employing every tool I could think of to help and today (5 years later) I am fine with high QOL. Best wishes and thank you Jean for raising this.

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Thank you secondtry. Yes, I agree with you, the anxiety certainly reduces over time and we do all tend to cope with AF in our own way. I'm a great believer in whatever will be, will be and my worrying will not change a thing, so let's just enjoy and make the most of life while we have that precious gift.

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What I find interesting about myself Jean is that having had both AF and cancer, one not life threatening and the other much so, it is the AF I worry more about returning. I think that probably encapsulates how AF affects us all.

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Ah, that is interesting to hear Bob, very thought provoking, I guess that could be because the heart is one of the most important organs to sustain life. When a neighbour needed to have a stent fitted in her heart I was quite envious that she could have that quick fix and continue with a normal life.

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Interesting,Bob. Wonder if its because with cancer there are often reasons to hope for a real cure,with seversl options and lines of attack. Once its been vanquished,and the timeframe has elapsed (is it 5 years?) it can he put to bed so to say. A relative of mine had testicular cancer at 19..dealt with, now in his 50s.

Whereas with AF we kind of live under the cosh of ut retuning at any damn time it likes,and as yet no definitive possibility of a cure.

Cancer is also something people have heard about,including DWP!

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Bob, "one not life threatening and the other much so,

We will agree to disagree on that one - quite the reverse in many respects!

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We had this cnversatiaon a while back John and I do know what you mean but for the sake of my post will stick with that as it has more impact.

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That gave me pause to think. Wow.

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This forum is a form of extremely useful medication for all of us with AF and it is possible that it replaces any need for meds for anxiety and/or depression ...We don't have to read every post so.I have no problem if someone wants to receive comfort from the advice/help of others who are in the same situation.

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How I agree with you Rothwell. This forum has helped me understand and cope with every aspect of my AF more than any medical professional has. I think of the people on here as my AF family and know that they're always here for me should I have a query or need support. Thank you each and everyone of you.

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Hear hear Jean! Same to you xx

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Thank YOU, Jean! It’s you and so many others like you on here who make it so. 💜

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JJ I agree..... after a while, nothing happens (thank goodness)..... everyone forgets and thinks you’re alright. No issues.

It ain’t like that is it?

I thought when I saw my cardiologist in June this year that he’d take me off all the drugs and wave goodbye.... I’ve been in rhythm since CV in January. Nope he said Ablation next!!

So yeah.... you can never completely kick the damn thing.... something brings you back to earth each time. Ugh!

My dad had AF and he died last year, 4 months later I was diagnosed with it. Worst year of my life.

Things get better and I’m in a whole different place now but dammit that AF is always there.... lurking below your every day life. I hate having it.

However I’m in rhythm and have been since January.... positive vibes!

I also still haven’t told my Mum that I have AF. She is still recovering from losing my Dad. She relies on me now.

Bloody stupid annoying AF.

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Yes, AF is certainly a pain in the backside isn't it! It's like every so often it shakes a rattle to say I'm still here, you can't forget me!

I'm sorry to hear that you lost your dad last year, you mention that he had AF, may I ask if it contributed to his death. I wonder if the pain of losing him and also witnessing your mothers distress was the trigger that set your AF off? In fact at times I wonder if emotional triggers of any type could be the cause of our heart problems.

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My dad had 3 bleeds into his brain. He took Warfarin. He went onto life support but he never recovered. The damage was done. We switched it off .... and he died peacefully after about 10 mins.

He had AF for 15 years prior.

They said at the hospital the bleeds were not related to AF but of course the Warfarin was slow to reverse.

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It does make you wonder about anticoagulants doesn't it!

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That’s why I’m happy to take Apixaban.... easier to reverse apparently!

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I've not thought of it with respect as to how long the effects of anticoagulants last, but surely there's a drug to reverse the effect of Warfarin very quickly?

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6 hours I think

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Sorry to read that blackcrow, it certainly did for me. I lost my mum to a massive af induced fatal stroke,dad had 3 strokes in a week 5 weeks later,survived but lifechanging.At the time i was undiagnosed and put down my weird heart stuff that had just staryed to happen to stress at home n work,but 4 months later full blown Afib! Not a coincidence,and I believe mind and body are just so linked......

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I agree totally ❤️

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There is no doubt in my mind that airing concerns about anything helps a great deal. The link between our brain, gut and other issues is poorly understood but I know to my cost how my anxiety can manifest as physical issues and the fear is no less whether these symptoms are generated by fear or depression or by physical/ electrical anomalies.

Talking whether in the flesh or in the forum is a valuable tool. The knowledge that others have similar concerns is a support in itself.

I have mentioned that initially the diagnosis of a physical illness was almost a relief compared with the awful feelings that accompanied my anxiety and panic attacks ( at that time untreated) My daughter would say at those times " Is it just you?" Said kindly it was to differentiate between a physical concern and my physical response to stress.

So a resounding yes jeanjeannie50 and if you've waded through this ramble thank you

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Yes anxiety and it's effect on our well-being, that's a good point Bagrat. It's interesting to hear of your experience and opinions.

When I split with my husband, who I'd met at the age of 15 and been married to for 25 years, the experience of being on my own for the first time in my life was horrible and for a few months I developed eczema on my face, to me this proves without doubt that there is certainly a connection between mind and physical medical symptoms.

I think for me, talking about things anonymously on this forum is better than face to face. What do others think I wonder?

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Hi Jean. I had a course of CBT for anxiety after I was diagnosed with the dreaded AF & I really felt that the therapist just didn't 'get it' so face to face didn't help me as much as the forum. She asked me if I could recognise the difference between a panic attack & an episode of AF 🙈 say no more

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Silly woman, she has no idea what it's like does she!!

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Holding my head in hands.....!

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Hi wilsond, I lost faith in her after that

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Very pertinent post Jean. Personally I think it's good to express the good and bad your feeling and totally agree with most of the above. It's a massive shock and burden when first diagnosed, and a very dark and lonely place at times especially when attacks, or incidents occur. The coagulation/ meds etc I just try think positively about, and I've always been a glass half full person. Yet still at times get low with sometimes what feels like an onslaught of information and lack of understanding by general medical care. Luckily I have a good EP and I find the people in here very caring,helpful and supportive, in a unique position to understand how your feeling when afib is running amok and your scared, low or just hoping for some light in the dark at times.

That said, I sometimes need not to visit the page and take a breather , reading what feels constant reminders that it's such a complex and at times debilitating condition, as it can drag you down reading about it all constantly . But the support and humour attached to quite a few posts more than makes up for that and does raise spirits and make you think sod it as said above .

Its a yes from me,I think its good to share,something I never used to do to my detriment , good or bad, I think it's good to talk if you feel it helps you personally, and support each other as people In here always do in my experience .

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Another thought provoking reply, thank you Ian for bringing up the subject of positive thinking. I feel sure that this is a very powerful tool to help us cope with our condition. I never lose sight of the fact of how lucky we are to have been born into a rich, progressive country with good medical care. Lets face it some people don't even have access to fresh water, so how fortunate are we!

I can understand too how taking a break from the constant talk of AF on this forum can help us to forget about it a little and get on with living. It's something I think about doing quite a lot and will one day (when my addiction to this site diminishes a little). I just can't bear to think about people, new to the initial scariness of AF, not having all the support they need.

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Your always here Jean, and been a great support for many, including me. Its hard sometimes to stay positive but very important I think with the heart and mind being so closely linked. Occasionally a little time out just helps me forget about it a little and recharges the batteries.

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Please don’t, Jean! 💜

(But of course - with my less selfish hat on! - you absolutely must always do what’s best for you! 💜)

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My opinion is that our condition is indeed a cruel condition, not just for ourselves but our families who suffer all the worries without really understanding the symptoms (even my 5 year old grandson showed so much concern over my condition - so touching but quite embarrassing also).

Right now I have the highest regard for the workers in the NHS (Doctors, Nurses and support staff) for their skill, care and dedication. However I believe the movers and shakers in the NHS to be completely missing the way the NHS should be run. In general treatment is geared to relieving the symptoms rather than the root cause of many conditions, our condition is a good example. Its like having a pan of water, the pan has a hole in it with the water dripping out, we all know the way to fix it is to repair the hole, the way our NHS tends to fix it is to keep putting more water in so it does not empty. It does this as the easiest and short term cheapest way to fix the problem and get a tick in the box of meeting its less than optimum performance objectives.

When considering the numbers of people suffering for so long and the extremely protracted route most have endured to just get the symptomatic relief, I really do think that more work on identifying and fixing the root cause may be the better strategy. In our case does our heart react as it does because of something wrong with it, or is it reacting as it should to abnormal stimulai it gets from elsewhere in our bodies (e.g. vagal nerve, adrianal glands, poor electrolyte or vitamin levels, poor organ functions, poor stomach function, poor eating habits etc etc).

Right now I am embarrass to feel annoyed that the NHS is not spending the money it gets as effectively as it should because of its inefficient strategy. I also feel very proud of our NHS for the work it does and people who work in it. In sort I am confused, relieved that I am symptom free (for now) because of what the NHS has done to me but uncertain if the treatment I have received is the best treatment for my symptoms rather than the best for my condition.

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I understand and agree with you totally. Yet another thought provoking reply.

There are so many different ways of looking at what may cause AF. Recently with a lot of talk about the vagus nerve and it's function I believe we have gone a little more along that path. Do we in this land of plenty, where we live, perhaps need to eat a little less too? So many questions to be answered isn't there!

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Yes the food we eat and the medication we take. There also seems to be a possible issue with the way our lungs work or the pollutants they have to deal with. It really does need some R&D work to get to the bottom of it.

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I suffer from health anxiety so having heart issues is a constant worry. I was telling my friend the other day I feel like I can never truly relax and be happy. I told them I felt like I was constantly on amber alert waiting for the next bout of problems. That along with stomach and other issues. It is a horrible merry go round. I just want to get off. I get sick of people telling me "stop googling health stuff", "try to ignore it!" The best one - "try not to worry!" Etc etc. Well that it all well and good, but if you can't it is terribly distressing. My mental health is very poor and although I have been on medication for it for many years and tried different tablets, I still feel awful most days. There have been many days when I really just don't want to be here. The support for mental health is very poor from the GP in my opinion. You wait far too long to speak to anyone, and then when you do it is hit and miss. I waited 4 months to have any sessions. Then it was just over the internet. I had to type how I felt and she would reply. It was so impersonal and long winded. It would take me ages to type out how I felt. I ended up stopping after 2 sessions as I found it more frustrating and was getting nothing from it.

I feel blessed in many ways that I don't have really major problems but lots of different issues makes me feel rubbish most days. My anxiety effects my heart, breathing, mood, tiredness etc and I never realised how much of a powerful negative impact it can have on you without noticing. It is a true silent assassin!

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I am not liking the health anxiety but that you were willing to air this. It is so hard to share something unseen like AF or mental health issues. I agree that many GPs sound less than supportive but doctors are notoriously bad at saying "I don't know" which compounds things and can leave you feeling unheard.

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Thank you for being so brave and honest in your reply, others need to understand that it is not just the attacks that cause anxiety but the thought of almost being held hostage with the fear of it returning. Those words that you mention people saying to you are hollow platitudes, other people haven't a clue what its like. AF is something you have to experience to understand, which is why we all need each other on this forum.

I certainly don't think there's the slightest thing wrong with searching the internet for answers to our questions, why shouldn't we discover everything there is to know about our condition. Of course some people prefer to bury their heads, unable to cope with what may be revealed.

Are you free from your other health concerns now?

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Jean how true you are. People really dont understand until they have been through it. That's not their fault but generally the way it is. Apathy, Empathy and sympathy are great but comfort from people on forums who have been through the same is so much more reassuring I find. They know exactly how you feel and what you are going through. A guiding hand is always needed. Sometimes people on forums can give you instant reassurance that life is going to be ok / manageable etc going from their own experiences. Whatever makes you sleep better at night is always the way to go. Although my partner is lovely, I feel very alone at times in my health worries. He never has any health problems and is very lucky. What I would give for that!

Currently I have an endoscopy on Monday as I have a hiatus hernia and things are especially bad at the moment. I have been referred for sleep Apnea tests as I wake up gasping for breath at times and I am constantly tired. I am under ENT for ongoing sinus issues and they have now told me I have rheumatoid arthritis from blood tests and an MRI on my spine at 48 years old. Add that to constant heart and anxiety issues and I haven't been away from the hospital in over 18 months, I have my own chair in the lobby lol. "Which clinic today Paul?" 😊

Not ideal for someone who suffers severe health anxiety 😞

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Life can be hard at times and I'm sorry to hear that you have so many health concerns in your life right now. I too have a list of other health problems and sometimes I feel a little overwhelmed by the amount of appointments I have up ahead. So I can understand just how you must be feeling.

Don't ever feel that you are alone, because we're all here to give support whenever we can.

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I think we keep it a secret because most don't understand it. My husband has had more specialists involved than I have had hot dinners! But post heart attack! So people get how serious his condition was. But me, no! People kept saying that I will be better soon like having the flu. And when I try to explain their eyes glass over or they give me the never mind speech. They also keep giving me pep talks. But I'm not depressed just anxious about living with AFib. I have had my first appointment with Talkwork. It's run for people trying to cope with chronic illness. It was so good having someone listen without making comments nor telling me how Ill they are. They are from psychology not medicine but it's not counselling delving into the past but dealing with emotions now. I have high hopes. They are seeing me again next week. So thanks for raising this topic. We need people to know that many of us are like wounded little birds in need of some t.l.c. x

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My goodness, the start of your post made me laugh out loud, what you describe it's so typical of what other people's reaction is to our condition. I have to admit that I absolutely do not discuss my AF with anyone who doesn't have it, other people are really not interested and I don't want to bore them.

Talkwork sounds very interesting, would you please let me know if you feel it really helps you.

Thank you for your input and also making me laugh.

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Yes!!!resounding yes! Eyes glazing over....

Also ,at my early retirement presentation many people came up and eyed me up and down,saying things like "well you got away with it then"or "you look VERY WELL?"

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I was diagnosed last yr with AFib and high blood pressure. I was devastated and felt far worse than when I was told I had aggressive Breast cancer( (2014]. Then I found this site and read encouraging posts most days and the diagnosis AF doesn’t bother me these days. This week I was told I have got osteoporosis (scan done 2 yrs ago when I had a sore back but it wasn’t read properly so I was told it was fine!!!).....so I’ll be rattling with tablets soon! I’ll be joining their group on here for help and advice. These groups are far better than medical folk for support. Have also been clinically depressed (last century) tablets didn’t work for me, but talking therapy (CBT) did. By the way I’m 70 and according to others don’t look like there’s anything wrong with my aching body......I’m slim, walk 4 to 7 miles daily go to Zumba etc. Don’t let the B..... drag you down! LIVE your life as best you can.

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Thank you for bringing this important topic up Jean. jedimasterlincoln articulated so well what many of the AFib family suffer. I think the depression and anxiety aspect (and it may well be ongoing for many) should be out in the open, as those who can help other members invariably do. This forum is a lifeline for many (include me in that), and in the darkest moments it is truly remarkable how many reach out with kindness and comfort. Long may it continue.

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So much of this is relevent and should be discussed how else would we know that we are not alone with our fears. This site is so helpful and usually very supportive. I hope that some medical practitioners do read it and take notice it may help them to help us.

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Thank you Jean - yes, it is very good and useful to be able to discuss the effect AF has on us because it certainly isn't just physical. I think there's a real component of anxiety, which I put into a little compartment and don't look at because there's absolutely nothing I can do to avoid what's coming, good or bad. However, it does take a toll mentally. On top of that, as has been said, it's an invisible condition and after that initial shock the family just tend to forget, rationalise it as minor, and you just become an inconvenience when you get an episode.

I also feel guilt that I may have passed this on - one of our daughters is complaining of heart palpitations and I fear that as she gets older these will develop into full AF - it does run in the family. Being able to talk about these things is very helpful!

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I so agree with what you have written Eatsalottie.

Your last para made me chuckle a little as I recalled my daughter's comments the morning after her wedding. .....all staying at the wedding hotel so next morning at breakfast she appeared ( having drunk copious amounts of wine the night before...) holding her wrist to count the palpitations....." omg, I'm turning into my mother !! "

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Ha! Yes! Mine are worried enough about that already :D

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Hi Eatsalottie, love the name by the way. I have the same fear & guilt feelings as you as my son was diagnosed last year with SVT aged 36 & I pray it doesn't progress to AF

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Oh, thank you! Mind you, I am trying to cut down the food and get healthy! I will keep my fingers crossed for your son as well as my daughter. I know (rationally) it's not my fault, or yours, or any parent's that these things happen, but being a mother you want to protect your children, don't you? Strangely, my parents never talked about their health issues, ever, even though my father was on warfarin and that means it's likely he had AF as well, there aren't that many reasons for being prescribed that!

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I don't know of anyone at all with AF throughout my entire family 🙁

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I'm not sure that it is inherited that often. I've come across it in a few people in our family now, but often it just seems to appear unfortunately. I wish it would just disappear!

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You & me too Eatsalottie 😉

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Think im fairly destined to have ut,mum,grandma,greatgrandma...yet NO one thought hmmm,shes got high bp..family history,fathers side all had heart disease ...!!!!

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Bad, isn't it? Our daughter's doctor seems completely uninterested in the family history.

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Unfortunately, I think these days GP's tend to be Jack of all trades and master of none.

My mother had AF which was only discovered when she was dying from cancer aged 60. I always wondered why she never had a lot of energy. One cousin has it too. My sister had it briefly for a few years, but I do wonder if she still gets it now but isn't aware. I dare not ask her, would get my head bitten off - not allowed to talk about illnesses with her, she's just not interested.

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I'm sure you're right - and they don't have the time or interest to look into it, often. Which is really unfortunate, because it can take time and effort to figure out someone has AF! I think one of the worst things must be to be sure you have it and have the doctor pooh-pooh it because it doesn't turn up when the tests are done. I have a neighbour and I've felt her pulse doing the cha-cha - I wouldn't call myself an expert, but it's certainly AF or something similar - however, her doctor (same practice as mine) has never detected it and just dismissed it. Frustrating.

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Jean, thank you for your post, and everyone for their responses. It seems everyone here "gets" the mental health impact of AF, and yes, we should talk about it and support each other. The only area I think I would like to add is about the development in attitude from the medical profession about AF as the technical/medical understanding has progressed, and that I think these two are running in parallel, and that we have not yet got to the end of the road of understanding.

When I first got AF (1994) and through to my ablation in 2002, the medical and attitude understandings were similar - this is a condition caused by electrical malfunctioning in the heart tissue and it generally gets worse slowly, but don't worry, we'll pop you on warfarin as the main risk is stroke, and after that you'll be fine since AF is not like other heart conditions and is not life threatening. Keep your heart rate down and don't drink coffee or alcohol.

No real understanding that that might well be the case but gad it's a swine to live with, starting and stopping and starting again, feeling physically and neurologically rubbish especially just after it restarted. The Big Pee and all that. The drugs had a poor conversion record, especially as time went on.

But slowly emerged the fact that some folk found AF incredibly debilitating and others much less so - a friend says "I live with it - it's just there, doesn't really bother me." I eventually learned that the way to communicate to doctors that I was in the former group was to describe it as "symptomatic", and I would prefix that with "very".

Ablations came along and for those for whom it worked the stop-start tyranny was ended, though with the sense of waiting for the other boot to drop.

Now, we know and see papers describing AF as two diseases - the first generally in younger, fitter, folk with no innate heart disease, for whom AF was symptomatic and often vagally influenced (at night, after food, low heart rate, and exercise would moderate or even stop an attack). For this group, AF *is* the disease. The other group were older, had other heart issues, and AF was not so bad for them and was triggered by high heart rates. For this group AF is the side-effect. The term Quality Of Life is slowly entering the vocabulary. (Another good term to use to convey to your Doc how bad it feels).

But even now, GPs I know on a social level don't understand this, that the two groups exist, need treating differently, that e.g. beta blockers can be contra-indicated for the former group. And Cardiologists in my view take insufficient recognition of these two types.

I strongly suspect that an internet group such as this is partially self-selecting, that only people for whom AF is a real bother will tend to frequent such fora. If it's not bothering you...?

Even now, scientific papers look at the mortality and morbidity effects of abalation vs. drugs and are too often saying ablation is "overrated", without taking into account the psychological effects of the tyranny of AF andthe advantages of being in sinus.

There are some notable exceptions to the old-style attitudes about AF, such as our dear friend Dr Sanjay Gupta, long may this approach flower. And I use the term "fingerprint" for the collection of characteristics. AF has it's own fingerprint which includes MH aspects and it's that which needs to be got over.

Yes, we do need to talk about the mental health effects of AF, and understanding how the medical profession see it and perhaps don't fully understand us is perhaps important in getting over the MH aspects of AF. Keep the discussion going.

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An interesting post Cliff. It's good to hear the views of others regarding AF, we can find ourselves identifying with what's being said and it opens our minds a little more and helps us become more aware and understanding of the condition.

Your words 'very symptomatic' are cast to my mind to be used when I next see someone re my AF. I always feel safer once my heart calms down to a lower rate of AF, but for some reason it always starts with my pulse racing extremely fast, making me feeling hot and sweaty. My thoughts at this time turn to whether this is going to be the time that the stroke occurs, or will I yet again escape unscathed from the scary condition. What is all that fear about because after 14 years of it I'm still here! Why do I waste my time and stress about what could happen - well, the simple answer is it can't be helped can it!

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Thanks, Jean.

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Thanks for raising this Jean, like many others, I suffered the terror & anxiety of the newly diagnosed, where that one word STROKE strikes fear & is all you can think about in the first few weeks, especially if, again like myself, you are on the cusp of a Chads score of 2. I think that was the only time in my life I wished I was a year older!

I decided that the anxiety was so debilitating that I needed to throw money at by going private - I couldn’t really afford it at the time, but my brother helped out. But for him and all of you on here, I would have been reduced to a gibbering wreck - thank you all from my 💓.

I should say that I was a senior nurse in the NHS for many years, though had little involvement in cardiology. I think this is helpful in some ways as it makes it easier to take on board all the latest research and understand much of the terminology - BUT...it increases the fear factor on initial diagnosis because you have seen first hand the possible outcomes of the bedfellows AF keeps. Once the beast is settled & you have done your research and learned from your marvellous fellows on here, only then do you start to feel that anxiety recede, but there is always a niggle as you know it could come back & bite without warning.

Can I add a word for those of us with understanding family? My hubby was as terrified in A&E last year as I was as they wired me up to monitors, slapped on electrodes & moved me to resus for a cardioversion which, fortunately, I didn’t need as I reverted to NSR spontaneously. Now, if he sees me becoming annoyed, stressed or upset by any little thing, he is on it like a flash to keep me calm. Bless him, that can be irritating in itself sometimes! However he is my Superman 🦸‍♂️ & as important as any pills at keeping the monster at bay.

Pat x

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Well said Pattering, my husband has become such a support, we tend to forget how it affects them when we are taken to A&E and covered in electrodes. Couldn’t do it without mine!

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I think the problem a lot of us have is we live on our own. It must be lovely to have someone really caring by your side.

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I truly admire the people that live alone & have to cope by themselves

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I do think it's more scary living on your own and often wonder how long it would be before I was found, if I collapsed on the floor with a stroke - it's so important to get speedy treatment!

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I absolutely agree that this should be discussed, I am relatively new to this, it took 2 years from diagnosis to finding this site. Previously I was on other sites and oh my goodness, I will say no more about that! I have been through mental torture and the why me syndrome, I have hated and continue to hate the meds and how they make me feel, I have felt so low in mood at times and really needed someone to talk to. Being able to put into words how I feel to other fellow sufferers is a huge and I mean huge relief, knowing I am not on my own. Now after a short time being a member on this site, being able to read about other sufferers I am finally getting some peace from the constant questions going around in my head. This whole experience has not only affected me but also my family. Also finally accepting I have a heart problem and dealing with it, mentally. Hoski is right there is a lot of baggage with AFib. I have paroxysmal AFib and recently had an ablation, I was told I would be better in a couple of weeks, well that was untrue and I felt unrealistic, I thought it had all gone wrong as felt I wasn’t picking up as quick as they implied, perhaps it is for some but it isn’t for me. I wouldn’t have known that if it wasn’t for the support from this site. So lets talk about the mental health issues that walk hand in hand with this.

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Sorry I missed replying to you yesterday, answers to my post were coming in so fast I couldn't keep up with them and at one point walked away and left the answering. It's nice and quiet today so I'm going back to answer so many that I missed yesterday.

It's great that so many people are for talking more about the very real psychological effects AF brings with it. For me it's the absolute dread of having a bad stroke. It's so important to receive swift medication afterwards if you have one and I fear that living alone, no one would know anything about it and I could lie on the floor for days. My father lay on the floor for what was possibly 3 days before my brother broke into the house and found him. Having worked at a nursing home and witnessing how disabling a stroke can be, it's my terror.

It's so annoying how people are given such an unrealistic recovery time for after an ablation. I really hope you will continue to improve and feel so much better.

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I totally agree it should be talked about, & I for one would welcome it.

I find the mental impact is almost as bad as the episodes...

Constantly questioning myself, looking for triggers, feeling so frightened during & after an episode, struggling to fall asleep for fear of being woken up by an episode..

etc etc...

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If you think about it in general the episodes don't cause any pain, or too much discomfort, but my goodness the thought of what could happen that's the terrifying thing.

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You are correct in saying it does have an affect on emotional and mental condition . Not only for the person with this condition but also for their respective partners. Personally we had a very bad time for about 18 months.

It’s such emotional subject that for me knowing at the time that others have felt the same was extremely

Helpful but I don’t think I would to revisit that time again. The brain an remarkable capacity to start to relive it if you start discussing it again.

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Hmm, that's an interesting thought Nettie, re the brain reliving what we discuss. Will sit and ponder over that.

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Well this has brought me down off my chandelier with a bit of a wallop.....fascinating reading!

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Steady lad....xxx

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😁

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So other than swinging from the chandelier, does your AF cause you stress at any time?

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Like most people, I get anxious when I have had episodes outside the so called blanking period but I know that using Flecainide as a PiP has, so far, always stopped it. In my case, it is definitely stress and anxiety brought on by things other than AF which causes me to go into AF and that is what I try to avoid.....

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Hi Jean

Actually I think it is good to talk about it.

I still get a bit scared when it hits the 170s

And feel vulnerable I do tend to check my Kardia too much. My episodes are not really that bad as I normally don’t get dizzy or short of breath, but it has made me vary of travelling. I do it but always feel anxious beforehand. My episodes are about 2 a months and they last between 17 and 24 hours. They are fast for a few hours then settle and I am basically unaware of them, they do make me moody though and tired. I tend to go for a walk which sometimes stops the AF

Best

Britta

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Interesting that going for a walk can sometimes halt your AF. I have to walk slowly when in AF or it makes my heart ache.

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I think to talk about it, helps to realise we are not alone, and to have these feelings and thoughts are not some thing unique to me

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Hi Rex, I think our main fears when in AF are not the actual symptoms we are experiencing, which lets face it are not painful in any way, but of what they could create and our having a blood clot or internal bleed. Do you agree?

Jean

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Hi Jean,

my fear came from how it made me feel. A feeling of doom. It even seemed to make my back shake.

Fortunately a 5 1/2 hour ablation stopped it. But took many month's to feel better.

Now I am OK, 3 years later. But on annual check Up's electrical cardiologist not that happy, as lots of ectopics . So he messes with my head, as have a fear of going through post ablation trouble again.

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I thought ectopic beats were harmless unless you are experiencing thousands of them a day? Have you watched Dr Sanjay Gupta of York Cardiology's YouTube talk on them?

Are you feeling well?

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Good morning Jean.

What an interesting post, and what a massive amount of positive replies you’ve had.

And people responded to my duvet post with such overwhelming loveliness that it's confirmed to me, not just the reasons for being able to discuss all issues relating to AF, but also how lucky we are to have a forum where the majority of members are so very understanding and caring.

I've deleted my post now because I've got a very busy day ahead and hate not to be able to respond to everyone's kindness.

Have a lovely day x

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Hi Hilly. I'm just getting round to checking all the answers to my post that I've notice I've missed in my replies. Messages were popping up all over the place and not at the bottom of my post. I tried my best to trace all of them, but have failed a little.

Yes, it was lovely how people responded openly to your duvet day post, it appears we've all got a bit of that in us - and why not! Such a shame you felt the need to delete it though, as it still needed to be seen and enjoyed by everyone. I really don't like it when people delete posts that may help others. Slap on the wrist Miss Hilly. Lol.

Hope you are enjoying the slightly calmer weather today.

Jean x

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I'd like to say something positive. I got to the point earlier this year, where the AF was so debilitating and frequent that although I meditated each time and really tried very hard get myself in a 'higher frequency', it was so difficult and I was becoming despondent about the future. This proved to be the factor in looking for another option. I've written about this in another post so i'll be brief. I sought help from a fellow spiritual healer... and with her support and my intense working through an issue which had literally caused me 'heartbreak' as a child.....no more AF since then.

So, sometimes when we reach a point of desperation - the only way is up :o) and sometimes we can seek out the help we need and find it! I cannot say I am cured but my quality of life is fantastic now, and whatever happens, I am definitely cured of a lifelong issue that I carried as a very heavy burden.

So, we should never ignore our negative feelings, as they can be a useful signpost. However, If that is ALL we focus on, then we may likely attract more of the same. I made an effort to find things to be grateful for when my body was so ill, and made an effort to tune into a 'higher frequency' of existence, and it paid off.

I am not judging other people; I am not saying there is a right way and a wrong way to live, but I just wanted to offer an account of my experiences with AF...maybe it will resonate with whoever reads this... if not, then that's okay too :o)

Love to us all, wherever we are, and whatever we struggle with as AF patients. May we continue to send each other virtual hugs and warm support XXX

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What a lovely positive post Wendy. Now when you're ready to open your B&B can you also book me in for a few sessions with your fellow spiritual healer. In my desperation perhaps I'll have to come and rent a property where you're living. Ohhh I want to be cured! Please let me know how you progress.

Big hug back.

Jean

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My spiritual supporter lives in America, we communicated by email :o) I don't really want to talk about 'curing'. All I know is I have been okay since, apart from some palpitations now and then.

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As I have said on here before, when first diagnosed with AF (and any other permanent health condition I guess) it is a bit like a bereavement, we are 'in mourning ' for our previous selves knowing we may never be quite the same again .We all handle the 'change in circumstances' differently but often with a degree of fear and depression.

When first diagnosed with P-AF I had a couple of bad weeks :-( , I was getting a lot of episodes of P-AF at the time with horrible symptoms not just breathlessness but shaking, fuzzy-headedness and unable to speak or to walk very well.

Living alone out in the countryside all sorts of thoughts went through my head, will I have some sort of event and be found dead on the floor, will I lose my driving licence and with it my independance. All very depressing and the more I dwelt on these aspects the worse it became.

As the days passed and I 'survived ' each episode and I read and learnt about AF I turned my attention toward changing my lifestyle instead of dwelling on the negative aspects of having AF . I started accepting rather than fighting my episodes and they didn't seem so bad probably because I stopped panicking and realised I could cope with them .

I think many people must be experiencing exactly the same thoughts when first they post on here. Hopefully by encouraging them to talk about how they are feeling ,reassuring them that they are not alone and that there are ways to cope with AF we can help them to lift the low mood that comes with AF .

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I reacted a bit differently after my first AF attack that sent me to A&E in 2005.

They offered me tablets to take every day and I asked why I would need those as I may never have another attack. I just couldn't understand why they would want me to take them so quickly thinking to myself that it was possibly a one off experience. It was agreed that I could just take them if it happened again. Well, it must have been about 6 months before I had the next attack, mind you I just wasn't tuned in to AF, knew nothing about it at all and could have had episodes and not been aware of them. I think I just blocked AF out, buried my head and led a normal life cycling and doing long walks at the weekends when I wasn't working. I really didn't worry about it at all. How that stress free life soon changed!

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" I started accepting rather than fighting my episodes"

Exactly the same with me. It makes a difference in channeling your thoughts to stopping it as opposed to thinking - is this it and panicking 😨. Imo it will help to stop it quicker if you can stay as calm as possible, yes I know.....easier said than done.

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It’s good to share the scary feelings. It’s the biggest thing about having AF. My cardiologist said anxiety and AF walk hand in hand. Strangely, when I was diagnosed at first along with hyperthyroid and had to spend two weeks in hospital, i wasn’t phased a bit. That was 17 years ago. I had the irregular heartbeat, took propranolol and digoxin. Eventually had a cardioversion followed by a total thyroidectomy and that was it for five years. Thought I was cured!! Then it happened again five years later. The intervals got shorter and the anxiety soared. Stress at work triggered AF. From being very blasé about it all I became terrified. Eventually ended up on flecainide and 10mg Bisoprolol. Gradually reducing that. I’m not feeling good as necessary thyroid meds complicate things and you don’t even want to start reading about that and how it is not being treated properly by any medical person anywhere. Had to stop reading that as it was just so depressing. I try to mitigate situations so that I always take my own car so I’m not stranded needing to go home before the person who gave you the lift. Kicking in to AF is the worst bit. Physical anxiety symptoms off the scale. Then it settles or you go back into NSR. Just try not to worry too much but it does limit you. One thing I find is that it’s not the current worries that trigger AF. It’s ones you think you dealt with then it seems to come and get you. Like your son surfing in South Africa. Or going on holiday to a remote island with his wife in some far flung corner of the globe. You think you are dealing with it but the worry is there all the time and you end up getting the AF after everybody is safely back and fine!! Weird. Like everyone else on here I wish it would just go away. Thank you all for sharing. 😃

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Hi Gilli, I'm just catching up with replies to some of the posts I missed yesterday. They were flying in and I've discovered today that there were a few I missed and so didn't answer.

I too have thyroid problems (hypothyroid) and so can identify with what you are saying re getting correctly medicated. Almost impossible isn't it!

Yes, we certainly need to share our scary emotional feelings. I was thinking about AF and what it was that worried us so much about it. It doesn't really hurt after all, can make us feel a bit off colour, but the main thing I think which builds the fear in us is related to what it could cause and I suppose that is a blood clot or bleed. Do you think I've summed that up well, or have I missed something else of concern?

Jean

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For me, it is the intense feeling of dread and anxiety that I experience when I lapse into AF contrasted with the feelings of calm when I am in NSR. I realise now that I am not working that probably a lot more of my anxiety was provoked by the actual AF rhythm. Unless I became tachycardic I didn’t realise I might be in AF. I don’t know which comes first to be honest. They seem to chase each other in a vicious circle. I think I worry that I might be on the wrong meds. That my heart might stop. That I will feel bad when I’m out or away from home. I suppose we have to make friends with it and not let it rule our life. I take comfort in the wise words of Jesus. “ Who of you by being anxious can add one cubit to his lifespan?” I think of that very true saying and it does really help me get things into perspective. 😃Thank you for the thread starter. I think it was worth posting. Don’t you?

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Yes, I certainly think it was worth posting. What a lovey group of people on this forum, all willing to share their views.

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Look at the number of posts on this thread Jean.....so any great points. What a fantastic forum xxx

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Yes, what an amazing, supportive group of people we have on this forum. How lucky are we to have them by our side. xxx

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Those of you who have followed my journey since I joined this site know I’ve had a tough time but tackled all the challenges with a positive attitude. It’s great being back at work but I was at a business women’s lunch 2 weeks ago in a private dining room with about 20 women. After the guest speaker’s presentation we went around the table, each saying a few words about our take-aways from the event. Before I knew it I was tearing up and talking about how, after my year from hell, I was trying to redefine who I am personally and professionally. The women (none of whom were known to me before the event) were amazing and supportive. One woman gave me her card on the way out and invited me to have coffee with her - she’d recently returned to work after battling cancer. It’s inspired me to write about how employers can support their staff through major illnesses. My employer has been amazing but I know many others haven’t been as lucky. Thank you to everyone here and hat has supported me too. I feel like I found another family when I found this forum.

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Hi Kaz, somehow I've managed to miss answering your reply to my post. Posts were appearing in all sorts of odd places and not at the bottom of my post (that's my excuse anyway and I'm sticking to it).

Yes, I remember your year of hell and at one time I did wonder if you would ever get well again. Thank goodness you did and how emotional it must have been to share that story with the ladies at your business women’s lunch. Did you feel drained after doing that or a sense of relief? I think when we open up and share a traumatic story with other women, then somehow they warm to us a lot more. Though I think that sharing that with men would have been very different and made them feel uncomfortable. What do you think?

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I agree Jean. The women were wonderful, non judgmental and very supportive. I’m not sure I would have felt comfortable saying the same thing in a room full of men. I’ve done a lot of work around gender issues, especially in the workplace. Men and women certainly have different ways of communicating. As a vast generalisation, women will listen and just be there whereas men want to fix whatever problem you have.

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Jean

Because time is a bit precious right now for me I had decided that I had best not join in this discussion. However I find myself with half an hour of peace so here we go.

You have the ability to post some pretty thought provoking subjects and this is no exception. You are going to need a secretary soon to deal with the admin.

My contribution is that I have often commented on the mind games that AF plays with us all, to a greater or lesser extent, depending on the individual.

I found this wonderful forum a few years ago and to start with could not believe how many others had the same fears and problems that I had experienced for decades.

It was about 1991 when I first had this strange feeling in my chest. For so many years I never met or talked to anyone else who had the same heart condition. I also felt that the doctors understood absolutely nothing about what torment I was going through.

On that first occasion I was admitted to hospital for a week and I remember overhearing a doctor talking to one of his team describing me as a “frightening rabbit in the headlights”. That did nothing to help me it upset me enormously to be honest.

I was very scared and had no way of dealing with the situation.

Years of cardioversions and latterly ablations coupled with the awful uncertainty has taken its toll on me mentally. I have now been lucky free of AF since the beginning of March (a record for my dear old heart), thanks to my wonderful EP Dr Ullah. Yet the slightest blip in my pulse rate still causes me to feel my pulse for reassurance.

Having PAF has made me obsessive and I cannot find a way out of it. I have tried counselling , hypnotherapy and Chinese medicine resulting in no permanent cure for my inability to put my mind at rest.

I did however find that meditation and deep breathing helped whenever I had AF, Atrial Tachycardia or multiple Ectopics.

I think the years of torment and hospital visits have ground my mental resilience into the ground. I have now taken the view that I am stuck with it but that I must do my best to help others who have only just started this journey.

I hope my comments are not viewed as being negative, I have really tried to be upbeat as best I can in the past but this is the truth of the matter.

Pete

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Your comments are certainly not negative Pete, they're spoken in a truthful way straight from the heart. I'm sorry to hear that you've suffered so much over the years that you've had AF and I'm sure that you're not the only one on this forum that has felt the way you describe. It's only by giving honest opinions that we can understand the true effects of this condition on members here.

I think we can all understand fear in relation to AF attacks especially when our hearts are beating at an unusually high rate. Saying that it has got a little easier for me to cope with after 15 years. I think I've just about got it into my head that I'll survive those scary episodes.

I'm very much hoping that you will be AF free from now on.

Jean

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I totally agree that talking about the effects of a chronic condition, such as AF, has on ones mental health is very very important. The fear and anxiety it can cause can be crippling for many at times , and it can be so comforting to know that one is not loosing the plot totally and there is a valid reason why one has become so anxious about doing the simplest of things. I feel that tiredness through lack of sleep due to AF attacks at night, can often be the drain on the nervous system which in turn will effect how one copes with everyday life. It is such a shame that after all the amazing treatments and procedures, operations etc that the Medical profession can now perform, they still fail to link the mind and the body to make up the whole person. Surely that is not particularly a "way out , unscientific concept"?! I had suffered with PAF for over 20 years (started out of the blue one Christmas Eve when I was 37) before I had a so far, successful cryoablation in 2016. The ablation has improved my Q of L 100% but I am forever mindful that this is possibly not permanent . Thank you Jean Jeanie for bringing up this topic. This forum really helped me mentally and emotionally prepare for my ablation and I think it is important that it continues to offer practical information about AF and its symptoms and provide understanding on how medication can effect different people and an empathic "listening ear" to people's worries and concerns. It can still also be a positive forum to visit too as reading about other people's experiences can often put ones own into perspective and generally people who reply are very kind and understanding to each other. We all have something in common that links us and let that provide a strength for those that need it most during what can be some very difficult scary times as one gets to grip with "the beast" that is AF!

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Yes, trying to go to sleep at night after AF has struck is virtually impossible (mine is always fast). I lie there hoping I'll nod off, but then every so often will think, I wonder what my heart is doing now and feel compelled to check. I guess the hope is that it will have returned to normal rhythm.

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I use to be fearfull about going to sleep when in P-AF in case I didn't wake up ever again , then I said to myself 'you silly woman you would never know if you didn't wake up anyway' :-)

Now I am relieved if it is bed time and I can try to sleep it off,the thumping heart beat competing with the whistling in my ear (tinnitus) so I put the radio on very low and drift off. The AF is usually gone when I wake .

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Last time I had AF was the first time I convinced myself to go to sleep. It was kind of nice being able to do that, maybe a form of acceptance that a fib wasn’t going to kill me.

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You know Hoski, to be honest I think I'd rather die than have to live with the results of a severe stroke. I've seen people unable to eat, fed by a tube in their stomach, can't speak, can't move, they just lie looking out onto a world they really don't understand.

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Yes I feel the same. I told my husband I would rather die younger that to be debilitated where I couldn’t potty myself, etc. I’m reluctantly having a knee replaced on 9/5 and that is my biggest fear,all the “ what if’s”. Nurses really are the worst patients as we have seen the devastation when things don’t go as planned.

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I think it is safe to say with 149 responses so far that this is a needed topic. I’m glad you asked the difficult question. Thanks Jean!❤️

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Jeanjeannie50, 👍🌸🌺👍🌸🌺👍

You have been an incredible, thoughtful and considerate host to your posted and popular discussion by responding with likes and often commenting with personal details to so many of us. You’re amazing. Thank you for being you because you are simply awesome! 😊

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thankyou Jean for your reply. Yes feel OK , specialist thinks ectopics are the Heart trying to go into af. Suggested beta blocker but heart beats slow when sitting still. Good he said up to me whether I take them. But must take the pradaxa which I do. Did watch Sanjay not that helpful. I have type 1 diabetes as well, which I can never forget about trying to stay out of hypos and hyper.

My diabetes specialist thinks my heart problems complication of the diabetes .

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Oooh, can't you try and get your diabetes under control. I think I've read recently that it can be reversed by diet and exercise no matter which type you have? Is that easier said than done?

Glad to hear that you are feeling ok.

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Thankyou Jean, diabetes under control as best as can be. I make no insulin unlike type 2 , so all type 1 are less stable. Trying to get insulin doses right with exercise and diet . It's just a challenge.

thankyou again for your concern .

you are doing a good job , and this post was a good idea .

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