Summing Up - Psychological Anguish - Atrial Fibrillati...

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Summing Up - Psychological Anguish

jeanjeannie50 profile image
60 Replies

Summing up, after my previous post, I guess it's the 'what ifs' that creep into our minds that are the basis of all our psychological anguish!

We have an attack of AF, just how many of them have we come through unscathed? So the odds are high that we'll get through this one too and be fine again. Do we really need to let the 'what ifs' enter our head and cause us stress?

The risks we sometimes choose to take in life are at times a little like Russian roulette. We take a chance with a medical procedure that is most likely to make us so much better, but that little voice in the background whispers, but what if. The balance in general is for the best outcome, so I think we need to decide to do our utmost to think positively, tell that inner doubter inside us to be quiet and think about how well we're going to be.

We create our thoughts, no one else is in control of them but us. We really do have the choice to decide whether to think positively or negatively. Which type of person will you strive to be?

Do you have a way to control negative thoughts that you would like to share?

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60 Replies
Desanthony profile image
Desanthony

Always try to be positive. I am far better with my own problems than with others - I worry more about them than about myself and, I think deal quite well with everything in the circumstances. Had a very wayward youngest son and had to manage to keep private and professional life separate for many years otherwise I would have been a liability to my team. I managed to find a way of dealing with this and comparmentalising things in my mind and leaving his problems at home when in work. Find that works with most things. As for the what ifs I try and educate myself as much as possible on procedures etc and believe I have made the right choice and done as much research (what we used to call "due dilligence") as I can to ensure that anything I have is successful. If it isn't then I know no one is to blame it is just something that happens to not just me but others as well. I am not always as calm as I should be or as this seems to be making out though. Wouldn't be human if I was.

jeanjeannie50 profile image
jeanjeannie50 in reply toDesanthony

You are so right in your reply, I guess the most natural way to respond to AF at first is with fear. It's only after a few years and lots more attacks, that we can perhaps just see it for what it is - a darned nuisance!

Desanthony profile image
Desanthony in reply tojeanjeannie50

Yes it is a great nuisance to all concerned.

10gingercats profile image
10gingercats

Yes. I agree Jeanjeannie.We alone are in control of our positivity.I have been guided in this matter by the example of others throughout my life but it has taken a while to 'get there'.Each example has built upon another until some of the others attitude rubbed off on me. That is how it worked for me. Some of these examples have been from personal contact and a few from celebrities...as in Yitzak Perlman the violinist struck down by Polio as a child whose early history is worth a read.

jeanjeannie50 profile image
jeanjeannie50 in reply to10gingercats

It's interesting, as you say, how other people can influence our lives, reassure us and help us cope.

For me, I have to say that most of that has come from my having been on this forum for so many years. I think I could write a list of (and have also tried) every natural AF cure that has ever been mentioned here. The only thing I've discovered that helps most, as I'm sure most of us regulars here will agree, is changing to a more plant based, additive free and natural diet.

Thank you for the book recommendation, have made a note of it.

Tako2009 profile image
Tako2009

Hi Jeanjeannie

I suffered with panic attacks a few years ago - before I developed and was diagnosed with AF - quite different things but I accept there could be a link.

What helped me at the time was CBT - I was lucky enough to be referred for counselling and then did the 8-week mindfulness course. I’d like to say I live and practice CBT and mindfulness every day but of course I don’t, life gets in the way sometimes. But every now and then, when I feel I’m slipping back to my old anxieties and worries, I try to get myself back into a regular practice again.

Two things that help me personally- one from mindfulness and one from a lovely yoga teacher.

When I can’t sleep or relax I visualise my “Worry Box”. I can describe this box in detail, what colour, how big, where I put it on my shelves. Then - usually when I am lying awake at night worrying about my AF starting, or anything else - I put that “worry” in my box, and leave it there, not to forget the issue if it’s important, but to leave it there while I sleep, with a promise to deal with it when I wake up. Surprisingly powerful if you practice this regularly.

The other thing I do - especially mid AF - is to do a short mindfulness 3 minute breathing meditation. Moving my focus back to my body and my breathing, even back to my AF, is how I can deal with all my panicky thoughts and anxieties - to recognise them as just thoughts and not reality. It allows me to concentrate on the physical aspects of the episode and what I can do to minimise the impact - deep breathing etc.

I only have rare AF episodes - maybe 4 or 5 a year - and in fact I am at home today resting after a nasty one last night!! The fear in me - always- is that I won’t get back to NSR. I always have reverted back to NSR in the past, but it’s hard to shake off the fear.

Thanks for posting this I’m really interested to hear how others deal with their fears.

Liz

Buffafly profile image
Buffafly in reply toTako2009

I was told about the 'worry box' technique many years ago and it is very effective. I also have a 'worst case scenario technique', I think what is the worst that can happen, then prepare for it, either practically or in my mind. Then it's dealt with. Of course it's the 'unknown unknowns' we fear most 😰

dedeottie profile image
dedeottie in reply toBuffafly

I have done the worst case scenario trick for years. At first I think it worked but then it backfired as I found that once I had worked out the worst case scenario, that was what my brain thought was definitely going to happen. These days I allow myself a specific amount of time to think/worry about the problem then I mentally lock it in a box until I am ready to deal with it. This works for now but I would love to read of other strategies. Interesting post. X

jeanjeannie50 profile image
jeanjeannie50 in reply todedeottie

I've don't think I've ever done that worst case scenario trick ever with regards to AF. I'm not trying to make out that I'm the perfect person, because I'm certainly not. I guess I'm fortunate not to be a worrier and am always quick to apologise if I offend anyone and never allow bad thoughts or feelings to fester. If I find myself knocked down, I get up and think what's the best way to move on now. With AF attacks I just remind myself there's a lot worse things I could have. x

jeanjeannie50 profile image
jeanjeannie50 in reply toTako2009

What a fascinating post Liz. I will certainly try some of the suggestions you have made and I really must take a mindfulness course. A good recommendation of yours for all of us.

Thank you for being so open.

Nonam profile image
Nonam in reply toTako2009

I'm newly diagnosed AF and because of the anxiety and fear I have I am having CBT therapy which has just started. I'm also using meditation apps to help me relax be positive..try insight timer lots of help and it's free. It's mainly at night the fear comes at sleep time which impacts on my sleep so I'm usually up during the night. The worry box is a good way to deal with worried..I like the idea to think of thoughts and not reality. Thanks for sharing

Kevinder23 profile image
Kevinder23

That is so true when I found out I had A/f all the negative what ifs were all I could think of and your post sums it up perfectly non of the worst outcomes have happened yet godwilling , they never will! .You can walk around thinking this is the day something bad will happen or if you try to be positive and this could be a loverly day! We’re alive it’s Sunday I’m at home not working so time to breathe I have 6 beautiful grandchildren .I know we should just enjoy the day , I do feel A/f does take anyway peace of mind ,but I suppose we have to just try to find it again by thinking positively! Thought provoking post and at the end of the day everyone has there problems, 😘😘ps although I really do miss 1/2 glasses of wine very occasionally but too worried to try I’m sure all my worries would be put in perspective then 🙈🙈😍

jeanjeannie50 profile image
jeanjeannie50 in reply toKevinder23

I think when we all start out with AF we believe there's a chance it's going to kill us. All we know at that time is that the heart is one of the most important organs in our body and one of our biggest needs for life. We believe it's damaged and not working as it should.

For me I like to think of it this way: Do you remember in the long distant past when we would be listening to the radio and suddenly someone would switch something on that would cause interference and crackling. That interference didn't have a long term effect on our radios, it was just for that time when something else electrical stopped it from working perfectly. I think if my heart in the same way, once what's upsetting it has passed, then all's well as it was before the AF attack

Of course some people have permanent AF and their hearts can adapt to that and still function well. Last winter when I went into constant AF for several months my body adjusted to and I can honestly say that I led a fairly normal life.

I understand your worry re drink causing an AF attack, my last one was caused by pulling up brambles - won't be doing that again and hope you'll be wary of wine now. Does one glass have any effect?

pottypete1 profile image
pottypete1

Sometimes I think I can be very measured and logical when I think I can help others.

However the truth is that I am utterly useless where my own emotions or mine games are concerned.

I don’t think that I am unusual in this respect which is why this forum is so very valuable.

Once again thanks for raising a very important aspect of life with AF.

Pete

Love100cats profile image
Love100cats in reply topottypete1

Some are just born to be carers and become very good at it so have the label of being reliable, dependable and conscientious. We are like bouncing balls. Every time we go down we come up again. Or do we? Watch the ball bounce without touching it and eventually it has no bounce left! That is the risk that home carers take. So the difficulty lies in recognizing our own needs before it's too late. Listen to those who know us well when they give us advice. One piece of advice that slowed me down was ' How much is your yes worth it you never say no?

pottypete1 profile image
pottypete1 in reply toLove100cats

One of my old bosses who was also a friend bought me a book entitled “when I say no I feel guilty “. I must admit I am very very bad at saying no.

This book may help someone with self preservation.

I am useless at taking my own advice

amazon.com/dp/0553263900/re...

Pete

jeanjeannie50 profile image
jeanjeannie50 in reply topottypete1

Useless at taking your own advice Pete, me too, when AF strikes I want to shout help what shall I do?

Bagrat profile image
Bagrat in reply topottypete1

I am just starting to say no occasionally. I've realised I don't need to have an excuse and I must say it feels good. I need more practice though and it's taken far too long.

irene75359 profile image
irene75359 in reply topottypete1

My younger sister gave me some good advice on saying no. Whenever she is asked to do something she is unhappy about, or just not keen on doing, she never says an outright no. She listens, pauses, and says (quite kindly) 'I don't know about that. Can I think about it?'. She is never chased for her answer.

in reply toirene75359

Great advice

irene75359 profile image
irene75359 in reply to

It is! It is her standard reply (even when she intends to say yes); she spent years always saying yes immediately and going through the regrets that go with that. Personal circumstances meant that had to change.

reinaway profile image
reinaway in reply toirene75359

When my children used to ask for something that I had to think about doing or giving my stock answer was'we'll see'. It wasn't until I happened to overhear one of them say to another ' Mum says she will' that I realised they had found me out!!😄

irene75359 profile image
irene75359 in reply toreinaway

Ah, you have taken me back - that was my Mum too!

Another brilliant piece of advice was from my neighbour and friend when my two girls were young. She counselled never to underestimate how children can wear you down, and to think very carefully about saying a blanket 'no' to things that really aren't important. And it really worked; when I did say no my girls rarely pushed for long.

Finvola profile image
Finvola

I find when my anxiety level is raised by other factors, unrelated to my AF, the 'what if's' are much more active and intricate, weaving and ducking some of my solutions. My 'what if's' prefer the early hours of the morning when everything is at a low ebb anyway.

Normally, I deal with 'what if' by countering with 'what if not' and concentrating on the positive with Mindfulness and breathing techniques. Star-shaped relaxation also helps. (Relax from the extremities inward to the body core and concentrate like hell on driving everything else away.) I find it useful to have solutions ready to the what if's - especially those that attack the exhausted mind and stop much needed sleep.

pottypete1 profile image
pottypete1 in reply toFinvola

That's a point you are so right.

I have all these pesky "what if I am stuck like this for the rest of my life" whenever AF strikes and then I calm myself the best I can by saying to my self "what if not" because in all the nearly 30 years of AF my heart has always returned to NSR by hook or by crook.

Pete

jeanjeannie50 profile image
jeanjeannie50 in reply toFinvola

Hi Finvola, I love the sound of your star shaped relaxation, will give that a go.

My 'what if's' make me think, what if I had something far worse like terminal cancer, or had lost a limb or eye. My thoughts also return to the poor man I saw when in my late teens, he had half his face missing and I went dizzy with the shock of seeing him. Now those are real things for concern, not that my heart is having little blip and will soon be back to normal.

jeanjeannie50 profile image
jeanjeannie50

I certainly share your outlook John. There are far worse things we could have wrong with us, than our heart having a little blip!

Patchwork123 profile image
Patchwork123

This group has given me so much positivity and reassurance, I was always afraid of something detrimental happening to me but reading all the positives from other members l am now quite relaxed when my heart starts to misbehave. So a big thank you to all fellow Afibers 😀

jeanjeannie50 profile image
jeanjeannie50 in reply toPatchwork123

I think that this group is unique in every way. Our requests for advice are very often answered by someone whose reply shows that they understand exactly what we're experiencing, and my does that mean the world to us! Instant reassurance that we're not alone and sometimes even advice on how to cope or cure.

Long may we remain to be the best forum ever!

Patchwork123 profile image
Patchwork123 in reply tojeanjeannie50

Yes, well said

Bagrat profile image
Bagrat

As well as the what ifs, I can get beset by is it isn't it ( something to be concerned about), should I shouldn't I ( seek medical advice).

Usually I use breathing exs and a mindfulness body scan and remind myself that I have had these symptoms before and they just went away. The mind body connection is so strong

I have always tended to overthink every situation and as a result my thoughts are easily transformed into physical symptoms.!!!

Reading all these experiences and coping mechanisms is very helpful. What a resilient bunch we are. Resilence is something that can be learnt and involves being slowly exposed to a variety of increasingly challenging situations .

We don't get that choice but manage anyway!!!

jeanjeannie50 profile image
jeanjeannie50 in reply toBagrat

So true Bagrat, without this helpful forum we would all be floundering and know so little about our condition. Just being made aware that others have experienced the same symptoms, gives so much reassurance and calms our fears. So with less anxiety our AF can calmly subside.

JanettePearson profile image
JanettePearson

The thing I find most difficult is the fact that this is an invisible condition. When I feel awful I still carry on with everything that's expected of me because if I don't I feel I will be judged as a fraud. Yesterday for once I actually told my family that I was going to be selfish and have a quiet day as I didn't feel good. Still had to get my mum showered, go shopping, sort washing, organise tea for my mum and answer her constant questions. I feel that one day I will just collapse and people then might realise that I'm not faking it!!

CDreamer profile image
CDreamer in reply toJanettePearson

That is really hard Jeanette, looking after another when feeling ill yourself. I do hope you have some sort of practical and psychological support you can call upon? Do you have a carer’s group locally?

JanettePearson profile image
JanettePearson in reply toCDreamer

I don't go to a carers group as I'm not sure it's for me. I don't have any support except from friends who get me out of the house. My mum has lived with me for almost three years now and it's taken it's toll mentally and physically. My mantra is "This too shall pass" but I wish I knew when!!! AF is getting worse so I am going to be more selfish now and say when I can't do things for others.

Bagrat profile image
Bagrat in reply toJanettePearson

I think you are on the right track. If you are unable to cope everything unravels so YOU are your no 1 priority. Carers groups can be a huge support and people's experiences can make your life easier too. You could always go once, gather info then never go back if its not your thing!!

in reply toJanettePearson

I took my difficult mother in at age 89, she was a very negative person. She lived to be 97. Looking back, I regret having her here. It would have been better to have found her a senior apartment where she could be around people her own age. It was rough 8 yr

JanettePearson profile image
JanettePearson in reply to

My mum is 93 now and still has a few years left in her. This isn't how I expected to spend my retirement but it just happened whether I wanted it to or not. She was awful the first year, so negative and depressing and I'm afraid I don't feel for her what I should. My health is deteriorating and it's time for change!!!

in reply toJanettePearson

I do know how you feel. I have said many times that I loved my mother but did not like her many times. There is a great book I’m reading called Running On Empty by Jonice Webb PhD about childhood emotional neglect and how it affects us in adulthood. Very interesting reading, helping me get rid of guilt that isn’t my fault re my mother.

JanettePearson profile image
JanettePearson in reply to

I have written that down. Thank you. X

in reply toJanettePearson

It was a little disturbing when I started it as it stirred up childhood memories I had forgotten. Biggest thing with my mom is she couldn’t give me what she didn’t have. She was raised in a violent alcoholic home. My parents raised me as well as they could but book points out often emotional neglect is invisible, usually not intentional. The book helped me understand why I am the way I am and to quit feeling guilty for not having warm fuzzy thoughts about my mom.

CDreamer profile image
CDreamer in reply toJanettePearson

It’s not selfish to care for yourself as if your Mum is dependant upon you then you need to keep yourself well for both your sakes. My heart goes out to you.

Accept as much practical help as you can get. Ask for what you need. Use on-line shopping for as much as you can - personally I use Ocado as you are not restricted to one supplier & the guys who deliver are just so helpful.

I wonder if you have looked at the Carer’s Group on HU? I have seen some really good info posted - just look at the headline & decide whether or not it would be supportive for you.

Best wishes CD

jeanjeannie50 profile image
jeanjeannie50 in reply toJanettePearson

Janette the words that hit me from your post were 'this is an invisible condition'. It certainly is, but you know I've never really thought too much about that aspect of AF. I think perhaps even GP's don't fully understand what we're going through when we're in AF, but looking so well. My youngest daughter did show concern once when I struggled to keep up with her family's walking pace and was doing a bit of huffing and puffing. I'm not one to put on the sad, serious, poor me face and can still laugh and have fun - well of course we can! Not being able to walk fast is one of my main AF symptoms, it can make my heart sore and I also get breathless and I guess you may well be the same.

In your situation I can only guess that having to do things for others will keep you more fit, than those with AF who just sit. It must be hard at times though for you to struggle on, when feeling particularly bad.

Bib hug my friend, you're a fighter and can be proud of that.

irene75359 profile image
irene75359 in reply toJanettePearson

Janette, your situation sounds as if it is heading towards intolerable, especially with your AF getting worse. Do you have any chance of respite care, or can you let the team in charge of your Mum know that this is getting too much for you? Or would she be eligible for visiting carers? You need to look after yourself and this stress can't be helping your AF. For what it's worth, my mother (who died last year at 97) was adamant that she was not going into sheltered accommodation and likewise was appalled at the thought of carers. But in the event, she loved where she moved too and the carers visiting added a whole new social dimension to her life, and her world expanded again - just a little.

Please do look after yourself.

Sfhmgusa profile image
Sfhmgusa

As someone who has only recently started to have regular episodes of PAF I was really knocked back by them. My wife described me as "despondent" and I agree. My two great fears were 1) is this going to kill me or hugely debilitate me in the next few minutes hours? this one must have made it worse! 2) Is this "it" now will this never stop? at first the PiP I was recommended (Flecanide 50mg once & then 2 hours later) just did not work.

I still feel really down when I feel the Af start (for me it is flutter feel in my stomach) but Knowledge and better medicine practice seems to have helped a lot

For Knowledge.... This group and a very good Cardiologist (Ben Brown in Manchester UK) really helped with fear number 1. Understanding this and hearing of so many others who are having pretty much normal lives is a great help. Yes I don't like it, but actual symptoms are, as yet, for me not debilitating more a bit sapping.

Now that I am on daily Flecamide (50mg twice a day) and when I get an episode rest & up to 2 x 50mg more have stopped the Af within hours where previously it was 1-2 days, I am less frightened of it never stopping, and have confidence the drugs can & do work.

I think for those around me I am a bit hyper alert to triggers at the moment, and this can be boring/worrying in equal parts to friends and relatives, so I am trying to keep my "What actually causes this?" thoughts more to myself and my long suffering wife! :)

Main ones are... Worry and stress (about AF) the further that erodes seems the best for me Short term exertive work is another Not Exercise generally, and over eating a full stomach seems to be part of the cocktail of triggers, but In all honesty there is no pattern yet that is clear.

When I am not in AF (most of the time) I have to say I appreciate each and every day more & more and this certainly is a good thing Life is precious

S

jeanjeannie50 profile image
jeanjeannie50 in reply toSfhmgusa

Sounds like you have it all sussed and a wise head on your shoulders.

You may be aware that a lot of people on this forum have turned to a more plant based diet and cut out eating anything that contains artificial additives. In general alcohol and caffeine are best avoided, some find that taking magnesium taurate or citrate has helped greatly to reduce their symptoms. Sugar reduction can also help as does losing weight if necessary. Yes, stress and the over eating you mention are well known triggers too.

Oh what a pain it all is, but we'll never stop seeking a cure.

Wishing well.

CDreamer profile image
CDreamer

I think you have it Jean - the what if’s are killers. My strategy is always to turn that around and say “And what if I am absolutely fine and what if this drug/procedure really is the best in these circumstances and I didn’t do it because of the ‘what if something goes wrong’ sparked the fear which stopped me.

Distraction is good - audiobooks for me.

Daily Practice of Mindfulness teaches you how to be beware of our thoughts - we really cannot stop them - but never get stuck on them so we observe the thought but allow it to flow naturally away - bit like a stick being carried by a river. This does take patience, time and practice to achieve and is usually learned in a group setting but apps such as Calm and Headspace and loads of others can be really good.

Focus on breathing - when you really focus on your breathing you find you don’t think - because you can’t. Here is a link to 5 breathing techniques to relieve stress from Dr Chatterjee with video drchatterjee.com/5-breathin...

Breaking the worry cycle and becoming an observor of your own process I found was hard but achievable. Took time - a long time - 2-3 years of coping with AF and other illnesses. Took knowledge and research and therefor heavy on my personal resources but persistence is key. It was never one thing but putting everything together in a way that worked for me.

Thanks for the Posts Jean x

jeanjeannie50 profile image
jeanjeannie50 in reply toCDreamer

Thank you for your interesting and valuable tips CDreamer. I love the extensions you've added to the 'what if'.

“And what if I am absolutely fine and what if this drug/procedure really is the best in these circumstances and I didn’t do it because of the ‘what if something goes wrong’ sparked the fear which stopped me."

I see you as the very wise owl on this forum and thank you for making us think outside the box a little.

Will cetainly be studying the link you've put here. x

Melleray profile image
Melleray

Hi Jean - I have just read your previous post. In my view the psychological strain of living with something which can jump out at any time and attack, is completely ignored by the medics. i was being taken to A&E every few weeks with debilitating AF attacks (pulse soaring to 250 if I moved), this caused great anxiety, not only to me, but to my daughters.

For everyone's sake, I decided to take the final option and went for 'Pace and Ablate'. To cut a long and anxiety ridden story short. Since I had it done in February, I have had one horrendous attack of Ventricular Tachy where I nearly passed out. I live alone, so it was very frightening. Spent 5 days in hospital. They didn't know why it had happened. Five different doctors gave their mostly different diagnoses, and one made a joke of it. I wasn't laughing. Tried some different meds. It got worse. Paid for a private consultation. Had booked a craft stall at a local market, so went ahead to try and get on with my life. Had another attack there, which turned out to be AF and the pacemaker did not deal with it. Back to device clinic where more adjustments were made. Now, my heart feels unstable with PVC's regularly - this had preceded the VT attack - so I am staying at home, I am afraid to go out. I cannot work, I cannot look after my grandchildren. There is no support at all, except here.

jeanjeannie50 profile image
jeanjeannie50 in reply toMelleray

Oh Melleray, that's a sad and frightening experience you've had. I feel very concerned for you as it sounds as though you've just been left to get on with it! I'm afraid I know nothing about pacemakers, so I'm going to alert CDreamer who has and hope that she can give you some wise advice.

Always here for you as a concerned friend, so PM me at any time.

Big healing hug my friend

Jean x

Melleray profile image
Melleray in reply tojeanjeannie50

Thank you so much Jean - it warms my heart to speak to people who I know understand how we feel. For all AF sufferers or any arrhythmia, one of the main problems is the uncertainty. I really don't think the medical profession takes on board the weight that this places on the patient. We are left very much to deal with it ourselves. This is why I made enquiries at the heart centre to find out if there was a support group, but to no avail. I guess my post was also to say that the 'pace and ablate' is not the cure all we are led to believe it is.

CDreamer profile image
CDreamer in reply toMelleray

Hi Melleray - so sorry to read your story. Pace & Ablate was never intended as a cure - it’s just a last resort option for those that nothing else helps & if you were led to believe anything different, then that was wrong.

I was lucky enough to have a very exceptional EP who told me that if you have Pace & Ablate you really need to have a bi-ventricular PM as when only one ventricle is paced the vaentricles can get out of sync - causing other problems. Getting that bi- ventricular PM is the hard bit as I & my EP spent a long time arguing the case to get the funding as this type of PM is quadruple the cost of most 2 lead PM’s that are implanted - so I know I am very lucky. What type is yours?

The PM worked so well for me that so far I have only had 2 AF episodes with only 1 being symptomatic that we have postponed going ahead with the AV ablate procedure.

I am sure (hope) that it was explained to you, however, that PC & Ablate will not stop AF - it’s just that about 60% of people find that they are far less symptomatic when the ventricular rate is steady. I also have narrow QT complex, A Flutter and can get Brady/Tachy so what I think happens for me that is that AF is triggered by HR dropping suddenly. It seems as though that PM can be really helpful in this scenario.

Getting what is right for you though isn’t easy is it? I’ve been at this for 12 years now & haven’t found one clear answer - it’s very complex as so many contributary factors.

I agree that you have to become your own expert advocate - otherwise the lack of expert, experienced consultants can mean you go around in circles. I have certainly had my moments with several local cardiologists who now basically bump me as ‘the awkward patient’.

Not only in Cardiology - experienced similar with Neurology.

Best wishes CD

Melleray profile image
Melleray in reply toCDreamer

Thanks for your reply. The cardiologist I went to privately did explain that in some people, having the pacemaker implanted is enough and it reduces the AF attacks so significantly that the AV node ablation is not needed. I think this may have been the case for me, but sadly, my EP did not tell me this, and when I tried to ask as many questions as I could, he did not mention this possibility. If he had, I would have waited to see how my heart behaved just with the PM implant. In hindsight, I think it would be very helpful for an informed advocate to be present at these consultant appointments, so that they can ask the questions that need to be asked.

So, I have got a dual St Jude PM and it paces through the atria, when the atria is in NSR, but not when it goes into AF. I was told in the private consultation that I may need a third wire implanted, which I guess is what you are referring to. Also, since the PM has been pacing, my EFraction has dropped from 51% to 41% and my blood pressure also is lower.

I feel like I am being labelled as the 'awkward' patient when I ring the Arrhythmia team, but I have had to do it. I wish they would say 'see how this works' and make another appointment for a couple of weeks, but they just leave you high and dry again.

I will ring the Arrhythmia team again and ask for a consultant's appointment as soon as possible. There is no doubt that I have been badly affected mentally by this situation, and this has been completely ignored by the medical staff. Thanks for your good advice.

CDreamer profile image
CDreamer in reply toMelleray

I do agree - the lack of frank and open information raises anxiety and may sometimes raise expectations - which are then not met. I think an informed advocate is an excellent slider - I know I go with my husband and it’s only when we are home he asks me what it all means! I try to explain to the best of my ability but I’m not trained or competent to advise so I just say that in that position I would do or ask .......

Thomas45 profile image
Thomas45

I suppose normally to have positive thoughts about my permanent AF and other ailments: chronic asthma, chronic urticaria, enlarged prostate, and lymphoedema in my lower legs. On hot days I wear shorts, showing my knee length compression socks.

Yes I m not as active as I should be, I should be walking more and driving less.

The last time I had what it's was planning and undertaking s short visit from West Yorkshire to northern France to pay homage to my uncle on the centenary of his death. He was killed in action 27 years before I was born but I know of the support he gave to my mother and his siblings when his alcoholic father abandoned his family in 1913.

I worked out the best way to get there was train to London, Eurostar to Lille, walk to Lille Flandres station, train to Achiet le Grand, and taxi or bus to Bapaume where I'd booked a hotel. The next day bus to Vaulx-Vraucourt, and walk to Vaulx Hill cemetery. And then the what ifs crept in.

What if my heart rate increases when the train goes under the channel, what if I get claustrophobic, what if the channel tunnel lets the sea in, etc. I watched you tube videos of Eurostar, but what if?

In the event I had a pleasant Eurostar journey. I visited my uncle's grave and then about 3 pm was faced with either wait over 3 hours for the next bus or walk 5 miles back to Bapaume. What if I collapsed on the road back?

I had a pleasant but quite slow walk back to Bapaume, acquiring blisters on both feet on the way. After an evening meal and an early night I was ready for the return journey which was pleasant and interesting.

It's a case of Que sera, sera for me. What will be, will be

In the meantime I will just get on and enjoy my retirement.

Having said that there is no way you'll get me on an aircraft. Fly? No way.

jeanjeannie50 profile image
jeanjeannie50

It's sounds as though you are doing all the right things Thomas45 , I'm pleased to hear that you managed to visit your uncles grave to pay homage on the centenary of his death. My paternal grandfather just managed to survive there, but came home with severe wounds. I still have the telegram that was sent to his wife.

If you feel like doing so, have a search on YouTube for Leonard Cohen reciting the poem In Flanders Fields. It's truly amazing! Here it is:

youtube.com/watch?v=cKoJvHc...

Yes I agree, with AF there are times when we just have to resign ourselves to 'Whatever will be, will be'.

Morzine profile image
Morzine

I get that so well..Jean Jeanie!....what iffs........have no answer I’d love one.......we merrily never gave our hearts a second thought tillthis happened.......I’ve a big “what iff “looming in mid September as I’ve booked a huge road trip to Australia .....booked it on a real positive high.....now it’s closing in I’ve had a few what iffs.......I guess my coping mechanism is to shove it somewhere in my mind not to be thought about till much closer.......you tell yourself you’re fine then a little worm wrigglesoutfrom some brain cell saying.....what iff........🤨

jeanjeannie50 profile image
jeanjeannie50 in reply toMorzine

That's it exactly!

Coco51 profile image
Coco51

"What ifs" are the bane of my life!

I can identify with much of what you all say. But each day and in AF attacks, I now try to spend 10 minutes deep breathing with the out breath longer than the in breath, and sync the breathing in time with various things I visualise, like waves breaking, a slow pendulum swinging, blowing up a balloon and watching it float away.... then afterwards I listen to beautiful recordings made for me by my therapist in some hypno/psychotherapy sessions. The best ones deal with "overthinking" and "thinking the worst".

Usually works and always makes me feel more in control.

jeanjeannie50 profile image
jeanjeannie50 in reply toCoco51

A good tip, thanks for sharing Janet.

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