How friends and family see those of us who have AF!!

My daughter, although very sympathetic and kind, has always made a joke when I tell her the latest suspicious trigger that I believe sets off my PAF. My triggers are much the same as everyone elses on here: stress, artificial sweeteners and additives, lots of sugar (as in chocolate and sweets), overeating, cheese etc.

After having a cardioversion 6 weeks ago I'd felt extremely well. Then last Sunday morning while in bed and still feeling amazingly well I thought to myself, I bet I can even sleep on my left now and I turned onto that side. Yes, no thumping heart and still felt well. I decided to get up and immediately went into AF. I rang my daughter to let her know my heart was racing again and she said," What do you think has brought it on?" When I said, "Turning onto my left side in bed", I could tell by the pause and silence that she was stunned, then she said incredulously, "What did you say". I guess she was wondering, what crazy trigger has mum come up with now. I was quick to tell her how lots of members of our forum are the same and don't sleep on their left side. However, it brought home to me how some of our triggers must sound absolutely mad to others. Think I'm going to keep quiet about them from now on and just say I don't know. Thank goodness I have this forum where others understand .

37 Replies

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  • Hello Jean and sorry to hear about that. I agree that because we usually don't LOOK ill people find it difficult to understand our condition. I personally never bother looking for triggers --as my consultant once told me "that way madness lies. " I should warn that cardioversions are not a cure for AF and whilst they may revert one to NSR in some cases there is no guarantee. I had three all told but always a month or so after one of my ablations to correct atrial tachycardia . Maybe time to consider ablation?

    Hope you feel better soon.

    Bob

  • Hi Bob - Thanks for your response. My last cardioversion in March was my fourth and I'm waiting for my EP to contact me with a view to decide where I go from here and if a third ablation for atrial flutter would help. Yes, I think wondering if something triggers a PAF attack could cause madness! I try not to obsess about it, but like to be positive and hope that there could be a simple cure. My tachycardia has eased off a bit since it's madness on Sunday, but when resting my pulse is still around 90 whereas it's usually 62, diastolic blood pressure usually around the same as my heart rate has risen the same amount.

  • I was trying to turn this round the other way and think about things that other people suffer from. For instance, my husband suffers from tinnitus, and you can only try to distract yourself from it. We've all tried to distract ourselves during an AF attack.

    We've probably all seen people park in disabled bays who are apparently fit and healthy but many of them have some unseen disability. So it's easy to be judgemental about other peoples' situations, even our nearest and dearest, and not believe or understand them if you haven't experienced it yourself.

  • So true re parking. On Sunday with my heart racing, I actually went to do my afternoon stint as a house steward at the National Trust's Coleton Fishacre property hoping it would help. We can sit if we want, so I did lots of that. It certainly took my mind off my heart. Then yesterday afternoon I was thinking of going to bed as I felt so drained. My daughter rang to ask me to dinner, which I accepted and immediately started to feel better. I'm a great believer in 'mind over matter'.

  • Re the disabled parking. I'm always having to drive my parents-in-law around (both disabled). Invariably, I have to drop them off directly outside the shop their going to or whatever, then go and park in a disabled bay so they can walk back to it and get the extra parking time. It can be really embarrassing when I park and get out when I'm so obviously not disabled, and I've had a few disapproving looks!!!

  • People can sympathise, but unless they have experienced the same health issues or problems it is impossible for them to be truly empathetic, and sometimes they can struggle to find the right words of comfort which can prove upsetting for both them and you. Nowadays, other than this forum, I rarely mention my AF to anyone except my G.P. and/or cardiologist.

  • Yes, I don't think I'll ever talk about my PAF triggers to anyone out of this forum, or someone who understands heart rhythms.. It is difficult, friends used to be very sympathetic and supportive but after 7 years their interest has waned.

  • I agree. That's why I find this forum so helpful, it saves me having to moan to my family and friends. Even when I'm having AnA.F. episode I apparently look a picture of health so not much sympathy I'm afraid.x

  • Snap - I'm always told I look a picture of health while in PAF too. When in hospital in October last year and my racing pulse eventually dropped to 130, I was sent home entirely on the basis that I looked so well. I've always tried to present myself at my best, so I'd struggled in the ward to wash my hair and shower with a heart monitor on. One of the junior lady doctors said to me as I passed her desk, I can't believe how perfectly groomed you always look and of course I had my usual make up on. You may say I'm vain, but it makes me feel so much better to look reasonable. I also never put the sad voice and face on that some people do when poorly. I've always been fairly cheerful and having PAF hasn't doesn't change that.

  • I can relate to your post because you sound just like me, I try to look my best at all times because it does make me feel better on the outside even though my heart is dancing around on the inside.

  • The only people who have been concerned with my triggers have been work. Cardiologists have never really been forthcoming with explanations as to what. I was under a lot of stress last year, and I did drink more caffeine rich soft drinks than I probably should have. I was also very active working 12 hour shifts on my feet all the time, easily hitting 7-10 miles per shift stop/start and also walking/camping on my time off. But even after the first Cardioversion, 3 more episodes still hit when I was doing nothing like I was in the run up to my first. Walking downstairs, lifting a carrier bag up, walking to work for a Sickness review meeting...... none of which were really closely related. I gave up booze and caffeine and reduced my salt intake drastically after my 3rd cardioversion, but still had another event 4 weeks later.

    My stance is - probably stress and diet.

  • A good topic, its been a learning curve for me in respect of my family, but this tended to be too misconstrued as I also had to convince the medics at the same time. In other words it was my frustration in not being understood or believed that this condition could be caused by so many things. This used to happen but now its been a while I have realized that unless they were around at the time of the episode it was easily dismissed. When we get together they comment on how well I look which is great, so I tell them of my latest discovery which seems to bring them in without the feeling that I am complaining or being a fraud. I tell my sister more on the phone, as she doesn't relate too many details to the rest of the family when I am not there. For me its mostly after food.

  • It's interesting what you have said about your family. Mine take more notice when I'm admitted to hospital. My PAF usually starts after being still for quite a while.

    My daughter could understand when I told her that I was going to try the Fodmap diet and also avoid gluten and lactose, but to tell her a few weeks later that my PAF had started again because I had turned onto my left side in bed, sounded just too silly to take in! I can understand how she must have felt that way as it does sound a silly thing to blame. Yes, thank goodness for this forum.

  • I have not had gluten and lactose since diagnosed with a hiatus hernia 2 ish years ago, does this help or hinder your symptoms, I also had a dietitian advise on the FODMAP diet but I will be honest since moving last year to a new area I've not really reviewed it much. Wonder if it does help?

  • Oh, my hubby comes up with triggers on my behalf, he keeps trying to take me off the weirdest things - the latest is caffeine-free diet coke... Which I rather like, but I have been told very sternly not to! The kids live a long way away thank goodness, I'd hate to think of them all getting together and taking me off more stuff! I'd end up on hay and water, I'm sure! Strange how different people react - hubby is still at the 'there must be a cure' stage and gets very irritated with it for not complying...

    Lis

  • How lucky you are to have such a caring husband, he sounds lovely! I'm on his side re the caffeine free, diet coke - full of nasty chemicals! Each to his own diet, that suits them, I say.

  • He is lovely actually :) I joke, but he's a gem. I don't like to break it to him that it's not going to go away... and yes, I know the caff-free diet coke is a vice lol, so I'm good with it really :D

  • It may be caffeine free but its Fizzy, and that's a no no according to my GP!!

  • Really? Nothing fizzy? Oh, now I am gloomy... Bah...

  • Just typed my first ever post and lost it - will try to find it and get back to you. Hello to you all, what a fantastic site. TTFN

  • Welcome to our forum. I've often typed a reply then somehow lost the lot, so please don't be discouraged. Look forward to hearing from you.

  • we've all done it! it is that second click "SUBMIT", that is so important after preview. Welcome!

  • Oh what an appropriate post! People have no idea what a brave lot we are---- instead of whining we usually put on a brave face- partly just because we are so tired of our own stories! And then we pretend and pretend all is good until we are alone and let go Or rollover on to that darned left side (me too) and decline into a less than favorable state. As you say we look fine, I even look better at times as I make a bigger effort to look well for my own good as well as others!

    Yes, we have triggers, yes they are real, and we are doing a helluva' good job keeping it together despite those triggers! Thank you all for this support.

  • Agree with you totally and yes I've grown tired of my own stories too. Another thing I find is that when I go shopping with friends or family, I warn them I may suddenly become extremely tired and need to go home. They certainly don't understand that and I feel guilty for spoiling their day. Now I try to go shopping on my own so that I don't have to feel that guilt. The thing is one minute I can be full of life and energy, then suddenly it's gone and I'm almost too exhausted to take another step and that's something you have to experience to understand.

  • Hubby and I have been feeling elated because I have been symptom free for a week minus a few hours. Until an hour ago. Ah well, here we go again.

    I understand where Jeanjeannie is coming from as I have been not going or lunch with the ladies, not going for organised walks etc, etc. as I don't want to be a burden and spoil the enjoyment of others. Luckily I have a good caring husband who has been a rock.

  • Glad to see you've managed a response - keep it up and you will learn so much from this site. They are a fantastic bunch of people and the only ones who really know how you feel physically and emotionally. I've still managed to go out for lunch, but not the lovely walks I used to do. Perhaps next week, as from this morning my heart has been back in normal rhythm!!! Hope yours is o.k. now.

  • Also a star, maybe a rockstar?! You are very lucky. I think I may have to overcome parental training and natural stoicism and complain more......the day after I came back from hospital having had PAF, Atrial tachycardia, angina, suspected heart attack, angiogram, plus after effects of drugs I had been given as well, my husband said 'Glad you're fixed' and expected me to take up where I left off and catch up on housework not done while I was away. I can laugh now, but we'll have to have a little talk......

  • Thanks for your kind comments Jeanjeannie and Iris. Am still in AF, prior to my ablation I was usually 18 hours at most, but since, (the story of which I told in my post earlier today) I have gone into a 3rd day at times. Added to that, the weather has been blimmin awful today, rainy and misty.

  • I have been following this site for quite some time but this is first time posting. I have had AFib for 4 years now and 4 cardioinversions. I am in a fib daily with no relief. I am now sitting in a hospital bed where I have been for days now while they change my medicine to Solotol. I also had another cardio version which put me into NSF for about 5 hours. They have just mentioned cryo ablation to me but I am so nervous and scared about it. I read so much on here how unsuccessful the first attempts were and I realize everyone is different and have different takes on it. I do not feel my heart racing at all which is a blessing to me as it is constant with only a very short time of being in nsr usually after cardioversion.

  • Hi and welcome - Sorry to hear that you are in hospital. AF is a tough old business to get your head around. I've had 5 cardioversions and two ablations. Like you I was hesitant regarding my first ablation, but my attacks of PAF were totally draining and I'd usually need several days off work to recuperate. As you will no doubt be aware there are so many types of AF that I wouldn't be able to comment on whether an ablation might be a good idea for you without knowing a lot more about your symptoms. Are you in constant AF or or do you have periods where your heart races. Do they make you feel ill or tired. I would suggest that you copy the question you have just asked me into a Post of its own (at top of page) so that everyone on this site can give you feedback too. Also say a little more about your condition including answers to my questions. I'm sure some members on this site will have had cryo ablation, mine was radio frequency. You will get so many more answers if you re- post this. If you don't want to repost it, that's fine and I will support you all I can.

    Jean

  • Hi and welcome - Sorry to hear that you are in hospital. AF is a tough old business to get your head around. I've had 5 cardioversions and two ablations. Like you I was hesitant regarding my first ablation, but my attacks of PAF were totally draining and I'd usually need several days off work to recuperate. As you will no doubt be aware there are so many types of AF that I wouldn't be able to comment on whether an ablation might be a good idea for you without knowing a lot more about your symptoms. Are you in constant AF or or do you have periods where your heart races. Do they make you feel ill or tired. I would suggest that you copy the question you have just asked me into a Post of its own (at top of page) so that everyone on this site can give you feedback too. Also say a little more about your condition including answers to my questions. I'm sure some members on this site will have had cryo ablation, mine was radio frequency. You will get so many more answers if you re- post this. If you don't want to repost it, that's fine and I will support you all I can.

    Jean

  • Jeanjeannie is right! Repost your remarks in your own post

    healthunlocked.com/afassoci... and you will get more information and certainly more personal support - it is worth gold! Do not let the possible need for a second ablation stop you from the first one! I am going for the second one with NO hesitation in order to relieve some of this chaos in my heart!

  • I agree. The worse I feel the more I dress up. Hair, make up and accessories. I try to follow the Law of Attraction in my everyday life and be positive but it can be hard at times.

  • Me too ..........although Im starting to care less and less now.......Interesting about the cheese and the sugar...I scoffed cheese a couple of nights ago and had a really awful night heart wise...

  • I never eat lots of cheese now, much as I love it. I've been eating really healthy for the last few months and not had any episodes of PAF (which is unusual) other than a few ectopics. I find now that if I eat anything sugary I become very aware of my heart doing strong beats. I must say it makes me not want to eat anything sweet. You would think that perhaps by doing this I would lose weight, but no such luck! Guess it's because I'm buying what I think of as 'healthy' mixed nuts and scoffing them instead.

  • But at least its healthy fats in nuts...:-)

  • Yes, now you're coming round to my way of thinking. Full of vitamins too!

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