Anyone out there?

Had an ablation in Southampton Hospital in 2004. Bad memories. Machine broke down during procedure. Said never again. But when replacement machine was found and brought in procedure was continued. Was free of PAF for ten years. Sadly PAF came back last year worse than original problem. Waking me at night, chaotic forceful beats; breathless and feel sick and giddy. . . Scary - Into A & E - via 999 calls. Seeing Consultant next week. Feeling desperate and hoping for another ablation. Hoping things have improved since 2004. Husband thinks I'm exagerating my symptoms - says I've cried wolf too many times and refuses to call the paramedics next episode. Says I always get over it eventually. Annoyed I've waken him up. Lonely times. Anyone tried to 'just lay back down and go to sleep' during an episode? Hard.

32 Replies

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  • Hi there, Mar1lyn. Yes, we're here, full of sympathy because it must be disappointing to go so long and then find your heart going astray again.

    Yes, ablations have improved in all sorts of ways, with various new techniques and a whole lot of extra skill, expertise and experience.

    I find it hard to ignore AF and go back to sleep. I tend not to wake my other half as he can be all too supportive (are we ever satisfied) but I do have a portable ECG gadget which I find really good and I recommend one as it would give you something to show your husband, or indeed your consultant or GP. It means you can avoid a trip to A and E - unless you really are worried - and still have evidence of your heart's misbehaviour. You can get an Alivecor or an Omron. Not cheap, but a great thing to have to hand.

    Hope your consultant will give you some joy and this forum is a great source of support.

  • Thank you - I appreciate your comments. M

  • I'm hoping Iris will put some of her meditations up here when she sees this- I think they would help. Sorry to hear you are poorly- I'm sure ablation techniques are improving all the time

    You may was to look at the presentations we have on the surreyasg u tube by Dr Bogle- he talked to us about some studies which showed great reduction in AF from life style changes- these may help

    best wishes,

  • Thank you - I'll check out Dr Bogle on line. Always open to new ideas. M

  • Oh Maralyn - Yes, we're all here for you and understand exactly how you feel when your heart takes off. I can't sleep when mine's like that either, couldn't possibly!!

    Next time your heart misbehaves at night why don't you call the medical help line for advice, think it's now 111, or you could ring the out of hours duty GP. If you are feeling bad I'm more than sure they will call an ambulance for you if needed.

    I'm so sorry that your husband doesn't understand how scary this condition is and I'm sure you have never ever cried wolf. What a thing to say!!! I am really shocked by that attitude.

    If you ever want someone to talk to, who understands what AF is like, I am more than happy to let you have my telephone number.

    A big caring hug from me.

    Jean x

  • Thank you for your reply. I have actually rung 111 several times at night for advice only. After a few questions they call the paramedics out, who are lovely, but the outcome is always the same - into A & E. Last time I said I would rather not go in, but they persuaded me because of my BP and ECG readout. And I did feel awful, sick and dizzy. I later asked the Cardiac Consultant whether I should come in next time, and he said he would be happier if I did. He told my husband this as well. By the way, my husband is a miserable b sometimes, but can also be incredibly kind and generous. I think he goes into denial that I can be ill, so pretends to himself I'm just being silly. When I'm well its ok, but not much fun when I need support.

    So, thank you for your support - You sound a really kind and caring person and I appreciate it. M

  • One of the problems with AF is that one does not usually LOOK ill during events. Ladies also do themselves no favours by putting on make-up and "looking their best" when seeing doctors etc. There was some national press comment on this a couple of years ago. My advice is to make sure you look like you feel and don't try to be a heroine. He will come round soon enough when his dinner isn't on the table.

    WE all know how you feel and good luck with chasing another ablation. I had my first in 2006 and my third in 2008 and things have improved both in outcome and technology.

    Bob

  • Thank you. I wish I looked good during an attack of PAF, but I look terrible, grey faced and about a hundred years old. Why do we always have the oldest saggiest pyjamas on etc when we get taken into hospital? No makeup, no hairbrush, no anything. I did have a ready packed bag for such ocasions but it was forgotten. Good to know some have had three goes at ablation - with good outcome. Encouraging, thanks Bob.

  • You ask if anyone tries sleeping through an episode. Well that is exactly what I try to do.

    My EP thought that I was fibrillating more than I realised and monitors have shown that this is correct. I have often woken up with AF. If an attack starts during the day then the best course of action is to go to bed and try to sleep it off. I have tried to work or to exert myself to shake off an attack but this is not so successful.

    Your husband's attitude is most unhelpful. Ignore him!

  • Thanks for the reply. Good advice. M

  • I've had the same, ten years after ablation back to square one but worse. I've been put on some drugs though which are working great. I had a few terrible nights, one when I thoughtI was about to meet my maker. GP gave me some anti anxiety pills to take if it was bad and they worked but could only take occasionally as they are addictive.

    Can I also suggest a divorce?

    Koll

  • I definitely agree with the divorce, crying wolf is an awful nothing to say, better off without that type of support.

  • Thanks Koll - terrible nights are just terrible aren't they. Literally. The next day's not much fun either. I think you know where I'm coming from. You made me laugh out loud about the divorce. More than one way to skin a cat as they say. It will have to be another designer bag on the joint account. That really seems to hurt. You have to keep a sense of humour don't you. Or you're finished. I don't even like designer bags!

    Best wishes M

  • I'm a bit puzzled by the 'crying wolf' comment does he mean because you didn't die? Or get kept in hospital?

    Last time I had a bad episode I was in hospital for three days and when I got home feeling very fragile my husband said I'm so glad you're fixed and expected me to pick up where I left off. I suspect he does not know the difference between a person and a car....

  • Buffafly - thanks for your reply. He really did say that. I asked him the same question but he just sniffed and shook his head. Please see my reply to Koll.

    You had a bad do didn't you! Three days in hospital. Poor you, and coming home you had to hit the ground running. Men! (Sorry forum men - not you of course.) you have all cheered me up. M

  • Yes. I often did, but I have a very sympathetic and supportive husband which I think makes a huge difference, he was always the one wanting to call for help! i used to plug in my earplugs and usually dozed, couldn't say it was sleep as I was always conscious of the irregularity of heartbeat and thumping.

    My GP and I constructed a criteria for when to call 999 - when my HB went over 180-200, when my BP dropped below 70/40, if my pulse dropped below 40 after being high, if there was any chest pain, if the AF continued for more than 24 hours and didn't respond to the Flecainide and Bisopropolol.

    It is scary and no shame in getting things checked out.

  • How sad your husband is obviously not a sufferer otherwise I think he would have a greater understanding. No it isnt possible just to ignore it and its scary. I am a strong person but when your heart is going bonkers its a different story. Try meds I am on flecainide and bisoproplol which seem to have solved it. The consultant talked about ablation but I see that as a last result in fact the meds I am now on are known as a chemical cardioversion. Look for a local heart group support it will make a difference not sure what area you live in but there are some all over the country go to the British heart foundation they have a help line to discuss any worries. This is a great website too. Best wishes and kniw that we all here know how it feels. C

  • Hi...i have very similar symptoms to you in that my AF is worse in the evenings and overnight and i will also wake up with the thumping heart and feel very very dizzy and have vomited once before with it ( as i did not sit down). I was at my EP yest and he said all my symptoms are classic of vagally mediated AF..and vagal AF is worse at rest!!! i think your husband's attitude is common for people who do not understand arrythmias because as Bob said, we look fine on the outside. My boss has made unacceptable comments to me about how well i look but not in a kind way..in a way that she doubts i really needed to be off work and as if i am exaggerating. What about your husband looks at this forum to educate himself and understand what you are going through a bit better? i have learned to go to sleep when in AF as long as i am not too fast. some people on here have given me wonderful tips and pieces of advice to relax..read..cup of tea in bed (decaf)..headphone...music...meditation...tamagazines...take your pic..i now try and see AF episodes at night in a positive way and think of it as 'me' time to read my book and have lovely hot drink in bed and browse shopping sites on my phone!! but i appreciate it is scary and that is after and year and a half of sitting in fear during episodes. Also hard to relax when dizzy..but my dizziness comes in waves and only lasts short bursts so i just try and wait for them to pass until i can carry on shopping in bed!!! Best of wishes for wellness for you:)

  • I'm so sorry you're going through this, sending big hugs... I think the criteria CDreamer was given are very useful, it's good to have guidelines - my heart rate usually goes up to 170 which seems frighteningly high when it happens, but the doctor said if I had pain in my arm or chest pain that was the time to go in. My hubby doesn't understand AF either, it took me a lot of arguing to get him to take me to hospital when I had my first episode. He was very upset however when he realised it was a real thing and not just me 'being silly' as he'd styled it. These conditions that are impossible to see are so difficult - I think if we could just arrange to have a leg or arm hanging off at the same time everyone would understand! Try not to let it get you down, if necessary you can call an ambulance without him missing his beauty sleep...

    Lis

  • Excellent ideas as usual here.... having a guideline makes one feel more secure. Set up your own with your doctors - and make sure they satisfy your needs - not theirs!

    Meditation has worked wonders for me.... one of my holter monitors picked up that I was at 220bpm with rabid Afib and I meditated myself to sleep. It doesn't last long as when we go out of the next sleep cycle it does wake me again - but it certainly changes my approach to AF.

    Many have mentioned great sites... Mamacass likes Headspace

    I use the work of Tara Brach who has been a real life saver for me. Her talks provide one with the compassion you are not receiving - and so dearly deserve. Her talks and meditations are free.

    tarabrach.com/audioarchives...

    MOST important - no one is "GOOD" at meditation... I assumed I just wasn't made for that much stillness until I stopped judging how I meditated. It is a wonderful exercise which applies to all we do. We tend to judge ourselves harder than anyone else. I have come to believe that is a trigger for me!

    TAke good care, get the support you need and deserve, Afib is hell and it is made easier with support. So keep posting as long as you wish.

  • hi,

    yes, i know the feeling of.."I'll just lay here quietly and it will all go away" very well.

    I live on my own and have spent many a scary night with the bang clatter of my heartbeat, totally out of sync praying for the morning to come. Somehow it always seems wors in the middle of the night! I've had to call nhs 24 though on a few occasions when it just wouldn't settle again. Only when you know that feeling and the fear that comes with it do we really understand. Stay well,

    Blue :-)

  • me again!

    Just to say that yesterday I was at hospital and am once again all connected to a heart monitor.....for the 4th time! I'm actually quite worried that my cardiologist is going to suggest this ablation thingy and to say i'm terrified is an understatement!! Feeling a tad eh, 'blue' at the moment!! :-(

    Blue

  • Hi Nickonblue

    Try not to worry about the ablation. I've still got LOADS to learn about it but as soon as I've got a date nothing will stop me. When AF strikes it's the paddles. Had enough of that one. If you're concerned, chat to Bob.

    I'm sure you'll have nothing to worry about. Good luck,

    Nigel

  • hey Nigel,

    Thanks for commenting. Am I a scardy cat or what eh?

    It was suggested about 3 years ago to do the paddles thingy but nothing more was said and I have to say that I know someone in Surrey who has had this proceedure done 3 times now and it only seems to improve for a short time. Oh, it's just all so very confusing for a girl with a vivid imagination! (I'm a photographer & Graphic Designer trying hard to run my own wee vbiz up here in sunny Fife)

    stay well,

    Blue :-)

  • Ablation is not nearly as scary as having an episode of AF, you get through those. After ablation - no more AF - hopefully.

    I wanted to say 'simples' but I didn't want to be dismissive of your worry, which is natural if you are not familiar with the procedure, the unknown is always scary! I found it much less stressful than a visit to the dentist (my real nemesis). And I have been AF free since second ablation.

    Hope you are feeling better and back home.

  • Lordy!!!

    I am terrified of the dentist and always have been...I almost need sedated to get me in the door!

    This ablation has just been mentioned a couple of times by my cardiologist but my worry is that so far, and as I said yesterday I am once again monitored up with those damned itchy sticky patches, there is nothing specific showing up other than I am in and out of AF all the time. I am aware when I'm in AF episodes and the worst ones are definately the ones that wake me in the middle of the night. I so want to just ignore it all but my fear of a stroke is so great and with bp reading constantly going off the richter scale....it's difficult not to worry. Thanks for your comments. I am at home and I live alone so perhaps I just should stop worrying eh? :-)

    Stay well,

    Blue

  • It is definately worse when on your own. It is very hard, if not impossible, to ignore it however I found that one can come to accept it and not do you any harm if you take reasonable measures to protect yourself by taking anti coagulants.

    Distraction usually worked for me, hence the earphones and a good audible book. I just found the sound of a human voice telling a story very soothing, maybe a childhood thing?!

    It is also important to challenge the worry thoughts, CBT is very good at doing this.

    The worse thing is to lie there worrying so if you can find something else to focus on, the Duckpopper meditation that has been mentioned by Iris is very good, just do anything but focus on the arrythmia. It really does help.

    That said your husband also needs to wake up, perhaps literally, to offer support and have a chat with your Doctor and know when he needs to step in and help, promptly!

    My very best wishes in these difficult times CD. Please keep posting, we here all know just how hard this is so support is here!

  • Are you going back to Southampton? I saw Dr Paul Roberts (EP) there last Feb and Oct and he was wonderful. Talked things through with him in great detail, and he willingly answered all my questions. Did decide against an ablation for now for various reasons but can phone his secretary and ask to see him again without going through my GP if I change my mind. Having read others not so good experiences I was more than pleased with mine.

    Good luck.

  • Hi Mar1lyn, can't believe your husband is such an ar***ole! AF can be terrifying even if it does settle down later! I've had PAF for a number of years and have NEVER got used to it when it first kicks off after a period of NSR. Just call 111, they have been very helpful and supportive for me.

  • I have been having hypnotherapy to help with the terror of waiting for ablation. I know that when the day arrives I will be o.k. and just glad to get it over with but I was worried that I would make myself I'll worrying about it during the lead up period.

    As far as I can tell, my sessions are a mixture of C.B.T. and guided meditation with subliminal suggestions.

    I can only say that with 3 days to go, I am still very calm and I have been able to take and enjoy one day at a time. She has made me 3 c.d.s to use at home and they are really helpful. Last night I fell asleep with the C.D. on a replay program. I woke up at about 3 am with it still playing through the headphones so I should be very relaxed today.

    Seriously though I can recommend either hypnotherapy or meditation. Good luck.

    By the way, I am quite a cynical person and wasn't really expecting it to work.

  • This worry thing is a boogger isn't it. I remember lying in my hotel room many times when working away or abroad wondering if I would be found by the chambermaid when I didn't check out (of the hotel that is LOL.) You get used to it in the end.

    Bob

  • I completely understand how you all feel, I get Eptopics, my heart thuds like crazy, I go giddy feel as though I'm going to throw up, its really awful ( it does NOT help that I suffer from a fear of emetophobia !!!!!!! ) I had 2 abblations done in the past which failed and have been advised by my cardiologist I need a 3 rd, just waiting for the date (should be in next 2 mths)

    Can I ask has any one had a gastric problem after heat ablation, I did last time and it went on for 6 mths

    Wishing all my NEW found friends WELL !!!!!!!!,

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