Pad for 10 years very few noticeable incidents but always been anxious about heart rate and rythmn went persistent afib in June cardio version in October lasted for about a week back in persistent afib cannot cope with constant squeezing pulling flipping and general irregularities of heart rate is relatively stable 50-60 sleep 65-90 day with increase when walking etc seems to be made worse by eating sat down then get up and goes berserk not fast but fluctuating and fluttering wildly also if wake up in night when get back in bed it comes on particularly if I lay on right side and when I wake up it’s particularly bad until I get up and move around during day when walking feels like heart is swinging about on list for ablation but I will have to arrange a loan for private as cannot and will not cope with these horrendous feelings daily
panic over heart feelings : Pad for 1... - Atrial Fibrillati...
panic over heart feelings
Not a lot I can offer, other than to say that it does feel horrible and it IS worrying. Of course it is! It’s your heart! We only get one and we’d rather it was working like a dream, but alas not. If you have an arrhythmia nurse it might be an idea to ring and ask if there’s anything that you can do/take to get you through this waiting period though I know that there’s not a lot more that many of us can do as we’re trying our best already.
Appreciate your reply it is incredibly exhausting thinking you are about to die several times a day I don’t fear death but I do fear living life like this
Know there are treatments but getting to them is difficult. If you could give us an idea of how AF was diagnosed, if you have seen a cardiologist or Electrophysiologist (EP) and what medications you are currently taking (seems obvious if you are on meds they are not effective) and what tests you have had such as:- echocardiogram, bloods draws, ECG etc. Has anyone ever told you to put up with it? IF so then they are wrong, it’s a matter of getting to a professional who can help and that isn’t always easy or straightforward unless your GP has some knowledge of heart arrhythmias?
PS - you can just ring them and self refer. I have personal experience of both Dr Lovell and Dr Podd - excellent.
Cardiac nurses basically told me off saying ep already fully aware due to FibriCheck reports and 14 day monitor don’t know what else I can do or say to emphasise my inability to accept symptoms are normal and not life threatening very difficult when heart bucks flips misses beats and I am aware of every one all day and during night when awake it may just be me but I really cannot live like this anymore
Anxiety around arrhythmias is common and many people struggle to come to terms with the sensations and worry but it’s not acceptable to just dismiss your concerns without referring you to some support. What the EP says is correct but doesn’t mean AF isn’t treatable, nor that your quality of Life is so poor because of your anxiety, just means that particular department probably will not be supportive or helpful.
Unfortunately NHS is notoriously poor at supporting and treating AF, dependant upon where you live? And even worse at supporting and treating health anxiety - but that is also treatable so go back to your GP and keep on keeping on saying you need help.
I’ve lived with AF and those sensations for nearly 20 years now but I don’t worry about them but I also know many, many people who find the sensations intolerable.
What medication are you on? I would see if there is anything else they can give you to calm the heart down while you wait. Perhaps go and see your GP or Cardio. and voice how this is affecting you, You need some help. My AF is progressing so l know how ill it can make you feel. I have the problem from sitting to standing and when l wake up. I am waiting to see EP with view to ablation. I have had echo, waiting for holter monitor. Like yourself l may have to go private initially if l don’t hear soon.
On 7.5mg bisoprolol hr reasonable at rest 80ish lower 60ish sleep seems to be worse symptoms when less active and probably more time to stew on it’s so difficult not knowing where physical symptoms end and mental illness takes over one minute you think you’re going mad and then you think it’s just normal thoughts of anxiety due to symptoms
Yes, this awful condition has a lot to answer for when it comes to mental health. I believe some have to have anxiety management to cope. We are never really free, it’s always lurking in the background. Life changing, but not life threatening, thank goodness. Just tell yourself that this will pass and things can only get better. There are rhythm control drugs you could try while you are waiting which may help, so you need to see a medic. Bisoprolol is a rate control drug. Don’t suffer in silence or be fobbed off. All the best and let us know how it goes.
Hi So sorry you are feeling so unwell. This last month I’ve been experiencing more episodes. They’ve upped my Bisopolol but I think I need to take another one I’ve managed to see a Dr but was in sinus when he examined me. I like you get so anxious, I feel no one around me know how awful it makes you feel. I’ve fried phoning AF nurse for 8 days and no answer. It’s so frustrating everything is so long winded. I’ve thought of paying to see a private Gp just to see if they show anymore interest. I know I’ve haven’t been much help but it’s reassuring to know there’s someone out there experiencing the same Take care and hope you get yourself sorted .
Paying for a private GP won’t help but organising a private appointment with an EP may - if as I expect you live Exmouth Devon - try Exeter Heart - several excellent EPs there and they work out of the Nuffield and RD&E. I used to know the Arrythmia nurses but they really don’t seem to have the time to answer their phone as under so much pressure but they used to have a weekly clinic so may be worth trying to get an appointment with them? They tend to triage and fast track anyone in need. Bisoprolol is a rate control drug and rarely stops AF.
Hope you get somewhere soon.
Verapimil helped settle my heart until I had an ablation for flutter.Go and have a chat to your GP .Good wishes.
I know that feeling! I was incredibly anxious before I had may ablation and I think it made everything feel much worse. Try to be calm and ignore the flips and bangs your heart is doing if you can. I tried to keep very busy (and still do to combat panic). One of the best things I did was try mindfulness. And of course as Ethel103 says go and tell your GP or better, your cardiologist. Best wishes x
Goodmorning. Iam really sorry to hear about what you are going through. My advice would be to go private, i know it can be expensive but it would help you mentally. I know from experience what Anxiety can do to the body and to the heart. I been experiencing a strange feeling in side my chest since going out into the snow this morning, my family doest understand how the cold weather and windy conditions effects someone who has heart issues. They think iam being silly if I tell them iam not feeling OK, I don't like feeling like this. Go private to see a cardiology consultant that I would do. Take good care of yourself
Thanks if I am advised ablation is some time off I will pay to go private unless medication to help relieve these symptoms can be found I am sure it is not realised how damaging this condition can be unless experienced in the same circumstances as we do
You are so right, until someone experience the kind of experiences as we do, they won't fully understand. I would not wish this on anybody, it's horrible
A private consultation will cost £2-300, maybe up to £1k if tests such as ultrasound and ECG are also done privately; and maybe up to £2.5k if a cardiac MRI is carried out. A private ablation will cost c£20k. I was told that the general success rate for ablations that treat what we both have, that is a combination of AF and other right atrial ectopic arrhythmias, is about 70%; this increases to 90% with a second "touch up" ablation, but not always - but that would be a further £20k.
I have similar symptoms to you, and I'm on a waiting list for an NHS ablation at Leicester. My anxieties have been high, and I do suffer with health anxiety in general. My heart-related anxiety has lessened a great deal since a recent cardiac MRI recently showed that my heart had not deteriorated or changed since the last one, 5 years ago, and was, aside from mis-conduction, healthy.
Do you think that your nerves would calm, and you would be able to cope with the arrhythmias if you knew that your heart was sound and that the problems you suffer are, essentially (despite the discomfort and fear they cause) of no immediate or long-term consequence to your health? Might a cardiac MRI be sufficient to calm your nerves, rather than pay for a very expensive private ablation with the thought that a second is a possibility?
You see, not to be negative but to be realistic about the possibilities, you could spend over £20k, even double, and still have arrhythmias. There can be no guarantee. So, it is the anxieties you have that are the real problem, and they cannot easily be dealt with - unless the assurance that an MRI could give might become the key to reducing them, as it has for me.
Steve
Thanks Steve what you say makes absolute sense unfortunately all that goes out of the window when heart and stomach kicks and bucks and takes breath away and causes lightheaded feelings which causes walking swaying and feeling as though going to faint or fall I agree anxiety plays massive part but will treating anxiety stop palpitations etc or will stopping erratic heart beats rythmn and rate stop anxiety
The anxiety could well be causing at least the less bearable aspects of this. That sounds crazy but I have "been there" and, looking back, have become (somewhat) convinced that anxiety drove the tachycardia and, from there - well, lots of truly awful symptoms.
But... who knows? I have read that some AF sufferers do have a greater reduction in EF during arrhythmia attacks and some of those cannot cope well with that reduction, having perhaps, similar symptoms to what you describe.
Steve
Some truth in that. My consultant said adrenaline provokes AF, as well as viruses. I try to bear that in mind when I have an episode of AF, and I try not to get agitated by it because it could make it worse than it need be. How people live with permanent AF, I just don’t know.
I cope much better these days, really, (he says tempting fate), since the heart scan gave me back my confidence. I have had a couple of fast episodes which brought me worryingly near to a hospital visit, though.
In fact, AF ran all through last night, albeit at a reasonably low rate, yet I did manage to sleep (not that I ever do that very well!).
Steve
It can be reassuring to have a good test result. Unfortunately I have a valve problem with LA enlargement. Common enough and not considered that much of a problem by the consultants, but it’s very likely the “root cause” of my AF. BTW, tried the Wellue but terribly allergic to the adhesive parts of the chest strap. Not sure what to do with it now. 🤷🏻♀️
Oh dear. I can’t get on with the chest strap so use the sticky patches. These work well. I find my Wellue can show a lot of “noise” which I put down to movement but feel the “press stud” type link to the sticky pads might not be tight enough.
Steve
I find those stickers didn’t stick particularly well. They seem quite expensive to buy. I had a 72h ECG last year and I had a lot of redness and itching where the pads were stuck on, and were still raised and itchy a week later. I don’t get on with sticky stuff, plasters etc. It’s a shame about the chest strap because skin reaction aside, it produced quite a good trace, but not so good during active times. As you say, it picks up a lot of movement and produces a very noisy trace.
I meant to ask, is that "valvular AF"? How symptomatic is it? I think it's near universal when we get older but you are still a spring chicken!
Steve
I’ve never been told it’s “valvular AF” but it could be. My GP has ordered another echocardiogram but has advised me to bring it up with my consultant in a few weeks to get it done sooner, so I’ll find out if it’s progressing.
I felt like that during my worst episode of fast AF. It really was difficult to stand etc. I kept trying to tell the paramedics “I’m not normally like this” because I was aware I was in some bizarre physiological and psychological state and wasn’t able to think straight or stand up straight with it. With such a rapid heart beat the brain isn’t going to function properly, so I don’t believe it’s necessarily “anxiety” in the usual sense of the word, but the brain is certainly receiving panic alarms just from the fast HR and very probably other physiological factors. But the fact that your heart is going haywire is very, very unsettling. I certainly yearn for the days of not having to even think about all this.
Try to get a private appointment with a cardiologist if you can. And make sure you take the results of your tests with you. Explain you can’t be paying for them all to be done again. I think they are the only ones who can prescribe the rhythm control drugs. One of those might settle your heart rhythm a little. It’s the flipping in and out which is horrid. People in permanent AF don’t usually feel like that. But I obviously can’t speak for everyone. Once your rate is controlled and it’s not too fast a lot of people tolerate PAF. But absolutely horrid when your heart is in and out and trying to do its own thing. I really feel for you. But I’m pretty sure it could be calmed down with some form of extra drug. But I couldn’t say what that would be. I hope you get somebody to listen to you.
Flecainide works fine at keeping my heart in order. Perhaps you could take that instead of having the op. I have never come across the specialist nurses people mention and only got the Flecainide after seeing a private EP after the lowest dose of Bisoprolol proved too much for me to take daily! We are all very different and I hope you get the treatment that works for you.
medically I can’t tell you anything, but I can tell you that anxiety can be one of your worst enemies. One of the first things my EP had me do was stop checking my numbers. He does not believe in people with the latest gadgets because you will make yourself crazy as you can see. You need to get out of your head and not let a fib rule your life and ruin it. I had tachycardia of around a 200 sometimes higher for six months without a break. I could not walk I could not stand up without tears the chest pain and heaviness was so severe. I didn’t have to think about it. The pain was real. Not saying that yours is not, but you need to get used to the fact that with a fib, it changes your life. I have a fib and flutter and heart failure. Long story short I ended up with a pacemaker best thing I ever had done be aware ablations are Band-Aids. Everything is a Band-Aid because there is no cure yet because a fib hits us all differently. There is no . I was blessed with a doctor finally who in quality of life and said the hospital a lot of chance of getting the right spot is minimal. I also had so much scar tissue from three ablations. He would not consider another one except for the AV node. FYI, my heart failure has reversed from 40 ejection rate to 72 now which is good. Even people without a fib would be happy with it. I had been on anxiety meds to be taken as needed. My EP actually spoke with my other doctor because he felt I needed them more than I thought and he was right.
even with a pacemaker, you can feel flutter or a fib at times the once the AV node is ablated, your pacemaker is in charge. it still feels I get annoyed sometimes worse. I trigger it by doing something stupid I shouldn’t have done like over eating or eating or drinking something too cold. Those are some of my triggers. There are other times. We just can’t help getting anxious and it will happen. I am only mentioning my pacemaker if and down the road one gets mentioned to you they are not. scary. My quality of life improved before I even left the hospital. I did not even realize it until I was able to get up out of the wheelchair and into the car by myself I was able to walk and not cry in pain. It’s awkward when you have it done lol I say because I am Italian. I talk with my hands and you keep your left. I will tell you my back pain can be much worse than anything I felt having my heart worked on. It’s all about your doctor and your faith in them. fighting having a fib is not going to accomplish have to accept that you have it and follow the rules of your doctors. They put time into learning what they do. My EP is not only a doctor and and teacher at one of the best medical schools you can find, but he be an IT person because of the equipment used. He has more letters at the end of his name than the alphabet has. Do what they tell you yes a fib, etc. is horrible but few people die from it. follow your instructions and just know as I said, even heart failure can be reversed if it is caught soon enough. I was blessed that my doctor said neither my or I could take anymore. That’s why we went pacemaker. Oh FYI all four chambers of my heart are a mess. He actually created a pacemaker for because there is I have one of a kind I am called unique. I have a tech assigned to and she is at all my check ups. We had a situation with my battery or so we thought and actually had an on the line involved. They can even take a reading without me knowing although they do tell me most of the time, but I am also4 seven and have an app on my phone. Every day they are coming up with new things please try to settle yourself down. Trust anxiety is worse than a fib.
Newly diagnosed persistent AFib
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