Following on from my last post where I spoke to my gps about ACs and was refused, it now does seem as though my AF is no longer paroxysmal and I will have it ongoing - unless it is known to revert after 6 days.? This is my 6th day. I have been trying to behave as normal but things aren’t normal, I feel very different and would appreciate your ‘take’ on my experiences please - I’m 55.
1) I’m very breathless when I try to walk anywhere and I sweat profusely. I couldnt do the Sainsbury’s shop anymore. A week ago I could do a full Zumba class easily - now i couldnt do 60 seconds.
2) my heart is running at about 130 bpm (GP said that’s ok) ( it was 45-55 in sinus)but presumably it increases when I try to walk. It then doesn’t seem to decrease at all quickly and will thump away heavily for a good 20 mins. My heart rate also increases when I eat and feels quite uncomfortably fast for at least an hour.
3) I’m struggling to sleep because of the prominence of the beats.
Thank you for your help…
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Have you been referred to a cardiologist or AF nurse for a cardioversion (where they shock the heart back into rhythm)? No wonder you feel so dreadful if your heart is stuck at a rate of 130. I've been there and it's hell. I could just manage it round Sainsburys though using the trolley like a walking frame. If your rate is constantly 130 resting I would take yourself off to A&E. I was stuck like that for about 2 months while a cardioversion was sorted. In A&E you may be offered one right away. Though thinking of that you're not on a anticoagulant are you? Please go to A&E, if not tonight in the morning if you're still at that high rate.
Meanwhile try some slow deep breathing, also bearing down (like you're going to the toilet? While breathing out for as long as you can.
Will see what else I can find in a hope to revert your heart rate.
Hello again Jean. I was discharged from a and e in January at 130 bpm and told to go live my life in rate control and that 130 was fine. They said I would acclimatise. They won’t cardiovert me anymore - I just have to live with it apparently. In Jan I converted myself after 3 days and have not had another episode until 6 days ago. I also spoke to the GP about the rate when I spoke about the ACs - they said it was fine too. I have been on the list for an ablation for 18 months now - but I’m too heavy - when it is my turn they are likely to refuse me. I have lipodema which makes me very heavy. Can you even have an ablation if you are not paroxysmal?
I agree with Jean. Unless we're missing something, 130bmp is not a very controlled rate. Do they have more than one A&E you can go to? If so, maybe try the one that didn't send you home.
In the US, if you presented as such to the A&E, they would either do a TEE and electro cardiovert you right away, start you on ACs and cardiovert in a couple of weeks, or at least get your rate under control (with anti-coagulation) before sending you home.
And back to the ACs. Whether or not you need them daily long term given your CHADS score is one thing. But now that you're in afib you should be on them and at least for a few weeks after it stops. That's normal protocol at least in the US.
The bigger picture is you need a plan. Even though you've been in afib 6 days, your options, including ablation, are still open but the clock is slowly ticking. But first you have to at least get that rate under control so you can go about your life. Unless, again, there's something we are missing.
I don’t really understand either James. I have had 22 episodes of AF over the last 16 year, most of which have been in the last 7 years. I have had 3 electrocardioversions and they won’t do more because my heart is in good shape otherwise. My AF has always settled at about 130. In A and E it was agreed that I should no longer be treated because it wasn’t necessary and AF was coming closer and closer apart anyway, so rate control was advised. My EP said it would give me a better QOL. Everybody seems perfectly happy with 130 bpm - I was 135 bpm at the surgery 5 days ago and the dr and second opinion dr both said that was fine.
When you say that your afib has settled at 130. Are you on rate control drugs to keep it at 130? Personally, at a minimum, I'd challenge the doctors and say you're not having a very good quality of life at 130bmp and you would like to have your afib controlled at a lower rate. If they don't give you a good answer, I'd seek opinions elsewhere.
Thank you James. I’m laying in bed now frequently with one arm behind my head as Jean suggested and I can hardly feel it (although I can’t really sleep this way. If I’m in conversation I can’t tell. But I can’t walk or eat without heart being very reactive.
Not that familiar with bisoprolol but maybe they feel you are maxed out? Others more familiar can chime in. Here, in states, they sometimes combine a beta blocker with a calcium channel blocker to lower rate. You might also ask them to either increase the Flec dose or at least if you can use an extra PIP dose. And I still don't understand why they left you in afib without ACs. I understand you may have limited opinions per your system but if you can afford it, a private consult might make sense at this point.
Bisoprolol max is 10 mg and I have taken an extra 2.5 mg when my heart has been especially active. I have written to my EP ( privately) to ask about the ACs and say their instruction hasn’t been followed.
So you have a private ep but they cannot prescribe an AC? What does your ep say about your rate management? Are they also happy with 130bmp? Maybe someone more local can give you advice how to better navigate your system where your ep seems to make sense and your GP doesn't
I was on Bisoprolol and couldn't get my heart rate above 130 bpm during exercise so I came off it and now control it with my diet by avoiding high calcium foods. (No cheese, milk, butter, yoghurt etc) My maximum while exercising hard is 154 bpm. Laying in bed it is 60 bpm or lower. Depending on my BP. This may not work for you of course, but you must go on an anti coagulant immediately in my view. So change your Dr and get some proper care ASAP. Your current GP sounds incompetent and lacking in basic common sense to me. He is gambling with your brain.
It's important with lipoedema to exercise but how can you with your excessive heart rate making you feel so bad?
Yes, you can still have an ablation when in persistent AF. I'm surprised you've been left at that rate. My GP sent me to A&E at a rate of 124, she said I'd been at that level for too long. Actually rang me at home and asked to see me next day for an ECG. I don't understand why you've been told it's ok.Feel really sorry your left like that. What medication are you on?
Please check out MummyLuv's post on this forum. Personally, I could not live with having a constant flutter and 130bpm HR.
Alison had (privately) a Cox Maze IV procedure in London 12 days ago,
She is a few years younger than yourself.
The procedure is to scar the outside of the heart in a maze-like pattern to stop errant signals affecting the atria. She also had the Left Atrial Appendage (LAA) clipped, so no need for anti-coagulants.
Alison was persistent AFib for five years or so before the procedure, and is now in NSR.
She is regularly posting her progress and has done loads and loads of research which she shared with us on this forum.
If you are in the US, search for the Wolf Mini Maze which is a similar thoracoscopic, minimally invasive, procedure to ablate the errant nerves on the outside of the heart and the clipping of the LAA.
"I have been on the list for an ablation for 18 months now - but I’m too heavy - when it is my turn they are likely to refuse me."
I have had an ablation myself and was unaware of any restriction of that kind. Is a weight requirement really enforced and why? How is it fair to allow a person to suffer because of their weight? Also, you sound as though you were exercising before and had an active life. I can't imagine why you would be refused. It doesn't seem humane.
This study concludes that the procedure would be safe enough regardless:
Thank you for your reply. My EP first told me that he wouldn’t put me through for ablation until I lost 3-4 stones. I gave him the proof of my lipodema and he said he would recommend me for the procedure. I was asking him how long ( after about a year in the queue) and he said that I would probably be refused because of my weight regardless of the lipodema and that he had no say in it.
Your case is very similar to mine - I have already had ablations x 2 and & in March I was up at 130 all the time rising on movement. I’d started to be breathless last summer and put it down to being older and unfit (and gaining weight) but as I didn’t feel arrhythmia like previous never though it had returned. I was told at 130 that could continue and beta blocker was raised with little effect so had cardioversion. They can only cardiovert if in arrhythmia at the time (if you went in on the day and were NSR you’d be sent away.I was told weight loss improves chances of staying in NSR and I stayed in it for a few days.
I’ve been put on Flecainide which has helped despite couple of side effects that are better than AF
Sorry I don’t know about your lipoedema and how to lose weight but they should be trying to reduce that rate - don’t know if you’re in position to go private to cardiologist (electrophysiologist) even if just for initial consultation. I you can get some help
Jean when I had a follow up ecg at my local hospital my heart rate was 135.They were concerned but still let me out without any advice.I have just had a flutter ablation so 9 months of high heart rate.Its awful.
Hi Jean. I have just turned 70. I have been told some years ago that I have AF. Had lots of tests. I am still fairly fit and active and walk most days. I don't get out of breath. no more than any other fairly fit 70 year old. I have been on 60mg Edoxaban lixiana for 3 or 4 years. I have been on Bisoprolo Fumarate for over 2 years. They upped the dose to 3.75mg about 1 year ago. My heart beats at 53 to 65 beats per minute and blood pressure is normal.I have these episodes which I am having now because I am in stillness at the computer. It feels though that the heart is thumping slightly. But it isn't. But it is debilitating and I get like a buzzing in my head and a slight light headedness. In fact it is very tiring and horrible. The last couple of nights in bed laying on my left side I can feel it thumping out of sync. and I have to move. Once I am asleep it doesn't affect me. But I never stay asleep above 2 hours. I try to explain this to our GP. (obviously over the phone these days)They just suggest increasing the dose of Beta Blocker. I wonder if you have heard this story before and could make any suggestions ?
Hi Terry, when I feel my heart start to thump I immediately start doing deep breathing, taking the breath right down to the stomach, not just to the chest. If that should fail and it rarely does, I search for a slow heartbeat on YouTube and listen to that. The less attention you give your heart the better it will be, become anxious and it's like the anxiety feeds it.
Years ago I started to notice that as soon as I was due to see my EP my heart would behave. If I was given a heart monitor to wear, well during that time I would feel like I could climb mountains and my heart rate would be perfect. Go to A&E because of a racing heart and not long after being there it would calm down, because I felt safe. This all pointed to anxiety keeping my AF going.
I think that as we grow older and sit for long spells, we do shallow breathing and the heart protests, it needs more oxygen, so try and remember to take some deep breaths when sitting for long spells. I believe this deeper breathing came to us naturally when we were young.
A lot of members here find that they can't sleep on their left side or it will trigger an AF attack. I can't sleep on my left, immediately I do my heart will play up.
It sounds like all in all you're doing quite well right now.
Sounds exactly like my story.I was convinced I had a fib but I have just had (16th may) an ablation where they found flutter.My kardia constantly says a fib.Im left wondering now if I will need another ablation down the line.Those thumps at night are rotten.I describe them to hubby like a misfiring engine and you feel every one.
Here are some more things you can try to get you back into sinus rhythm. These have been collected by me from this site over the years.
I am a therapist in private practice for over 20yrs.One of my therapies is yoga based. Having quite an accurate knowledge of anatomy,neurology and physiology also having PAF I have found this technique helps me immensely when my heart is fluttering like crazy. Make yourself comfortable either on a bed or lying on the floor,position a pillow under you head, Raise your left arm in an extension position as if you are doing the backward crawl,Stretch as much as you can and imagine that it is stretching your heart muscle...I bend my arm and position my hand under my head palm upwards.. Stay in that position for as long as you can or until the fluttering subsides...At the same time I think of something pleasant.It does not matter what you think about as long as it is a pleasant thought for you. This stops my heart jumping about almost instantly....I also place my right hand over my heart area...Don't panic and just keep calm thinking pleasant thoughts....I do hope this helps you. Kind Regards.C
As someone else who finds yoga breathing and some positions helpful, I would love to try (xxxx) suggestion, but lying down flat tends to make things worse for me. My most helpful position, taught me by a lovely yoga teacher, is based on a yoga forward bend. I sit up with my legs outstretched in front of me and a pillow under my knees, and then bend forward from the hips not the waist, with my arms relaxed but outstretched towards my ankles, and breath deeply and slowly. It's not so good on a full stomach and is more comfortable with your knees slightly apart, and I guess you have to be a bit flexible to find it comfortable, but it has proved to be a great help.
I agree with (xxxx) that staying calm and focusing on something pleasant is a must, and I've even fallen asleep like this as most of my episodes occur at night. All the best Liz
Finally, like AV nodal reentry, some people have recurrent rapid rhythms that are infrequent and easy to self-control by using various methods to increase neural slowing to the AV node (so-called, "vagal maneuvers"). Using these maneuvers, one can sometimes stop the arrhythmia. These maneuvers include:
Bearing down forcefully like you're having a bowel movement for 5-10 seconds, then slowly exhaling.in the neck while lying down for approximately 5 seconds
Placing very cold (soaked in ICE water) cloth on the face abruptly.
There's a yoga breathing exercise that has worked for me before. Lie on your back, bend your knees up so they are above your hips and your lower legs are at 90 degrees. Take a breath in for a count of 4 then breathe out for a count of at least 8. As you breathe out, bring your knees into your chest so you curl into a ball. When you think you've got all the air out of your lungs, try and breathe out more! Breathe in again for 4 and release your legs out to the starting position. Repeat several times. It helps to reset the diaphragm and focus should be on a good long out-breath.
Wow. Thank you Jean - I have tried these and will keep trying. The curl up in a ball one certainly lowers my heart rate and putting your hand behind your head helps with the thumps.
I tried the curling into a ball on Easter Sunday after reading it on here Jean. Went back into NSR after repeating it a couple of times. I couldn’t believe it. Thank you so much. Was it a fluke? Who cares ...... I shall do it again if and when necessary.
Hi, you're classed as in persistent AF if it last for 7 days or more. My brother is in it and hardly notices. But he is medicated to stay below 100 as I understand it. It sounds like one of your compounding issues is the condition that causes your heaviness because I'd guess this means your heart has to work harder. Presumably this is causing the resting high rate and the breathlessness too, which must be miserable. It's always hard when there are several health factors involved and I'm wondering if what you need to do with you is sit down with your GP and discuss all these factors and what help you can get. I.e. not just thinking about one factor at a time. And you certainly can have ablation if you're in persistent AF. All they're doing g at present it seems is keeping you stable.
Just concerned you are not on AC whilst all this is going on. I was on soluble aspirin for years before I had a TIA and I would suggest you take one daily until you get AC help. Always take it with food but it’s a blood clot reducer and better than nothing.
I'm assuming you are already taking Magnesium as it has certainly helped very many people, including a dramatic improvement in my permanent AF. There is nothing to be lost in taking it as it cannot be overdosed or do any harm and most people have too little in a modern diet.
The longest I’ve been in afib before self converting was seven days, fingers crossed for you and hope you convert.
I was stuck in afib a few years ago at the same rate as you and felt utterly dreadful, as soon as I got up to move about it went up to 160.
Have a kardia to self check.
I felt really disabled by it, crippling symptoms, lovely gp had done an urgent referral but nothing was happening after four weeks and my husband took me to a and e one afternoon as I just felt so ill.
they tried various drips which unfortunately didn’t work.
They kept me in overnight, I spoke to their cardiologist and he put me down for cardioversion asap though it took me another six weeks to get it through warfarin testing and staff holidays.
I was at my wits end when I finally had it done.
Eventually saw an EP who put me on flecainade to hopefully keep it at bay. I’m in same position as you regarding ablation. He thought it would not work due to my weight and stretching of my heart.
I spoke to a paramedic yesterday, an ambulance was called after I passed out ( in normal rhythm) and my husband panicked and the staff where we were called an ambulance, told him about the previous wait at 130 bpm and he was horrified.
I really would try going to a and e again, they were brilliant with me, I really feel for you and hope you get some help.
Try to lie on your back and put your legs up against the wall for a while - it worked for me to bring my rate back back into sinus and the NHS are trialing it as A&E instead of administering Adenosine. It might help bring temp relief. Good luck and I am sure you will get sorted soon xx
I've felt like that many times and was told to go to A&E immediately. When you get there make sure they understand how terrible you feel. Don't be stoic, I've learnt that stoics get ignored! Good luck x
The nurse in my local hospital said to me once "you need to make more fuss. Tell them you can't breathe, cant hardly walk, feel sick and have chest pains. And KEEP telling them until they listen. You are too brave " 🤣🤣🤣🤣
I am so sorry to hear what you have been going through Rhiannonimity1 - it really doesn't seem right! On Saturday I was admitted to the Acute Medical Unit and they wouldn't release me until the meds were controlling my rate below 110bpm. I was allowed home, still in AF, my heart was only fluctuating between 90 and 110. I have also been put on ACs - this became urgent to the doctors when I was diagnosed with Type 2 Diabetes a few weeks ago. Whilst in hospital on Saturday I met with a Cardiologist - he upped my meds, told me I must not miss any dose of the AC and has put me in for an ablation. I have been taken off Bisoprolol and I am now on a combination of Diltiazem (a calcium blocker) and Flecainide. If I have understood this right one is a rate control the other affects the rhythm. My AF feels like it is moving towards becoming permanent which I am really worried about because I know I wouldn't be able to function. I really hope you are able to get what you need so that the AF and rate under control. Take care.
Your heart is obviously struggling to keep up. I had the same for six days, went to A&E when I got up one morning and felt too dizzy to do anything and was given digoxin to try to convert + lower rate. I converted just as they were admitting me to a ward which was a bit frustrating because I’d been promised a cardiology consult as my case is complicated - not allowed Flecainide, bisoprolol etc, just low dose diltiazem. I think you may have the same problem with a higher dose of rate control meds because when you convert to sinus your rate will go much too low. I’m told my only solution to a similar situation would be a pacemaker.
I would stick to frequent snacks instead of full meals if possible - I can’t digest much when in fast AF. Probably you need carbs to keep your strength up at the moment but when you get out of this episode maybe you could try the Fast 800 diet?
Your rate should be under 100bpm and I don’t think it’s acceptable to say you are ok at 130+ 😡 Maybe there’s a reason we are not aware of why they won’t try harder so I think you need an in depth discussion about your whole situation ❤️🩹
Pre-Covid my wife was admitted via A&E when PAF had gone beyond 7 days in duration, was peaking at 140 and she had pains in chest. After 7 days in hospital, having had a failed CV, and trialling various mixes of Bisoprolol and Digoxin she was discharged when they got her resting HR under 90. She is also on ACs. In my non-medical opinion I would not accept being discharged with a HR of 130.
Wife self reverted next day....but episodes are now getting more frequent again.
Just an update. I was sent in an ambulance to hospital last night with a very high heart rate. This time I’m in flutter not fibrillation. This doctor went through the nice guidelines and showed me that the guidelines state no ACs for women with a score of 1. Looks like they are upping my bisoprolol though.
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New to Forum please could you help with some answers
Persistent/ permanent AF episode and exercise 
