AF ongoing

[JoB68]

I was admitted to A&E last week. This was my third episode of AF. Unfortunately this time I did not return to sinus rhythm. I am now home but still in AF, 4 days later. I have been prescribed 1.25 mg of Bisprolol twice a day as I have a low resting heart rate. I feel so tired but anxious about the way forward. Any advice will be greatly appreciated please. Many thanks.

[jeanjeannie50]

Welcome to the forum Jo. You'll find we are a friendly group always ready to help in any way we can. Just about all of us have been exactly where you are now.

So many people have AF these days and what you need to know is that it's most unlikely to kill you.

How are you feeling that's the most important question? Some lucky people are not even aware that they are in AF, while others suffer terribly.

I've been in constant AF for almost 5 years now and my heart has settled down to a beat between 60-90bpm. In total I've had it for 19 years, but it's so much better than it used to be, like you I would spend time in hospital.

Jean

[JoB68 in reply to jeanjeannie50]

Thank you so much for replying jeanjeannie50. I am just so tired. I had to work today and really struggled. My HR has fluctuated between 43 and 147 and I just wish I could do something to stop it! It’s reassuring to learn that you can live with it. Thank you

[jeanjeannie50 in reply to JoB68]

Are you under a cardiologist or better still an electrophysiologist (someone who specialises in heart rhythms)? Sam one of the administrators on this forum has put a post on here today with links to information about AF, it would be a good start for you to read them.Something needs to be done to prevent your heart rate from swinging from high to low. The tablet you are taking is a beta blocker which just slows the heart rate. What you may need is a pill to control your heart rhythm. I believe these cannot be prescribed by GPS. Why not see if you can see a heart consultant privately. Cost is generally about £200-£300.

I can imagine how drained you must feel with your heart rhythm going up and down. I used to have the same thing. I hope you have a desk job, or one that involves just sitting? I will send you more info tomorrow. Xx

[Ppiman]

Oh dear - poor you. You most certainly will feel tired. My longest episode recently was about 8 hours with a rate between 85-160bpm. I would think and hope that an echocardiogram is being planned for you at your local hospital, along with some high quality 12-lead ECGs. A cardiologist will then be well placed to treat your condition better.

It might be worth adding that as fearful as AF makes us, even to the point of panic at times, the AF itself is in a relatively benign part of the heart. The important two chambers, the ventricles at the bottom, are not too seriously affected in most people and, often, a beta-blocker of similar will be all that is needed. I am taking just that (bisoprolol 1.25mg) but I am also on a waiting list for an ablation.

The main danger of AF is from the formation of tiny blood clots and that is why an anticoagulant is often prescribed (the risk of these forming is determined by your GP or specialist using a special calculation). I am prescribed apixaban for this reason.

Steve

[jeanjeannie50]

Hi Jo

How are you feeling today?

Having had AF for 19 years, three ablations (where they go up through your groin to burn or freeze the inside of the heart the rogue pulses often come from) and numerous cardioversions (electric shock to put the heart back into it's correct rhythm) my advice to everyone diagnosed with AF is the following:

1. Be Aware you are most unlikely to die from Atrial Fibrillation (AF). I used to think that the way my heart bounced around I would surely be found dead next day. Still here though!

2. Changing your diet to a more plant based one, avoiding any foods containing artificial additives, reducing your intake of red meat and having more chicken and fish, not allowing yourself to become dehydrated, cutting back on sugar, alcohol and caffeine, also losing weight (if it's needed) will all have a beneficial effect on your AF. Artificial sweeteners were a sure trigger for my attacks. How I wish I'd known all of this before having any of my ablations. Would I have listened if anyone had told me? Probably not, because I believed ablations would cure me - three didn't! They have helped some people though and my AF now is not so severe.

3. This is a hard one, but looking at gadgets that show your pulse and AF will make you anxious and anxiety feeds AF. I was obsessed with what my heart was doing for about the first ten+ years of my AF journey and my attacks were so debilitating I'd end up in a hospital ward, it has taken me a long time to take my mind off this subject and get on with living. The less I think about it, the better I feel. Now I used to feel cross with people who suggested I stop looking at my pulse rate machines, I thought that their AF couldn't be as bad as mine and they didn't understand how poorly attacks made some of us feel. I would get cross with anyone who said they could still go on holiday and carry on life as normal. They made me feel evil, by not understanding how ill I felt! In our minds AF is only as bad as we have experienced, for some attacks are mild for others they're more severe.

4. Make sure you don't slouch, or unwittingly do shallow breathing while watching tv or if you're online. If you do your heart will protest. Also avoid tight clothing around your waist or chest.

5. Try supplementing with magnesium, any type except oxide (I use glycinate from YourSupplements and also take taurine, zinc, vitamin B complex, D3, K2 & C). I feel fine and there's little I can't do now, despite being in constant low rate AF. Or at least I think I am, I don't check these days.

6. If over 60 I would make sure that you’re taking an anticoagulant to prevent blood clots forming and causing a stroke. Note that they do not thin the blood in any way, just stop it from clotting so quickly. You should not notice any major difference in the way you bleed.

Hope this info will help you.

Jean

[JoB68 in reply to jeanjeannie50]

Hi jeanjeannie50, thank you for your very detailed advice. I am hoping I have been referred to a cardiologist but waiting to hear. In the meantime I shall do my best to adopt some of your recommended lifestyle changes. I’m feeling much stronger today in spite of still being in AF. The rate is not as wild as it was. I just miss my spin classes! Don’t think they would be a good idea at the moment, not that I have the energy!

[JoB68 in reply to jeanjeannie50]

Good evening jeanjeannie50, would you please let me know how you tried to combat the fatigue please? I’m still in AF but not fluctuating as much. I’m also not looking at my Apple Watch as much! However the fatigue really is getting the better of me. Any advice will be appreciated please. I’ve still not received an appointment with cardiology.

[jeanjeannie50 in reply to JoB68]

I think you are a lot younger than me. So what may help me may not be for you. My job was mostly desk based. So feeling drained didn't really bother me. There were also nurses where I worked and they were there if I needed attention. I am a lot further on in having AF than you are as I've had AF for 19 years. Please try to eat food that has no artificial additives, the same with drinks. Artificial sweeteners were a sure trigger for my AF. Do not wear clothes that are snug around your torso. I used to listen on my phone to a slow heartbeat that was on YouTube. Search and you will find.

Jean

[Maglynne007]

Hi, I’ve just returned to SR after 10 days in AF - I was so worried as the longest AF has lasted with me is 3 days. Whilst in AF I had pains in my chest, shoulder and neck, feeling very tired and short of breath with little to no energy. I visited my GP on day 5 of AF as the symptoms were worry me. She arranged for me to attend the afternoon clinic to get a manual BP and and ECG done. Returned to clinic to get manual BP done but unfortunately the machine wasn’t working so dint get done. Had my ECG done but there was no one available to look at it so she advised me to go to A&E because of my symptoms (this was a waste of time because my heart rate was between 65-90bpm) so not considered dangerous, normally 50-55bpm, but off I went against my better judgement. They weren’t concerned with my ECG. They did, however, keep checking my BP because it was fluctuating from very high to normal. Bloods came back clear so was discharged from A&E even though still in AF. I didn’t want to go but the nurse insisted - 10 hours in A&E enough to put anyone off. I am now back to ‘normal’ but don’t wish to experience another 10 day episode anytime soon. I have an appt today to chat with another GP (he is also a cardiologist) to hopefully get further clarification and possibly emergency medication should I have another prolonged episode. Also my 6 monthly cardiology appt with my local hospital is scheduled for the end of September.

I understand exactly how you feel as I feel exactly the same and it is quite frightening even though we are told it is very common. I will say the longer my latest episode went on the less noticeable the symptoms became. I wear an Apple Watch so I always know I heart rate.

[JoB68 in reply to Maglynne007]

hello Maglynne007

Did you do anything that put you back in normal rhythm or did it just happen? It is disconcerting when they go on so long with no end in sight!

[Maglynne007 in reply to JoB68]

Hi, it just went back into NSR on its own. I was just sitting down in the living room and noticed my heart was beating in rhythm again.

[Vonnegut]

1.25 mg of Bisoprolol brought my heart rate down too low and I was taken off it after only three days. Consulted an EP privately who I found through the AFA and he introduced me to having a smart phone and Kardia! After I had sent him a recording of my heart in AF, he sent a prescription for Flecainide to my surgery for me to take as a PiP, with one of the Bisoprolols to be added on the extremely rare occasions when my heart rate exceeded 140 twenty minutes after taking the Flecainide. Now that I take it regularly, I have not had an episode for well over a year and a half and the last one arrived with covid which I tested positive for with no other symptoms, ended with an extra Flecainide PiP.

[JoB68 in reply to Vonnegut]

Thank you Vonnegut

I shall definitely ask for flecainide if I ever go back to normal rhythm. At least we can have some control over it then. I hope it continues to work for you.

[Vonnegut in reply to JoB68]

Thank you. I’m particularly pleased that it is still working now that I just take 50mg two hours after breakfast and 100mg before I settle down to sleep. Sadly, it might be increasing my fatigue and digestive problems but they have improved with a prebiotic taken in the evening. Hope it works for you too though we know we are all different.

[John3333333]

Speak to your GP about flecainide. Providing you are a suitable candidate, it sounds like you could benefit from flecainide as a PiP.

[JoB68 in reply to John3333333]

Thanks John3333333 I will do.

[DawnTX]

I certainly hope you are going to a cardiologist and EP. This is not something you learn on your own. Who gave you your prescription the hospital? Did they not ask or assign someone to you? I have never gone to the ER for my fib and not too long ago. I asked my EP if it would be helpful. He told me no that they can do for me would be to keep me stable and comfortable if I were in pain and that erratic. if it is arrhythmia, you need an EP as it was one explained to me EP is your electrician for your heart. Your cardiologist is the plumber for the other stuff of your heart.

it would be great if the meds work I started with the Cardiologist because most of our EP‘s require a recommendation and referral from one of them. It is like being referred to a neurologist. These doctors are the top of the food chain. There are fewer of them and they are very busy so your cardiologist will do the basic things to see where your problem is before he send you to the EP. the first day that I saw my cardiologist I was scheduled with my EP three days later. For me it was that urgent.

when I started with a fib and flutter a couple of years back, I went to my primary who did an EKG and sent me directly to my cardiologist who worked in hand with an EP within a week. I had my first ablation before I even left the EP I was put on, Aunt and beta blocker. I have had tachycardia from my first doctor visit with them.

it takes a while to figure out all the different steps. The only reason I went to my primary was because I woke up on the floor and smashed my face into concrete, breaking teeth, etc. I didn’t even consider it was about my heart believe it or not I blacked out twice that night, and waited two days to see the primary just so you know this is NOT the right way to handle things. I crawled into bed and went to sleep. The fact I am still here is a miracle. there is no time to wait. Don’t be a dummy like me what was really bad is I was a medic. they say doctors and nurses make the worst patients add medic to that

ask questions don’t get into heavy technical. You don’t need that your doctors got that for you. You can ask about things you can expect and as I mentioned previously, keep a diary when you get your a fib and write down what you were doing or eating, etc. my worst are, even now over eating, hot weather because it drops my blood pressure and puts me down on the ground, I do not perspire so that’s a bad thing. I don’t realize I am overheating. If you’re like me, you have to use common sense we had months of hundred degree temperatures , we just got chilly weather in the 80s. It’s going back to the high 90s probably with the feels like. I also had icy cold sangria only the second time I’ve had alcohol since I got a fib and now I have a pacemaker I don’t know if that affected me because I did so many wrong things at one time within just a couple of hours because we did errands and went to lunch. For the first time since having my pacemaker, I had a horrible time with flutter and I thought I felt a fib now when you have an AV node ablation you will not get the damage as you did before because the pacemaker is in charge. However, you are going to feel things that never will stop so when you feel one don’t panic remember it cannot hurt you anymore. The AV node is part of the natural pacemaker and it has been turned off so to speak.

please please find an EP or if you must go to a cardiologist first, then do it. I do not know the procedure where you are insurance, etc. differs. I wouldn’t waste my time with a primary. That’s not their wheelhouse unless you have an emergency and have no one else.

as Jean mention, you probably won’t die of it keep in mind we are still able to have a heart attack so don’t ever ignore heart pain honestly, I don’t think about it. It’s just something not to forget can happen so you don’t ignore pain.

I am very different from you now because I have the pacemaker just be prepared that whatever you get done or take for medicine will not cure a fib or flutter. It’s a Band-Aid that gives you a break. Your meds could very well control your arrhythmia. Some people are very lucky, otherwise whatever you get done I hate to say it, but we must be prepared when they stop working or do not work. My first cardioversion worked for 3 1/2 weeks and was amazing. My second one was more than a failure. It was worse than that for me was pacemaker , best thing I ever had done if you get offered one say yes, please and run to your doctor and let him do it

a fib is a horrible little monster. If you haven’t read up on it, you will see how many people have it and how they expected to double we don’t know what’s causing it and it’s not in the same place for everyone. It’s like throwing a dart trying to figure where it’s going to rain on a weather report. As far as I’m concerned the best thing we can do when we have it as follow instructions and follow your gut about your doctors if you have a doctor that just does the same old thing over and over again look for a new one but first it sounds like you need to find one.

there are many happy people on here who have had a fib for years and have figured it out so here’s hoping you get one of those doctors like they did

I cannot tell you enough how good I feel these days. The worst for me is fatigue, which I think is one of my medication‘s not necessarily for my heart. Also remember, don’t blame your heart for everything. We have lots of parts in there that can act up. That is from my brilliant doctor as well. My EP. Another thing he addressed with me was my anxiety. He was right again. I didn’t think it was his bad but he could see.

all of this being said try to keep your head calm if you sit there and dwell on this, you will feel every little thing and will scare yourself to death. Live life be happy and behave lol

[Pigleywigley]

Hi Jo

As colleagues have said, we have all been right where you are. Feeling lonely, isolated, confused & scared.

I too have a PIP (pill in pocket) of flecanide and it works for me. I don’t self convert on my own back to normal but a PIP does for now. I waited 6 months for a cardio appmt from my A&E visit. In the meantime pester your GP.

Rachel