I have been in PAF on and off for some years but the last 12 months I go a lot longer in AF and do not revert back without a Cardioversion.
I have had a third ablation 5 weeks ago but for the last 3 1/2 weeks I have been back in AF.
I am on list for cardioversion again and need to talk through my options as I think they will now say the time has come for a pace maker A/V node as my last resort !!!
However in the mean time I feel so ill my heart continues to race between 120 and 170 I am so short of breath getting upstairs is so hard and sleep near impossible.
How long do I sit here waiting ??? My Arythmia nurse basically says it won’t kill me but I will feel crap and GP just prescribed Digoxin via phone call appointment.
I have exhausted all the meds due to sensitivity to them so only on Riviraxoban
Thanks
Exhausted confused and very low in mood 🤦♀️🤦♀️🤦♀️
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Lainie2875
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When I had PAF / Flutter in the early days I too was in your position. Sometimes I had associated arm and neck pain, and aching in the chest. I couldn't even bend down to put on a pair of shoes without feeling like I was going to pass out. The stairs comment you made rang true with me because I couldn't even get to the top without going very dizzy and on the verge of collapse - not being able to catch my breath.
The cardiac outreach nurse once said the same as yours did - it won't kill you and "you don't need to come to ED unless you're on the floor"
But resting HR of 150-200 made me feel so so awful and symptomatic I just couldn't cope. I couldn't manage my symptoms, I did feel like I'd pass out from doing the slightest activity.
Whenever I made it into ED I was never turned away. They always said I did the right thing coming in. This was when meds didn't work and I didn't revert after trying all the tricks.
Usually even after IV flecanaide the only thing that would work was a DC cardioversion under sedation in resus.
5 ablations later (last being 2019) and I've had various short-lived AF episodes since but I now don't get symptoms anywhere near as severe. I take bisoprolol 10mg and a high dose of Flecanide for rapid rate control and I revert back within 24-36 hours. Any longer than the 36 and I'm advised to go to ED for a check.
I get how low it makes you feel. I did/do get that feeling of dread and resignation when the heart flips out. It felt like every time it happened I was being knocked down again. And when you revert its like a huge physical and mental weight is lifted.
Happy to answer any questions you might have. Unfortunately persistent PAF is often accompanied by the big black dog of depression.
Yes you are right I do feel depressed and have very low moods, I am very emotional and although my partner is an absolute angel I still feel very lonely.I have been on all the drugs but can’t tolerate them and refuse Amiodarone which we still use in UK
I am or was a young 65 year old with 4 lively great grandchildren and I am missing out on their adventures that I was such a big part of 🤦♀️🤦♀️🤦♀️
I just want my life back and someone to listen to me.
Covid has taken over our medical services here so everything’s behind or backed up it’s crazy
That's true my partner was very supportive (and is) as well as anxious about every time I slipped into AF. But you still feel useless and alone when it hits.
At one point I did have an amiodrone infusion over 23 hours and then a maintained dose oral, I felt OK and I had been on it's less potent little sister Dronedarone for a while before hand.
Not sure if you are on any meds at the minute, anti coagulants etc. Or if you have identified any triggers or things which make your symptoms worse?
I only take Rivoraxoban and now 1.25 digoxin but they have tried digoxin before and it had no effect on AF so I think they are just stabbing in dark and it’s a case of anything’s better than nothingProb is a lot of these drugs are so potent like poison !!!
Beta blockers cause me BP issues so they are out too.
I have always been against the idea of pacemaker etc as they keep saying last resort but given how poorly I am I would go in tomorrow for it doing
I feel like I am just going to die and yes people say that’s dramatic I know but unless it’s happening to them they have no idea 🤦♀️
Not dramatic at all, I completely understand how it makes you feel. The mental effects of it are just as bad as the physical. It's probably time to have a conversation about the next steps if you are so unwell, you need a better quality of life and the pacemaker can provide it.
That's what we're here for Lainie2875 , we might not be able to solve the problems but we can share them. You're certainly not alone in how you feel. Take the very best of care and keep us updated.
Lainie, we have all been there before and it is more likely that you win the lottery than die unless you are stupid enough to try and run a marathon. You say you want your life back but you still have it---just different. Be thankful as there are far worse things to have that don't allow that.
Come on now chin up and positivity. You will get through this.
Going to A&E during COVID risks infection. In the past 12 months an ambulance crew has decided that I need to be addmitted, albeit not for my AF. At both times I was placed in an isolation bedroom overnight whilst they tested for COVID, then dealt with the issue the following day.
We all respond differently to AF. Because I had AF whilst in hospital for another reason, I was given amiodarone in a saline drip. The consequence was the consultant asking permission to ring my wife at 1:15 am, as they wanted to sedate me in ICU and put me on mechanical ventilation: the chance of survival is 50% hence the call to my wife. That, and surviving a subsequent stroke gave me a different view of my AF, and my current PSA figure with abnormal prostate cells. I recall that Bob had his prostate removed, so that will have changed his view of his AF.
Hi Lainie, I just read some studies of how acupuncture with a professional who is skilled in Chinese medicine has a very high rate of success at stopping atrial fib episodes. I started acupuncture with a Chinese doctor 2 weeks ago and although it is early days, I seem to have gotten rid of so many PVC and PACs, which is how the healing seems to start. This is reported to have a high rate of success, with no bad side effects. Even if it is not a perfect cure, it might give you some relief. My heart feels calmer; acu is a very ancient system which aims to put the body back in balance. Seek out someone with yrs of experience. Best wishes to you in finding some relief… after 2-3 treatments I was improving, and he said it is cumulative. I look forward to the treatments, they are relaxing and also help me with anxiety.
One more thing, since you can't take beta blockers.... One study I reviewed (I'm a med. researcher) concluded (surprised me) that acupuncture was more effective than beta blockers at ending atrial fib episodes! Search internet for "acu & afib" to see studies. BB's don't help me, either, so I am grateful that acu seems to be going in the right direction for me. I have a lot of anxiety, and the acu dr. said that is actually what is promoting my afib episodes, & acu is good for anxiety. The Chinese doctors who know TCM (Traditional Chinese Medicine) usu. seem to be the most experienced and successful with this. Hoping you can find someone experienced near you. Blessings and all good results....
Your question was asked at our last support group meeting and the answer was to go to a and E if you feel ill and if your heart rate is too high- and that would clearly be the case with 170 . Personally I feel rubbish with 150 and above and wouldn't leave that for too long If in A and E at least they may try things to stop the high rate. we need to remember that the real rate of the atria is much higher that the ventricular rate so that's why we feel so bad. I do hope it has settled down Deep breathing and resting can slow things down but I haven't find anything else that works and I can't have most medications
A & E isn't just for people who need stitches for a cut. I use Flecainide as my PIP and if that didn't work ( and hasn't always ) would call 111 and they advise A & E and that is good enough for me. BTW I couldn't handle Amiodarone but can Dronedarone.
I know you are absolutely right it’s just when you see how backed up they are and witness how many people don’t need to be there it makes me feel guilty goingHowever I have waited long enough now and will be going one way or the other today.
I hate the drugs the side effects are horrific for some of them I need to be discussing my options now with someone who knows what they are doing and allows me the time I need to talk it through.
I'm the same with the guilt but am learning that the mental side of things is as important as the actual AF issue and you have to think of yourself occasionally. With meds I think it is fair to say that even the best consultants don't know all the answers and it is a case of trying something to see what does the trick, equally our bodies change and become immune to certain meds after awhile, so the bottom line is that we need to be given patience and understanding and not to be fobbed off!! Good luck.
Only you know how bad you feel and we all have different levels of tolerance. Listen to your body when deciding if you need help and support by going to A and E or if you can sit it out at home. A few thoughts- you're in the blanking period and it's not unusual to have AF then. I had mine during the first 3 weeks- AF on and off almost all the time. Consider that it might be part of the healing process.
COVID and hospitals. The Omicron wave has peaked currently and new cases are falling. Unless its a poorly run hospital don't be put off going if you need it. I went right in the peak of the Delta wave and even spent a night in. Around 48 hours altogether. I was OK. Pack an emergency hospital bag with a good quality mask or two in it and anything else you need to feel comfortable. Even now, and I'm a lot more stable, I keep a small bag in the corner in the bedroom. It's my safety blanket.
Make yourself comfortable as you can and do your best to stay calm whil waiting for the cardioversion
I have had AF many years but always reverted back so learned to live with feeling off for a few days now and then but this is a whole new level and since May 2020 I have had much longer more severe symptoms with several admissionsI do have a bag ready lol and yes I think your right I just need to turn up and sit it out hopefully get admitted and bring the Cardioversion forward ( well in an ideal world)
I am just so tired but can’t sleep I seem to drift off then my breathing slows so much I jump up panicking and gasping. Never had this before
Have you been checked for sleep apnoea as it seems over 50% of AF sufferers have that? The symptoms you've just described do sound rather like that condition.
That sounds horrible. I see someone has suggested sleep apnoea as a culprit and what you've described as night time events sounds like it. My other half had it till he lost some weight. Not suggesting! If you DO have sleep apnoea it'll mess with your AF for sure. Thinking about A and E, in theory if you keep needing to go in, that ought to move you further up the list. Have you made clear to your arrhythmia nurse that things have really escalated for you? Keep us posted.
I was told to go to A&E with fast AF. I go to the bug teaching hospital rather than my local hospital as former will do a DCCV immediately. I take a full history of all my episodes and all the different chemical cardioversion drugs which have been tried and failed. Hope you feel better soon and hope this is just a blip and ablation has worked xx
No I can’t tolerate the meds they have tried everything now back on digoxin till they cardiovert me again yes your right I am going to A&E todayCheers best wishes
Gosh your having a rough time, I empathise with you, it may not kill us but that doesn’t stop it feeling like it is, it also doesn’t stop the feeling of loss and anger and the what ifs. I also have been offered a pacemaker as a last resort and I am also reluctant, it’s hard to explain why but to me it feels final and almost like we’re giving up trying so let’s do what we always do. My GP is fab and basically will do an ecg in surgery if it confirms AF over 130 she tries to get me into the CDU unit if no space she insists on A&E. what she does do, is doesn’t tell me that others cope, and how common it is, she can see how ill I feel and how frightened I am. Do what’s right for you don’t just let them treat you like 1 of many. You are an individual with your own needs, tolerance and values, not a medical nuisance. Good luck.
Hi Lainie we are all different but I too used to race around 170 and found it impossible to live. I just kept presenting. Every time. In the end they were as sick of seeing me as I was of going and they fast tracked me and resolved it. It’s one method of attack.
i was in the same position 6months after heart surgary hb 218 talen by amblulance straight to cardiac ward not a&e and told they had got to stop it as all my organs will close down so after trying a drug which didnt work was given electric shock of 360juls that stop it but that was back in 2003 now in af ,heart failure mvr more than anything i cant breath any think simple in the house makes me out of breath and they cant find out way they say it is not my heart i have the same problems with meds but if my heart rate goes above 150 it would be 999 no question
I have also been told “ it won’t kill you “another one is “well, everyone gets breathless. “ Looking after people with various afib conditions, cardio staff need help to realise how it makes us feel ? The exhaustion from afib episodes and the breathlessness is not just like a fast heartbeat or breathless from running up stairs, we try to ‘ pull ‘ air into our lungs but it doesn’t do it’s job and passing out is a real possibility. We don’t want sympathy, just help and understanding . I’m sure you’ll get the help you need Lainie, keep persisting to see your cardiologist and hopefully they can try something new to stabilise you.
Hi Lainie. I can relate to your situation completely. It's kind of easy for folk to say 'it wont kill you' but when you feel so crap and down you want more reassurance. I'm heading for my 4th ablation. Never had a cardioversion. Was offered a pace and AV node ablate but opted for another ablation due to being only 66. My EP agreed with me but about 9 months on I have not heard anything, cant get hold of the dept, have not had any confirmation so I called the heart nurse who was great on the phone. She is going to try and find out what she can. Also I contacted my dr re not being able to sleep due to Afib and he might get back to me in 6 weeks as its a routine appointment! I'm looking after my partner after him coming out of hospital and doing all the things he would normally do, like walking the dog, this is the 7th week. My energy levels are shot. So if it's any help I'm thinking of you whilst you are struggling. I take apixaban and am so appreciative that we have such drugs. I hope you get the help you need and wish you well. Hang on in there. Do the things that relax you and look after your self . I dont know your full situation but please put you first if you can. Once my partner is fully recovered I can do the same for me. 🌞
Thank you for thinking of me while you are suffering.I was discharged home on Friday on a cocktail of drugs but still in AF
However they now have me on Ramipril digoxin and Etelerone some of which are to strengthen my heart which has been weakened due to the constant AF.
Diuretics to keep the fluid at bay beta blockers to try slow heart rate.
I now have contacts for the Heart Failure team who concentrate on the effects on my heart rather that only on the AF like the Arythmia nurses seem to do.
Had I not gone to A&E I would have been blue lighted of that I am sure as my lungs were filling with fluid by the day and despite contacting Arythmia team and GP I was discouraged from going to A&E
When I got the A&E they couldn’t believe I had left it so long !!!they don’t keep you in hospital for 4 days for no reason .
On the 21 Jan my Arythmia nurse said he would contact my GP to ask for a prescription for digoxin but as it was Fri and he was in a clinic he couldn’t do it till Monday so suggested I try myself!!!
I did and GP did me a prescription
Today 9 days after the conversation with Arythmia nurse I got a copy of the letter he sent to GP so i assume that’s arrived today meaning I wouldn’t have got my digoxin till tomorrow !!! Not good enough when your so I’ll gasping for breath and frightened to death is it ??
Leeds infirmary Heart wards are amazing they really looked after me and more importantly they listened to me thank God.
I still feel tired but this is all part of it and my meds will prob need to be tweaked but I feel so much better than this time last week that’s for sure.
Glad you are feeling better, sorry for what you went through. Somebody on the phone or in a forum like this don't know how YOU feel and shouldn't discourage you from seeking medical help, or going to A&E if that's what you think you need.
You are so kind, thank you. I'm glad you feel better than this time last week. But, god things are a mess when you have to work so hard to get some help. Its scary. I just hope that now you are home and feeling a bit better things will improve.
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