I have had AF for over four years now but since reading posts on here, I realise how much I don`t understand. I think the kind I have is long term persistent. I have had the treatment to try to re-start my heart but it was unsuccessful. I also have a leaky valve although I forgot to ask what is leaking.........blood........water? and where does it go to? Will it get worse?
I have read on here people saying they were in AFIB for a period of time and they were exhausted. Does that mean that sometimes their heart is working normally and sometimes not? Mine never works normally and I am permanently exhausted. Is that why? I manage during the day and try to keep my heart rate below 100 but by evening I feel so tired. I have a doctor`s appointment later this month but would be interested in any experiences others have. I am 76 and would say it`s my age but I have been like this for years, just seem to be getting worse.
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KathleenV
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Hi Kathleen, I was told I had AFib last September and I gather there are different sorts and the “permanent” sort we have is more manageable. I was put on a low dose beta blocker and an anticoagulant. This is to lessen the risk of a stroke which is at higher risk with AFib. I believe that some AFib patients get a serious episode from time to time that can be very scary and they need emergency attention.
Then, separately, in February, I discovered I have a severely leaking valve and this is causing heart failure. (An unnecessarily frightening term.)
I too am very fatigued but this is due to the heart failure/leaky valve NOT the AFib. I’ve seen a cardiologist about all this and he told me to come off the beta blocker and that has made an enormous improvement to my fatigue! I’m seeing him again next week when he will have seen my echocardiogram images and hopefully tell me the way forward with the valve issue.
Yes, valves leak the blood they should be controlling, but I understand these things can be fixed. The valves can be repaired or replaced and it’s pretty standard procedure these days.
Hello Classicfan, this is really interesting and informative, thank you. I am on bisoprolol which I think is a beta blocker and I have read on here it can make you very tired. I think they are to keep the heart rate down. Occasionally if I go a day without taking one then my heart rate shoots up very easily. I have only seen the cardiologist once because here you just go once every three years, though I did speak to one on the phone last year. I have an appointment with my GP later this month and this time I must make a list of questions I want to ask. You seem to be doing very well and coping emotionally too.
Yes, mine was Bisoprolol; I think it’s the default beta blocker and if it doesn’t suit you they give you something else. (Possibly cost is a consideration.)I’ve never had an adverse reaction to any medicine before and I was only taking 1.25 mg a day but the impact was noticeable. I was washed out by mid morning and felt I was dragging myself around. Even taking it at night instead of in the morning didn’t make much difference.
Yes, they slow down your heart rate. Since I stopped it my daily resting heart rate has gone from 67 to 74. I think that’s ok but I’ll find out when I see my man on Wednesday.
I was diagnosed with paroxysmal AFib in March this year. I was told at the hospital that when the heart is fibrillating heart function is reduced by 15 to 20%. Cleary, if heart efficiency is reduced by that much it is going to cause fatigue. I left the hospital on the day having been in AFib for about 6 hours before reverting to normal rhythm feeling like I had just done a marathon. So yes, if you are in permanent afib it will cause fatigue.
Hi Kathleen.Although I’m male (75) the tiredness symptoms are exactly the same , and I also have a leaking valve. My BPM is stubbornly over 100, which Digoxin is meant to be sorting out ( but.no change after a week).
Having been fit and active until March last year, I find this new ‘lifestyle’ pretty depressing , but reading others comments, it seems there may be treatments available.
All is not lost ; I’ve just played 18 holes of golf so deserve a snooze in the garden !
Hi. I also had atrial fib for 4 years after having my leaking heart valve removed and replaced with pigs tissue. I was on digoxin for about 3 years and then I had a stroke last November. I was taken off digoxin which I never had an issue with and was put on bisoprolol which has caused me lots of problems extreme tiredness and dizziness being just a few. I have trued to speak to my doctor about this but all she says is to see my stroke doctor. I was discharged from the hospital a month ago so as you can see it is very difficult to see my consultant now. I am also 77 years of age. I hope you feel better now that you know you are not alone.
Hello Pat, thanks for this information. Yes that`s one of the problems I think that it can be so difficult to see someone and when you do then I have found they seem to be too busy to explain things. I suppose it takes a long time to get over a stroke, hope you are feeling better by the day. Thanks for replying and let us know how you go on.
Hi Kathleen, I too have a long history of Afib. 6 years ago I kept having painful, pounding palpitations lasting around an hour. They came every couple of weeks. So I visited my GP who said it was Afib which I had never heard of.
I had an ECG but nothing showed up. The problem was they needed me to be in Afib before they could record it. I had a monitor but of course I was never in Afib when wearing it!
So I was told to call 999 and the ambulance crew would do it.
So I did. They took me to A & E as my heartbeat was jumping from 45 to 190 and I was in so much pain and exhausted.
These episodes have lasted between 6 to 20 hours and I was feeling so ill.
This has been going on for 6 years.
I've gone from 2.5 bisoprolol up to 10 bisoprolol. I had digoxin too, but felt so wiped out I asked to be taken off it.
No other medication was suitable for my condition but Amiodarone or a pacemaker. I tried Amiodarone last December, unfortunately I had a bad reaction to it, I developed oedema and a burning foot rash that turned into fluid filled blisters which took 5 months to heal! And I only took Amiodarone for 6 weeks! But the only benefit has been that since then my episodes have been less painful. Though now I'm having them every 3 days and they're lasting up to 40hours. So debilitating.
I had a failed ablation last August, apparently my heart had thickened with the 100 or so Afib episodes I've had.
The cardiologist had to abandon it after 40 minutes. Then by chance I was talking to another cardiologist on one of my many trips to A &E! He reviewed my case and diagnosed me with Hypertrophic Cardiomyopathy, an inherited heart disease. I now have heart failure too. So now I have the last resort which is a CRT pacemaker. Still having the episodes every 3 days though. Until I get a AV Node ablation I shall keep having them. It's usually 6 to 8 weeks after the pacemaker.
I try to be upbeat with all this, I'm 73 now but my life (my husband too) has been at a standstill for years. I'm hoping the pacemaker will change this.
Hello, try not to think of a pacemaker as a last resort because surely it isn`t. I know my neighbour lived with one for years and it seemed to help his quality of life. I find it can be hard to cope emotionally with living with a heart condition and knowing, and accepting your limitations. I have lived with exhaustion for many years before being diagnosed with AF and people used to say I was lazy, that I should do this or that, no-one understood, and I didn`t either, I thought maybe they were right. At least knowing means that I can explain if necessary and that really helps. Perhaps it will help you too, no-one can see your health problems in any case. I hope things will settle down and you will feel better day by day.
Hi Kathleen- I am sorry to hear you have not been to good and yes it is not your age- I would comment that there are not episodes of A fib as some of the other replies suggest- A fib is a condition that is there all the time- and has ups and downs usually when you have a cold or are not feeling yourself- this all contributes to episodes of tiredness and fatigue- I have recently had this explained to me at a recent consultation - I definitely think more information should be given to patients when first diagnosed - I found out when I asked the question myself- To everyone suffering with A fib dont be afraid to ask questions or seek further information if you do not already have it- look after your self and take care I hope you feel better soon
Thanks so much for taking the time to reply. Yes I had got mixed up with hearing some people talking about `episodes of A fib` but for me and many others it is there all the time.I start off each day feeling well, full of beans and good intentions I suppose but it doesn`t last unfortunately as I get tireder and tireder, the first time I go upstairs in a day is okay but by evening I am struggling to get up at all. Thanks.
Hi Kathleen, I started off having PVC’s (skipped heartbeats) when I was a child and I’m now nearly 76. A few months ago my cardiologist told me I now also have A fib and a leaky valve. My Bisoporlol has been increased to 10mg daily and the tiredness and fatigue has become a lot more intense. I have also started on Edoxaban blood thinners. I also have RA which in itself causes a lot of fatigue due to a weakened immune. After all these years of having heart problems,I would love a couple of days feeling normal and having a bit more energy.
Hello Breane,You sound so much like me. I am 76 now and although I was diagnosed with AFib four years ago I have been feeling tired for years. Of course, apparently it is not easily diagnosed so many people have it but don`t realise. I take 5 mg of apixaban twice a day and bisoprolol once a day in the morning. I assume you also have some kind of tablet to keep your heart rate low but I have read some posts on here that say bisoprolol can make you tired and make you gain weight! I assume low heart rate means more energy but I don`t know. My resting heart beat is in the 80s and the least thing sends it to over a hundred. Have you been tired for years? Do you have problems using your hands because of your arthiritis? Is there anything you can to do help?
Hello again, I take the Bisoporlol to try and lower my pulse rate which would then supposedly help regulate my heart but I haven’t found that to be the case. I take my own blood pressure and that has been higher of late. I recently had to wait six months for a phone call from the cardiologist( who I’ve never seen in person due to covid) just to get the result of a Holter monitor test I had done. I’m finding it very difficult to get much info about A fib so have to resort to the internet. Difficult to get a gp appointment too. My RA is not too bad as I’ve been taking meds for that for the last 12years so can still use my hands ok. The tiredness began once I was diagnosed with RA. Going up the stairs makes me very out of breath and my walking pace has become much slower. Apart from all that I am quite healthy !!!!! It’s hard work trying to be positive.!! Hope you are having a good day.
Hi Kathleen,Sorry to learn about your experiences with AFIB and I would like to share my experiences with you. I had my first episode back in 2005at the age of 63, was admitted to A&E and diagnosed with paroxysmal AFib for which I believe I was given a betablocker and which calmed after a few hours. I was discharged the following day with a huge dose of Aspirin plus a betablocker (Sotalol or Atenolol). A cardiologist who subsequently saw me as an outpatient told me I had 'faulty wiring' in my heart and to avoid ice cream, ice cold drinks etc as this could trigger AF)
I soldiered on in constant fear of a repeat episode and eventually in desparation made a private appt with another reputable cardiololgist who did various tests including an echocardiogram when it was discovered that I had a mild leak from my right mitral valve-he said I was suffering from ectopic heartbeats which triggered the AF and immediately put me on Flecainide 100mg to be taken twice a day. To try to be brief, I was provided with this drug for TWELVE YEARS during which time I regularly had the palpitations, heart bumps & jumps that I had become accustomed to for my entire life (always been a highly stressful person) BUT never had another AF episode. Still feeling stressed & anxious I then had another private consultation with a different cardiologist who was shocked to discover that I had been given Flecainide 100mg on repeat prescription for 12 years and pointed out that long-term use of this drug can cause other serious heart arythmias and complications, to go home and stop taking it immediately stating that he thought the AFib episode I had was a ONE-OFF!!
Since then I have now had ELEVEN more episodes of AF - 3 in 2020, 4 in 2021 and now 4 in 2022 - for two of which I was hospitalised over night, three of which I was attended by paramedics at my home & allowed to stay home when the AF had subsided and the remainder I managed to recover from by using my usual techniques of:- Slow Deep Breathing, the Valsalva Manoeuvre (hold breath & beardown) and splashing cold water over my head & face.
When I was discharged from hospital in 2020 I was given Bisoprolol 2.5mg plus Edoxaban 6omg (blood thinner) which I have taken ever since. However, the Bisoprolol really slowed my resting heart rate such that it seldom exceeded 50bpm-my G.P. then agreed to me reducing the dosage for a while then eventually decided that I should revert back to 2.5mg
per day (breaking tablet in half & taking half in the morning and half at bedtime-I have predominantly awoken with AF in the night-I now suspect that my severely blocked nasal passages cause what I describe as Nocturnal Asphyxia when I wake with a sealed up nose & my tongue stuck to the roof of my totally dry mouth & gasping to breathe!
I have now had a face to face consultation with a cardiologist who in view of my resting heart rate often dropping as low as 44bpm in the night has told me to stop the Bisoprolol altogether and instead he has put me BACK ON FLECAINIDE but 50mg twice daily. My Edoxaban bloodthinner has also been reduced to 30mg due to me losing weight and going well below 60Kilos.
Sorry to go on so long but thought my personal experience with AF would interest you.
I am now waiting for collection from the hospital of a nightime pulse/oxymeter recorder to see if I do have Sleep Apnea tho these days due to stress & worry over further AF attacks I rarely get any sleep and spend many nights either sat upright on the bed or elsewhere indoors. I do hope the Flecainide will help. One final word of caution, despite not being told, I discovered online that YOU SHOULD NOT COME OFF BETABLOCKERS SUDDENLY and should phase them out gradually otherwise this could cause many complications.
I have also had two more echocardiograms and it seems that the leak from my mitral valve is still considered to be mild tho regurgitation from the valve can also be a trigger for AF.
I hope this information will be useful-my final remarks would be-you are not alone there are very many people with AF and modern techniques to help control it have advanced tremendously.
Hello Micron 5, this is really interesting, thank you for taking the time to tell me about it all.I had never heard of AF until I was told I had it. This came about in early February 2018 when I developed pneumonia and spent a few days in hospital. I was 63 at the time. While I was there I was given the news that I had AFib. It was a huge shock but really I had struggled with a fast heartbeat on exertion for years, just didn`t know why.
I eventually saw the cardiologist and then I had a cardioverson which sadly didn`t work. He told me I had probably had AF for a few years and that it often went undetected. Apparently I have long standing persistent AF and so it is with me all the time. My heart never works normally so no attacks for me, just permanently in AFib. I wear a smart watch and try to keep my heartbeat lower than 100.
I take Apixaban 5 mg, one tablet in a morning and another before bed. I also have Bisoprolol 5 mg every morning. My resting heartbeat is usually in the 80s or 90s and moves around, often with no apparent reason. My watch shows the highest my heart has been in a day. Today it`s 126.
I often feel worn out but things could be a lot worse and I just have to take my time walking etc and learn to accept my limitations.
Wishing you all the best, try to live each moment, it`s all any of us have got anyway.
Hi Kathleen, Many thanks for your reply giving info on your experiences with AF, Well, I should really stop boasting!! Yesterday morning at 12.15a,m, I HAD OBVIOUSLY FALLEN ASLEEP as I was awoken by being in A.F. and as per usual I immediately went into stress/panic mode and started my usual techniques of deep breathing, valsalva manoeuvre & cold water on face/head- finally gave in & phoned 999 - paramedics eventually arrived by which time the AF had begun to calm down but all credit to these kind hard working people who did their usual thorough checks inc e.c.g etc etc it was finally decided I COULD REMAIN AT HOME. My experience of AF is that i am always well aware of it happening as it feels like someone is trying to wriggle/punch their way out of my chest and I then start to feel tingly & numb (the latter probably partly caused by my hyperstress ! ) I so well recall that for the 12 yrs that I was on Flecainide I never had a full AF attack tho still getting regular palpitations, bumps & jumps hence the fact that I was trying to feel confident that going back on Flecainide would solve the problem (maybe early days yet PLUS I am now on half the strength dose)
I will conclude by mentioning that I so often experience what I describe as 'Mini Fibs' when it feels like a full blown AF episode is starting but it quickly subsides within seconds or a minute or two- personally I endorse a G.P.'s opinion given some time ago that as I am & always have been such a very stressful person coupled with the Mitral Valve regurgitation it is inevitable that AF will happen PLUS advancing age only serves to exacerbate the situation (now approaching 80yrs old!) The only consolation is that I have so far not been in permanent AF (so far as I am aware!!)
I wish you every success in combatting your personal situation and hope that you will soon find an acceptable solution to get rid of the AF,
Hello Micron, it must have been scary for you, anything that happens in the night feels more scary than in the day as I suppose we can`t always think straight then. I have had panic attacks for many years, long before I discovered I had any heart problems. I fight for breath and it`s like I have whooping cough, difficult to explain but perhaps you know.I don`t get this as often nowadays, perhaps because I sometimes read little books on positive thinking and mindfulness. There are lots of them at The Works, all very inexpensive and often just a few words of positive thinking on each page. I try to be careful what I think and not dwell on the things that upset me. I suppose it`s looking after our mental health, so important and can easily be forgotten.
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