I have a very specific question for a very specific group of people in this wonderful ‘band of brothers & sisters’. The group I mean is: everyone with rate- controlled PERMANENT AF. I would love to read your real-life experience with this chronic condiction. How about exercise and sports? How about advantages and disadvantages? How about ways to make life most enjoyable? How about medication or lifestyle hints to help reach that goal?
I would really appreciate it if ONLY friends with permanent, rate-controlled AF would respond. Thanks in advance for keeping that in mind.
All the best!
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Abbyroza
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I have experienced permanent afib for about 2.5 years which is controlled by .75mg Metoprolol (avg HR low 80's) and Eliquis. 2 cardioversions and Sotalol were not successful in maintaining NSR.
My situation is more complex because I also have moderate aortic stenosis which prevents the use of more complex and possible succesful antiarrthymic drugs. I am 78 and have chosen not to have an ablation/maze procedure because the success rate would be low especially with aortic stenosis. And, I am fairly satisfied with my qualify of life.
My ejection fraction is in the 60's and have mild enlargement of the atrium, common with afib. Would emphasize the importance of echocardiograms on an annual basis.
As a former runner, the only exercise I do is short walks and stretching exercises. My choice is to keep my heart rate below 100 at all times.
Advantages/Disadvantages are subjective and a personal choice. I certainly don't have my former energy and do become fatigued (not drastically) but I have accepted it as a fact of quality of life. Mental approach is key whether paroxsymal or permanent afib.
It is important each person research and consult with their medical professionals on a chosen path.
Yes at all times, just personal preference. Not saying there is harm in above 100, but when my rate has gone above 100 I find it takes time to return to normal. At least compared to pre afib times. Don't feel that is good for afib.
To be honest I'm not sure. I believe that it has something to do with my AF being caused by a virus infection and the infection resolved over time. I think the concoction of medication also helped, I also had Amiodorone on a couple of occasions.I was also only 40 when diagnosed so had "youth" on my side so to speak. I think I was about 44 when they said no heart failure
I have changed my lifestyle, my job, no stress I don't drink or smoke and I exercise where I can
To be honest my energy is ok. Some days I have a tired day but not often. I can keep up with everyone at a Zumba classI just get on with life and keep taking the tablets. They're never going to take me off them so what else can you do?
You will find that in time reducing dosages will over ride the long list.
The 24hr Heart Monitor with seeing what happens when 1 is reduced is a great hurdle.
When the Hospital Cardiac Specialist discharged me from Outpatients list I said which pill shall I leave out is my heart rate goes too low.....? He said Bisoprolol.
He doesn't know or hasn't read that I have "Essential Tremor". Its a glass of red wine or BB that will assist my tremor in the left hand!
So next time you are with your Specialist do ask him which is the first pill you should drop. So you are one step ahead.
I no longer see a specialist and haven't for many years and won't be dropping any of the pills.They've kept me going for this long and I trust that they are going a great job!
I went down to Auckland Hospital to the specialist specialising with Essential Tremor and Parkinsons.
He gave me a pencil and paper. He drew a shell. I had to stand up pencil and not rest on table/paper. I had to draw the shape of the shell inside his outline. You know the shell curves out and out.
Left tremored and did not do well. Right was great.
Then I had to walk the line with one foot in front of other,. I passed.
Carrying a full or empty cup of tea mine rattles or becomes percerious. Its bad after finishing the battery-driven mower.
I thought it could have been due to a previous major surgery on my inner rotator cuff of my left shoulder. Last year I had my right shoulder done and that remains normal movement. 2 holes this time.
I am a 72 year old female diagnosed with permanent AF in April followed by ECHO showing mild left ventricular systolic dysfunction, mild tricuspid valve regurgitation and mild mitral valve regurgitation. Ejection fraction 55%. I was and still am virtually asymptomatic. I am on bisoprolol, apixaban and dapagliflozin (I was on statin but chose to stop after an abnormal liver test). Exercise wise I am currently attending a Cardiac Rehab programme and enjoying the exercise routine as well as following on YouTube and most days walk, even if just 40 minutes.
I know I am lucky in that I don't feel any different than I did before my diagnosis and that I have received great care and support from my GP and HF nurse.
I do keep an eye on my blood pressure (it can get low) and my pulse rate, but the 2.5 bisoprol seems to be managing that well. Good luck on your journey!
Nice to read that your quality of life has not suffered after being diagnosed. I find that when I have longer episodes of AF, it becomes almost completely asymptomatic, whereas shorter ones ones are more disturbing for my daily activities. I probably will have an even lower burden should my AF become permanent. Thanks for sharing your experience and all the best!
I was diagnosed about 15y ago with perm. AF. I have never experienced the trauma of paroxysmal AF. I'm 61 with no other issues at the moment, trying to fight off high blood pressure at the minute.I was on clopidigrel, and bisoprolol at the start but was advised to come off it all, consequently I am not on any medication at the moment. When I get to 65 however I will happily trot along to get some anti coagulation.
My resting heart rate is about 90, but for sure my rhythm is all over the place, it varies from the tango to the waltz,never does a slow march
I walk daily (see comment about blood pressure) and after a year of ankle pain I've picked up the CouchTo5k again aiming to do my first parkrun since last October.
Thanks for your positive input. Even if a slow waltz in out of our boundaries, as long as we can still let life rock & roll, we’re good to go. My resting heart rate is in the 70-ies, but from time to time a frog war seems to break loose in my chest. As long as I can keep that under control, I’m quite confident I can live happily with AF, even the permanent kind.
I've had afib for 20+ years 3 failed ablations and anti-arrhythmics didn't work for me.
I've been on rate control diltiazam,metoprolol, and statins also warfarin
I have taken magnesium glycinate for many years but nothing stopped ne going into permanent atrial fibrillation several years ago and then a year or so ago I developed heart failure due to afib.
I'm told it's not reversible so interesting that another poster said theirs had gone away.
I'm 58 and since afib became permanent it has been so much easier as symptoms are few and far between I do everything I want to.
I have an optimistic outlook on life I've tried everything on offer and there are so many people worse off.
I'd say don't dwell on it ,fill your days with reasons to get up for and just live your best life with the restrictions permanent afib brings with it.
I have had paroxysmal AFIB since 2016, and my AF burden was below 10%. In Feb of this year, it became permanent, and no medication has been able to put me back in sinus rhythm. I must say that my quality of life has been very poor. My main symptoms are fatigue, shortness of breath, and weakness. Climbing the stairs is especially difficult at times. Also walking from parking lot to buildings has been difficult. Legs are very weak. What is very surprising to me is that lately, i have several days per week that i don't appear to have symptoms and life appears normal. Has anyone experienced this? I'm still in AFIB 100% of the time, so i don't understand this at all.
After much consideration and search of the literature, i have decided to have an AV node ablation, scheduled for Nov 20. I think that is the best option for me. All others don't seem appropriate for me due to my issues. My latest ECHO results showed no congestive heart failure. Ventricles are good. But both atria are mildly enlarged. I can not take blood thinners due to craniotomy but i have a Watchman and pacemaker. My EP does not advise doing a regular ablation due to those devices.
Please let me know if anyone is having the same symptoms and how you're handling them
Sorry to hear about your muscle weakness. One of my best friends, a retired cardiologist, insists that I do daily exercises focused on muscle maintenance and development. Squats for my leg muscles and weight lifting for my upper body. Perhaps you could give this a try in order to overcome the leg weakness that bothers you when walking even short distances? On the positive side, the fact that some of the time you feel ‘normal’ for several days a week probably means that your system is adapting to the condition and that your quality of life will improve even more in the future. I would never consider an ablation, and neither would my friend cardiologist, especially if there is no heart failure. All the best, and success with the legs training. Start slowly and lightly!
I had an ablation several years ago, and it was successful. When i got the watchman, that's when my AFIB came back. I'm scheduled for an AV ablation where the AV node is ablated and a couple more wires are implanted and my heart will be controlled by my pacemaker.My dr advises against a regular ablation due to the risk of heating up the metal in the Watchman and causing disastrous results.
I am 78 years old and my afib became persistent 3 years ago and is now permanent. I play golf, do yoga, gardening cycling and canoeing though not for long and if I feel my heart rate is going too high or I get a bit breathless I just stop and have a rest then carry on. I have a single lead Kardia and that is all so I don't obsess about my condition but just get on with it. I take Edoxaban and Bisopropol and feel pretty fit for my age. I don't let the afib dictate to me.
Fantastic! My Afib is still paroxysmal and when I am in the middle of an episode, I experiment with my static bike and my fitness machine to check what I can still do or not. Turns out I can perform at approximately 85 % of my sinus-regimen. That will do for me. Glad to hear that when the condition should eventually become permanent, exercising and being active is still possible and even enjoyable. Keep up the good spirit! All the best, Luc
I have been in constant AF since Oct 2022, before that I was in persistent AF that could be converted only by a DC cardioversion since 2016 I have had 3 cardioversions which is all the NHS will do. Rhythm control using Flecainide has been withdrawn for a year now. My HR is around 100 to 110 resting and the AF has caused serious enlarged left and right atrial and damage to both mitral and tricuspid valves for which I hope to have surgery which is scheduled for Tuesday. My ejection fraction is just over 20%.My actual quality of life is zilch, I can walk about 20 yards and need to sleep about 16 hours a day just to function at all. I'm also on 8 different medications.
Its a good job I'm actually a very positive person. But I do get a bit fed up with people blithely saying AF never killed anyone..... because it seems to be trying hard with me!!
Care on meds under the initial diagnosis seems to be MOST IMPORTANT.
Our base hospital after I complained blatently told me that EVERYONE who has had a STROKE gets Metoprolol . Dr turned a deaf ear when I said NO - it will make me breathless. It did and 24hr Heart Monitor measured 186 avg - no exertion couldn't with pauses at night on 47avg bpm NIGHT.
No follow up after STROKE embolic type, AF rapid and persistent and on Day 4 Thyroid Cancer - papillary type was diagnosed.
Argument - Dr on Stroke Ward said no op until 6 mths passed. My surgeon and Anaesthetist said a.s.a.p. Thyroidectomy was done at 4 mths with 12 lymphs removed 2 infected and right lobe lymph bed dissected.
Now recalled as 3 areas 2 lymphs and thymus calcified. The. 6 mthly repeat is next Wed.
We in NZ have "Disability Hospital Complaint" but its only a "regret" talk and not written etc. In NZ with ACC we cannot sue our Drs, Specialists, Nurses or Staff.
I am marking time before I tell my story.
Now in hospitals BB or CCB for rapid H.Rate should be tried.
My stroke was in 2019 and I have fought the Endocrinologist "all the way". A Dr in 2008 did not raise the unsuitability of Metoprolol in my notes!
I do hope the surgery helps you. Have they not given you any medication at all to control your symptoms? I can well imagine that a resting heart rate of 100 -110 is making you feel drained. When I used to have rare bouts of paroxysmal AF I would feel awful & I used to wonder how anyone could cope with that 24/7. It sounds like this is essentially what you’re experiencing so I really feel for you.
I'm currently on 8 medications include digoxin, abixaban, diltiazem, Furosemide, spironolactone, Sacubitril, Valsartan and Dapagliflozin. Previously I've been on bisoprolol, ramapril, lisiniprol and various other medications. My heart rate barely drops at night. I also have bigemeny much of the time, plus constant flutter from my right atrium. Hence I'm hoping that the surgery Tuesday will work.
I'm on 8 different medications. Procedure successful for leaking valve but no effect on AF which is permanent, very symptomatic. Hopefully ejection fraction is now more than my 20%
So sorry to hear about your predicament. I presume a resting heart rate of 100 and more is indeed detrimental in some cases. Was there no way to get it down? Bisoprolol does wonders for me in that aspect. This morning, during a full- blown episode of AF, my resting HR averaged 75.
There are ways to improve your EF, so I’d press your cardiologist to concentrate on that in order to improve your quality of life again. On the positive side: my dear late mother had AF and lived to be 94 with the condition. Keep up the good spirit, all the best!
For your info BBs could not control my rapid heart rate and persistent.
For some BBs only work more on BP like it does me. But 186 and 156 bpm with first Metoprolol, them Bisoprolol. But along introduced to CCB Diliazem dropped to 51 in 2 hours.
So there you are.
The new regime in A&E or stroke for rapid H/R is to try 1 or other first - Metoprolol OR Diltiazem.
Thank you for sharing. Bisoprolol works fine for me -HR at rest averages 75 when in AF- but in the future that might change, so I’ll certainly keep the Diltiazem in mind!
Bisoprolol had been tried, varying between 10mg (I fell asleep walking up the stairs) and as little as 2.5mg (I fell asleep everytime I sat down), ACE inhibitors make me cough constantly.Hence going into hospital a day early so I can be on a drip overnight, probably of Amiodarone to slow it right down before the operation. Then I'm going to be on a heart bypass machine for around 5 hours apparently, during the operation.
This is the result of a consultant cardiologist who wanted to follow the medication only route for 2 years. Now another cardiologist in a neighbouring Health Board is having to intervene.
The cardio-thoracic surgeon I saw in March, ( in a third Health Board area) said that without surgery I would probably only have 6 months, I'm now into month number 8 and just about hanging on.
Hoping and praying they manage to find me a bed tomorrow.
I sincerely hope they manage to help you! I found that Sotalol is useless when AF is vagally mediated. In that case Disopyramide is more suited. And Flecainide, but in your case that is probably contra-indicated.
I am in the age range as you. 75 years. But female.
Finally heart rate control after 2 years 3 months and bringing in a private heart specialist.
It was not OK to be left on Metoprolol 186bpm avg couldn't exert and 24hr heart monitor caught pauses at night. I was breathless on any exertness.
Changed ny hospital heart specialist to Bisoprolol but increased to 10mg 156 bom avg not controlled. No breathless and no pauses but sweating uncontrollable and not controlled.
That's when I demanded someone who cared.
Damage yes a severely dilated Left Atrium.
Started in Sept 2019 when undiagnosed thyroid cancer papillary developed into AF which gave me a Embolic Stroke. ( A rogue blood clot)
The private H/S was interested. He introduced CCB Diltiazem 180mg 1/2 dose but with Biso & Diltiazem in 2 hours with 5mg Biso.
As I started in the weekend, I rung the NZ Healthline and spoke to Dr. Who asked me to reduce Biso further.
The NZ Heart Foundation Nurse who had worked under my private Spec. Helped me further. rang Dr and him to change Diltiazem down to 120mg CD, take mornings and Bisoprolol 2.5mg take at Night.
My normal H/Rate at is low @ 47avg bpm Night.
Combination:
My H/Rate day is 60s but climbs towards late afternoon but still under 100 - the control level.
BP 110-140. Systolic/. 69-79. Diastolic. Was Systolic @ 180. Diastolic 90.
We are trying to figure out why I get tired on exertion quickly and its not unusual to come home and sleep 1-3 hours and again from 12 midnight.
Is it age, is it Beta Blocker Bisoprolol, or is it dilated Atrium and AF?
I will try down to 1.25 Biso and see what that brings. I couldn't earlier - about 2 years ago.
Persistent is also demonstrated by symptoms which are cumbersome or none like me - no to pain, flutters or palpatations.
Only the tiredness and have to stop my walking. Then I say I want to get further to my destination or give up. It feels like a blank on energy. My B12 is kept at 700-900 as I have deficiency. Chemist ?s Co Q10. But because I am on Pradaxa I can't take more.
I also was called back at my yearly cancer check. There are 2 lymphs and 1 Thymus calcified and another 6mthly CT Scan is scheduled for Wednesday.
It is frustrating the energy bit. I started to play table tennis and apart from picking up ping pong balls and clear my head, I cope.
I hope this helps as one on the forum has persistent and rapid h.Rate controlled.
cheri JOY. 75. (NZ)
By the way @ 2 years 3 months and ECHO showing dilation .. no ablation, cardioversion or anti-arrhynia meds but Diltiazem acts like an anti-arr....
Thanks for sharing your experience. The tiredness must be very limiting. Perhaps D-ribose might help. It is a precursor of ATP, a molecule that assists in cell production, and known to strengthen the heart. I take 15 grams of it every day and it helps when I exercise. In combination with Ubiquinol and L-Carnitin it reduces the effect of AF.
The good thing is that finally your HR is better under control.
You could give the mentioned supplements try if your GP agrees?
I was abe to have the two last operations for Removal of J&J Mesh in the TVT Kit and last year finally had my right shoulder done.
I looked up your supplement.
It is also found in Chicken, sardines, yoghurt, cheese, milk etc. I have all of those. I love milk and I buy Organic Milk A which is better for you.
My Dad has Diabetis 1. I keep away from SUGAR.
It is a sugar. And is hard on your kidneys.
Says take it fir 15 weeks only.
Reading up on my regime of meds. It could be because I am taking a CCB and BB although both are separated 12 hours which is what the nurse at NZ Heart Foundation asked me to do.
That’s what I expected. Paroxysmal is a constant stress factor because of the uncertainty. I start to feel better lately during an episode, because I’ve noticed that I become less symptomatic and have to check my pulse to know if I’m in sinus or AF. I understand you completely! Not being on the look-out for possible triggers must be a blessing, indeed.
Absolutely! I didn’t even have many episodes when I was paroxysmal but I started to live my life around it. Can’t eat this, can’t drink that, no I can’t come out to dinner, it’s too late, have I drunk enough water, have I taken my supplements…..frankly I started to bore myself. All whilst watching both my parents with AF carry on as if it was no big deal. Got an episode in early 2021 when the country was at the end of yet another lockdown & just didn’t take my fleccainide. Haven’t looked back.
Sounds SO familiar. 2 friends of mine are completely asymptomatic. I discovered one of them had AF when I lent him my Apple Watch. He never realized his heart was out of rhythm! That was an eye opener, and since then I try to ignore all the things you just summed up that paroxysmals do - or don’t. It leads to unnerving compulsive behaviour. Stopped taking Flecainide too, and have had less episodes than before. But I stopped worrying of paroxysmal developing into persistent and eventually permanent, because I feel that the latter makes life easier, and not the other way round. Thanks for confirming this feeling. All the best!
not exactly 'rate-controlled', but have had AFib for decades - at first paroxysmal, age late 50s, I just rested during bouts - didn't hurt or anything, then this stopped but I noted my resting HR went down from 60 to 40 and became very erratic - after much trying to persuade medics I had AFib, a nurse finally took it seriously, sent me to the EP consultant who said yes, persistent AFib (doesn't like 'permanent') plus flutter at night. Because my quality of life is just fine, I didn't accept his kind offer of ablation and rate control is not usually used to raise HR - I did and do take anti-coag (apixaban), but that's all - (over the years I have tried Mg and some other OTC suggestions - no effect) - he also predicted I'd be on a pacemaker soon, that was 10 years ago. Still continuous slow, v erratic pulse, but good ejection fraction. Max pulse during exercise about 130.
ps - age 76 now, still do gym, masters sprint swimming and some field athletics, interestingly my pulse seems less erratic during and for a while after exercise. I may pop off tomorrow, but life is fine here (tho' I do worry about climate, Gaza, Ukraine, ----).
the thing with AFib more than some other conditions - we're all so different
Quite extra-ordinary, such a low resting heart rate. A good thing, as the mostly higher heart rates in AF otherwise limit exercising somewhat. And no need for betablockers! Enjoy the gym and athletics!
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