has anyone else had constant af? Mines classed as persistant now, moving from paroxysmal. I only had 3 major incidents in 6 yrs, now it doesn’t stop at all. Sometimes worse than others.
I read people saying they have had long episodes but is there anyone else out there where it doesn’t stop at all? I am so tired, I can’t do anything.
Thanks
Plenty of people are permanent and provided rate is well controlled and they are anticoagaulated that live pretty normal lives. Many don't even know that they have it.
What drugs are you on?
I’ve tried various cocktails but non work. At mo I’m on Dilitazem and bisoprolol. + apixaban. Sometimes it’s controlled and I don’t notice it too much, other times it goes wild. My breathing is really affected, fine when I’m sat still, shocking when I move even a few steps and forget about going uphill.!!! I also have atrial and mitral stenosis( mild to moderate) not bad enough to have surgery. I’m now waiting for N ablate and pace. I just wondered if anyone has symptoms like mine, I know everyone is different but sometimes it helps to hear how others deal with it.
if you asked me last week I would say no mine is not persistent this week I have checked 3 days in a row and it’s there I feel worn out any slight incline I avoid
I have been in persistent for over five weeks now. In some ways I’m not too bad (rate controlled and on anticoagulants) but very tired - and my legs don’t want to carry me up hills or stairs! Getting an ablation quite soon, scary thought but I would like some energy back.
Yes, there are a lot of us on this forum with continuous AF, me being one of them. To be honest I find it easier to cope with than paroxysmal. Are you stuck at a certain rate or are your beats per minute a lot higher than normal. I'm stuck between 60-110, my heart rate has gone higher since I changed to just Bisoprolol and stopped taking Flecainide and low dose Metoprolol. What medication are you taking?
Jean
no- my HR is all over the place. last 6 months 38-168 variable. I feel rubbish when its low and rubbish when its high, both affect my breathing . I'm actually on ditiazem and Bisopropol along with Apixaban, my cardiologist has tried my on various cocktails and this is the best so far but really not very good, its a matter of managing it the best I can.
You poor thing that doesn't sound good at all.
I'm on 2.5mg Bisoprolol twice daily and Warfarin. I used to take 100mg Flecainide twice daily alongside 12.5mg of Metoprolol. It's a long time since I've felt as well as I am right now. Today I mowed my back lawn with one 10 min break, normally I need about 5 breaks. Then I cleaned windows. I feel like superwoman - just hope it lasts.
Wish I could think of something to help make you feel better, but not easy with your heart rate being both high and low. I guess a pacemaker to make sure rate doesn't go too low and then drugs to stop it going high. What pills were you taking when you had your 3 major incidents? It sounds as though that regime suited you better.
Jean
I was only on 1.25 bisoprolol and apixaban . I always went back into sinus usually in 24 hrs with higher dose of bisoprolol given in a&e. Hence it was a shock this year to be in hospital 6 days then cardio version with 7.5 mg of bis to go home with. It only lasted 6 weeks then back in a& r where I was just told to get on with it. Felt like I was falling off a cliff with no way back. So upsetting as I hadn’t encountered anything like it. I then had third terrible episode- I wasn’t going to go in to a&e but my daughter rang 999. Completely different experience! Same hosp. Diff consultant.
Was there no mention of an ablation?
yes but was told it only had 40-50% chance of working so we decided it wasn’t worth it+ they would only try it once if at all
where in the UK are you? I wonder if surgical ablation/mini maze is an option for you
I’m down for pace and ablate. Cons didn’t think ablation would work. Having paced fitted next Weds
HI
I was told by the NZ Heart Foundation TO SEPARATE THE DILTIAZEM say am and Bisoprolol at pm.
It totally works for me cause only 47 H/R night.
cheers JOY 73. (NZ)
thanks, I’ll try that.
Yes now in persistent for 20 months.Not the intensity of Paroxsysmal but quality of life affected.usually not high HR.
I’ve had persistent AF since 2017. Two cardioversions but each time I only went into normal sinus rhythm for 4 days. Now I have it all the time and I don’t give it a thought. But I guess it helps that I don’t have any symptoms. The Bisoprolol used to make me feel very tired especially in the evenings but that’s been reduced to 5 mg per day. I keep active by cycling and jogging. I’m on Rivaroxaban as well of course and Ramipril to improve heart pumping which I feel has helped me a lot. The consultant once told me I was one of the lucky ones as I showed no symptoms. Hoping this will continue to be the case as I get older, (61 years old now), but I’m definitely not taking it for granted. Hope my story helps.
Hi
Join the club of feeling no heart symptoms Gunnersawus!
But I have put it down to a 'bad' ribcage and my heart has been pushed LEFT to accommodate it! The scan shows I have an enlarged heart L chamber so NO ABLATION.
Being in CONTROL of H/R means no more excessive sseating and much more fatigue.
cheers JOY. 73. (NZ)
yes I was diagnosed 2016 and only had 3 episodes in 6 yrs with no symptoms whatsoever in between till this year. Now I have no quality of life can only walk about 10 paces without stopping but I still do it as sitting doing nothing would be fatal. I have fast and slow HR.
I've been in persistent since August and am coping well with 2.5mg Bsopropol taken with breakfast. I do notice my tight chest and get breathless off and on when exercising but generally speaking I feel fine and the anxiety of what I eat or do or sneeze etc bringing on the afib has gone. That for me is a big plus point. I still haven't seen a cardio but my GP wants to put me on diliatazem as well as the bisopropol. I am not sure of this combination, the side effects and foods etc you should avoid if you take diliatazem are more than bisopropol. I would welcome peoples comments about this combination. But generally you could be better off, as some of us are, in persistent afib.
I should also mention I take 30mg edoxaban (the lower dose as I am a little underweight)
Hi
Please read my post.
As Diltiazem made the difference betweenUNCONTROLLED and CONTROLLED.
Like the next post I need to stop walking but not through breathless but Dr says to wait for the body to have more oxygem around the body.
cheri JOY. 73. (NZ)
Thanks for your post about diliatazem.
I read that you should not drink caffeine with this drug or take vitamin D3 or even a multivitamin which I take.
I do take 2500 vitamin D3 every day and enjoy my one cup of Costa flat white every day.
I also am in stage 2 kidney disease.
I take 2.5mg of bisopropol first thing.
So these seem to contraindicate taking diliatazem as well as bisopropol and I'm wondering if I'm better off just trying an increase the dose of bisopropol.
I'm not asking you to advise me but just to give your opinion as I am unlikely to get to see a cardiologist now until next year.
Hi
Bisoprolol is a BB Beta Blocker. It does not do a drastic drop in H/R like Diltiazem did 105 H/R within 2 hours so it was drppped from 180mg (1/2) dose to 120mg.
Also separated by 12 hours with Bisoprolol at night which doesn't reduce Night H/R further than my usual 47 average.
A cup of coffee I do have but at least 1 hour after Diltiazem intake. But I just have 1 heaped tspn INDULGENCE DRY ROAST and with milk.
Didn't know about D supplements but I have sunshine out on my deck early morning. I put mushrooms out in sun and aopparently they absorb Vit D sunshine.
Have your cupps coffee earlier or later by an hour. Enjoy.
cheri jOY
Thanks for that information. Very helpful.
Hi
Looking up coffee with CCBs. NOT A PROBLEM.
Hawthorne is a NO NO cause it will not allow CCB to woek bringing
down H/R or take it too low. Also Magnesium can cause the heart to slow down too much.
Try looking it up on Google.
cheri JOY
Hi
I was diagnosed with AF almost 2 yrs ago! I’m in for a Cardio version mid Dec after persistent AF all that time. I’ve tried to keep happy and still have gone out for walks. Not so long as I used to do , but a mile… Mile and a half is still good exercise and you get to see the great outdoors which always gives me a lift. Have to stop a lot for a breather but so what, I still get out. I’m not having it absolutely rule my life. I go to acupuncture regularly with only good results. I’m on bisoprolol, eliquis plus three other meds. I’m 76 nearly so don’t give up! Things seem to happen slowly with the NHS but once you get seen by the cardiologist things seem to happen much quicker then. Good luck.
Hi
Mine was diagnosed with a Embolic Stroke in September 2019. Still in hospital on day 4 a had a Carotid Arteries scan. This sowed a shadow on my Thyroid. 4 months later I had the Thyroid out with 12 lymph nodes on right side. Papillary Cancer was diagnosed. 2 Lymph Nodes were affected. Lucky me.
I was diagnosed with Rapid, Persistent AF H.R.
Since December 2021 I have been CONTROLLED with a CCB Diliazem 120mg am and 1.25mg pm.
It took a private cardiac specialist who was interested to look after me. At rest I was in the 120s H/R whilst he examined me.
The surgeon would have been unable to opersate last March 2022 to remove the TVT Mesh Johnson & Johnson which was causing internal damage.
I had 3 monitors 24hr last year with the changes in meds Metroprolol, Bisoprolol and the last combination although I was taking 2.5mg pm then.
Step 1
To be controlled under 100 H/R.
I have always had 47H/R avge at noight regardless!
But now controlled
Day BP123/70. 77-88 H/R
Night 47 H/R
It is so important to be CONTROLLED in persistent. You can be High/Low H/R
and AF purely means that you have IRREGULARITY.
It was the CCB Calcium Channel Blocker which changed my life. No longer - excessively sweating and fatigue unmanageable.
Take care, JOY 73 (NZ)
thank you so much for your reply
Thanks for your post JOY2THEWORLD and I'm sorry for what you have been through. Could you explain what CONTROLLED means please. Also are you on Bisopropol as well as Dilatazem if so how much?
Hi
Yes I replied to another.
UNCONTROLLED is a RAPID PERSISTENT AF H/R of over 100 at rest. The monitor showed H/R of 120s at rest with avge
186 on Metroprolol only
156 on Bisoprolol only. Even 10mg - 12mg didnt move it under 100.
Over 100 H/R at rest an Anaesthetist would not operate on you.
Diltiazem 180 (1/2 dose) too much and brought me down 105 in 2 hours!
Settled with 120mg Diltiazem am and 1.25 now pm but started new regime on 2.5 Bisoprolol at night.
One is a CCB Callcium Channel Blocker Diltiazem
One is a Beta Blocker Bisoprolo
They help with BP and Rhythmn/. Bisoprolol doesn't interfere with breathing as Metroprolol does!
I've been on the change of meds since December last year. CONTROLLED and underwent an operation last March.
See a private/public cardiac specialist and be under his watch. CCBs certainly need careful supervision by self. A BP monitor is best with BP and H/R.
Omicron or I prefer Microlife smaller are best and bought from Chemist and checked ny your clinic.
CONTROLLED is important. I was 2 years 3 mthe UNCONTROLLED and felt NO QUALITY OF LIFE.
Night H?R is usually LOWER than DAY.
I do hope this helps.
cheri JOY
Yes. Thanks that helps a lot.
Detox with EDTA, NAC, and Zeolite and drink water all day long. It's working for me. GL!!!
thanks I do keep very well hydrated as I do notice a difference if I don’t. Thx for the reply
in permanent afib since early 2020.
So am I for the last 6 months plus . Do you have symptoms ?
yes, v breathless and fatigued, only walk 10 paces without stopping and that’s on the flat. I’m having pacemaker fitted next week and set for a an ablation after that
well it felt very different to 'normal' thankfully the gp gave me a ecg, and was pleased he caught it in the act so to speak. It didn't feel too bad on the drugs, but the hard stop, when walking was a surprise, you're going fine and then body says, 'nope, that's it stop now...' Had a top volts cardioversion, sadly no change. things were going well till I got covid this April, the aftermath was not good, breathless, sleepess, felt awful for months, them recently started gaing weight, so quickly. Legs swelled, abdomen, put on 3 stone in less than 3 weeks, started leaking water from my legs, couldn walk further than 10 yards. GP put me on Furosemide, lost 5 stone in less than a month, feel almost like a 'normal' person now... so glad they caught it.
hi
in sept 2029 with AF I was diagnosed with RAPID PERSISTENT H/R with A.F.
It was stroke caused by A.F and then 4 days in hospital diagnosed Thyroid Cancer. Papillary. The stroke at 2am woke me up with a bad headache. I rarely get them.
I have a 'bad' ribcage so I don't feel the heart going.
CONTROLLED finally with 120 Diltiazem CCB Calcium Channel Blocker AM
and 2.5mg Bisoprolol BB Beta Blocker PM. These 2 types CCB and BB need to be
separated.
NOW 123 - 135/70. 77 H/R avg DAY. 47H/R stays throughout PM
I was 187 avge Day on Metroprolol with 2 pauses
I was 156 avge Day on Bisoprolol no pauses
So you can see that the latest meds are best for me.
Take care. I can't have an ablation as one chamber enlarged.
cheers JOY
AFib much worse since ablation on July 6th
Feeling frightened 
My first AFib episode since diagnosis 
All that is fast with the heart in not necessarily afib 
Do ablations work for persistant AFib? 
