Persistant Afib: Hi I would be... - Atrial Fibrillati...

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Persistant Afib

Swimsyroke profile image
26 Replies

Hi

I would be interested to hear from people who are in persistant afib as to what medication they are on to control it, how is it controlled i.e. heart rate and rhythm. The reason is that having always had paroxysmal afib this has turned into persistant afib in the last 3 weeks. Flecanaide no longer works for me and I have been waiting a year to have a face to face appointment with a cardiologist so there is noone out there for me at the moment.

My only solution is to take a bisopropol if I think my heart rate is too high.

I have now bought a Kardia and my current heart rate is 104 having been 124 earlier today.

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Swimsyroke profile image
Swimsyroke
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26 Replies
BobD profile image
BobDVolunteer

If drugs no longer put you back into NSR then rate control is the new normal. Beta blockers such as bisoprolol are not usually used as pill in pocket but as a maintainance dose.

mav7 profile image
mav7 in reply to BobD

Swimsyroke Note Bob's comments.

Were you told to take bisoprolol as a pill in the pocket ? Not normally used for that. If you were told to take bisoprolol daily it would be wise to begin. But follow instructions.

Your goal is to keep your heart rate under 100 bpm and insure you are taking an anticoagulant. Perhaps if you contact your GP he/she can expedite an appt with a cardiologist and also evaluate your current condition by prescribing a holter monitor.

Swimsyroke profile image
Swimsyroke in reply to mav7

Yes I was advised by letter from a consultant to take bisopropol concomitantly with flecanaide as a PIP and if the atrial fibrillations became more frequent in duration to manage with bisopropol only for permanent atrial fibrillation. No instructions on how much bisopropol to take or what time of day is best. I find now I can manage 1.25 bisopropol but 2.5 makes me feel too zombyish. I have just bought a Kardia which shows my heart rate at between 75 and 95 but if I exercise it can go up to 125 and stay there for hours so am unsure how much exercise to do. I have only had the Kardia a few days and it always says possible atrial fibrillation which is not very helpful.

javo123j profile image
javo123j

I would try and see a doctor over your medication. I have paroxysmal afib but I've had attacks that have lasted for 14 days then I've gone back to sinus rhythm. I cant take Flecanaide but I'm on 2.5 Bisoprolol every day. It can take up to 6 weeks to get fully working

Flutterbird profile image
Flutterbird

When I went into persistent AF in January my heart rate was 160 on six bisoprolol a day. I was previously on Flecainide 50 mg bd and bisoprolol two a day. I was taken off flecainide and put on digoxin. I then started to have episodes of sinus rhythm but unfortunately have gone back into persistent and am now taking digoxin and three bisoprolol a day.

GardeningMK profile image
GardeningMK

hi there, I tried beta blockers and they just slowed me down and effected my life quality. I did cardiac catheter ablation which is not a pleasant procedure and can have complications but it effectively removed the entire 22% of those ectopics which were putting such a burden on my heart, reduced to zero. No more beta blockers fir me! X

Cat04 profile image
Cat04

Went into persistant afib in April (100 - 145 bpm) put on dogoxin and bisoprolol to start with. Bisoprolol then replaced with sotalol. Sotalol then replaced with Tildiem 200 and now Tildiem 300 & digoxin. Still not working, still running erratically & fast & I'm awaiting another appt with cardiologist later this month.

If you ring or email your cardiologist's secretary you could get an earlier appt depending on the severity of your symptoms, or get a gp urgent referal letter to your cardiologist. (Routine appts are a 47 week wait at my hospital.)

Nannysue1 profile image
Nannysue1

I have been in oermanent AF for 2.5yrs now. Was controlled fir 6yrs with amioderone ( yes I know).

Once that stopped being effective, i was taken iff if it and various medication tried. Bisoprolol, Digoxin, made me feel tired, heavy and horrible.

Am currently taking Diltiazem while waiting fir a pace and ablate procedure.

I dont know your circumstances but if you can afford to get a private consultation to an EP, it costs around £200.

Hope you get things sorted .

southkorea profile image
southkorea

Try magnesium Taurate . it works for me . you can buy it on Amazon.

Malhouse profile image
Malhouse in reply to southkorea

hi, can u pls advise how many mg/day of magnesium taurate you take? does it also help you getting deeper sleep? Thanks

kkatz profile image
kkatz in reply to Malhouse

I take Magnesium Taurate .But it doesn't help with sleep.Minefield trying to get the best source as difficult to find just how much magnesium is in the dose.

I use Ethical Nutrition direct and service brilliant.

I think Magnesium Glycinate is the one recommended for a sleep aid.

Malhouse profile image
Malhouse in reply to kkatz

Thanks

in reply to Malhouse

I take magnesium taurate 200mg in morning, 200mg evening. Has kept my ectopics at bay! I came off it for a few days recently as part of my testing to see what things I’ve been doing are actually helping me, and the ectopics came back for a few days in a row for the first time in many months. Then started the magnesium taurate again and they are gone. I know it doesn’t work for everyone, but it is worth a try.

Malhouse profile image
Malhouse in reply to

Thanks

Tudee profile image
Tudee

i have been in Persistent A.F. for 4 yrs now and am so glad that the roller coaster of paroxysmal A.F. Is a thing of the past. I have never been considered for Ablation as I am symptom free. I remain so on Bisoprolol 2.5mg alternating with 1.25 mg alternative days and Apixaban b.d. Heart rate 64 -80 bpm.

MummyLuv profile image
MummyLuv

morning, how you want to ‘manage’ your afib is personal to you I want to share some options with you based on my person experience and research into persistent afib.

- medication that keeps your rate low to help the heart function more effectively and reduce the risk of other problems such as heart failure. Depending on your age and other risk factors you will most likely be on blood thinners to to reduce stroke risk.

- cardioversion, quick procedure to flip you back into NSR, not a long term solution once you are in persistent but your cardiologist may want to do this to see you can get back into NSR. (Not always a true indicator though, I had 4 and couldn’t convert back but I am now in NSR)

- catheter ablation by an EP, as you have only just flipped to persistent you may still have a good chance of this approach working for you. A catheter is thread through a vien in your groin and the areas where electrical pulses misfire ‘ablated’ usually by freezing or heat. The longer you are in persistent the less likely this is to work.

- mini maze surgery by a cardiothorasic surgeon. This is a postcode lottery but if you are in England there are surgeons doing this on the NHS. A keyhole surgical ablation from the outside of the heart. The lesions created are more robust and as a result for persistent afib the success rate of this method is very high. I had this in May having been in persistent 5 years plus and so far NSR.

If you can afford a private consultation it would be worthwhile to then be referred into the NHS for the right procedure. Many with persistent afib decide long term meds are best for them, I wanted off meds especially blood thinners and so wanted to share a little more. Good luck, hope you get to speak to an EP very soon 🤞

Thomas45 profile image
Thomas45 in reply to MummyLuv

I find it very odd that you wanted to come off anticoagulants which are sometimes called blood thinners, although they do not thin the blood. Doing so has increased your chances of having a stroke. Blood can form clots anywhere in the body, not just in the atrial appendage which you have had closed off.

MummyLuv profile image
MummyLuv in reply to Thomas45

hi Thomas, I had a serious brain bleed many years ago which means I am a lucky lady to be here so I was driven to get off blood thinners given my medical history. I would say that even without that I would have chosen to have the left appendage clipped over blood thinners as blood thinners reduce stroke risk by c60% (source dr Sanjay Gupta, EP) and left appendage clip by c90% (research papers). Nothing sadly is 100%.

Buffafly profile image
Buffafly

Has your GP not given you any advice?

If you find that your HR is frequently that high you can go to A&E as you don’t have a plan for your present situation. I went to A&E after a week in AF with rates up to 155. I was given digoxin which didn’t work and they were going to keep me in to try to get me back to sinus (I wasn’t taking an anti arrhythmic drug) but as soon as I got to the ward in the evening my heart reverted. You’ve left it rather a long time but that’s what I would do as you’ve got the Kardia recordings. You’ll probably be told to take Bisoprolol regularly at the very least. You aren’t expected to wait for an appointment if you need urgent help which you do because your AF could become permanent.

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Im 61 and I have been in permanent afib for about 5 years now. I take 2.5 mg bisopolol daily and my resting heart rate is between 85 and 95. I manage ok and often forget I even have it. If I get a spell of my heart beating more rapidly which is very occasionally I take another 2 5mg as a pill in the pocket as such on the advice of my cardio works well for me.

SeanJax profile image
SeanJax

pay for a private consultation with an EP. It is money worth spending. You will go in heart failure soon with such high resting heart rate . And take anticoagulants too.

kkatz profile image
kkatz in reply to SeanJax

That is a very scary reply and I am not sure completely true or evidence based.

djmnet profile image
djmnet

I've been persistent for about 3 years now and I much prefer it over paroxysmal. I don't tolerate beta blockers very well so I ended up with diltiazem, a calcium channel blocker (180 mg) daily, along with my anticoagulant, and it's been very easy. I no longer even know that I'm in afib and feel completely normal. My resting heart rate ranges from 70-85 most times.

enviro1 profile image
enviro1

Sorry to hear that. I am in persistent afib for 12 months now. I take a quarter of a 80mg tab of sotalol twice a day, It keeps my heart rate around 50 to 70 bpm, unless I exercise of course and I feel great generally. Prefer to be off drugs but still looking for that solution.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Directly when diagnosed with strike and AF my day H/R on Metroprolol was 186 avge. 2 years later with excessive sweating and stopping any exertion.

Changed to Bisoprolol only but still H/R day 156. with H/R night stayed at 47.

9 mths later with advice with a Locum who understood AF as she had had it advised me to see a private cardiac specialist and named him.

Immediately he was interested put me on CCB a calcium channel blocker. 1/2 dose given with Bisoprolol reduced am and pm. I dropped 105 H/R taking in morning.

It was immediately over 4 days it was twigged between advice from Healthline NZ (Sunday) and Nurse at NZ Heart Foundation.

I had Rapid, Persistent, Irregular AF. I have now had it for 3 years at least. The diagnosis of thyroid cancer = papillary removed thyroid and 12 lymph nodes. Found in right lobe prodominantly, wee bit in left and lymph nodes examined out two nodes were affected.

I now take 120mg am Diltiazem and 2.5 Bisoprolol pm. A CCB am and BB night.

I could not go lower at night as 47 H/R avge.

My BP is now 123/72. 77-88 H/R day. 47 H/R night.

my energy is finally returning. TSH 2.0 steady level. Operation on March 2 removed the inflammation from Johnson & Johnson Mesh in TVT Kit 2003.

Inflammation can cause AF.

Be patient and continue to ? if you need to change off a drug and I found drs dont dare change you so specialist definitely.

Go cautiously. We are all different with different causes. Always document events.

Rapid H/R was on exertion with profound sweating and I had to stop what I was doing.

Rapid you need to be on anti-coagulant. I am on PRADAXA 110mg x twice.

A month ago the national H/Spec wrote I have a Systolic Soft H/Murmur

cheri JOY. 73. (NZ)

kkatz profile image
kkatz

Hope you don't mind a long story.Now been in Persistent AF for 18 months.I understand the worry re excercise . Essential to me.You dont say what excercise you have been doing to but your hr up to 125? It is quite an acceptable rate for excercise. It is the not coming down for hours which is not so good.

I had to build up my excercise..Just walks on a variable circuit with places to rest.I believe taking the excercise helps create tolerance to it and within a month I found it would slow down within 10 mins.I am one of the worst for worrying about my heart rate.I would expect it to go up to 125 on walks ,at excercise classes & bowling but if I slow down it goes down .

I am now worried as my resting hr is sometimes 50 -60 and I feel worse than at 135.

I think this is due to pushing myself too hard.

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