Afib Medication: Permanent Afib was... - Atrial Fibrillati...

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Afib Medication

Jedburgh profile image
38 Replies

Permanent Afib was diagnosed years ago. No symptoms until heart rate is checked. Doctor prescribed

Amiodarone - bad side effects stopped using

Bisoprolol - bad side effects stopped using

The doctor said to stop using and if I wanted to go med-free and I have no symptoms go for it. Which I have since.

I am on a list for a consultant to assess. Could be a while!

While waiting, has anyone else had the same issues with the side effects above and if they found a med that works well? Any advice is welcome.

Rosie

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Jedburgh profile image
Jedburgh
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38 Replies
mjames1 profile image
mjames1

So if I understand you, you've been in atrial fibrillation continuously for a couple of years, but never had any symptoms, even without medications?

If this is the case -- and I'm assuming your rate is low/controlled without drugs -- I don't understand why you were prescribed either amiodarone or bisoprolol.

In cases of asymptomatic afib with a normal heart rate, often the best treatment is no treatment, with the exception of blood thinners, if warranted by your risk profile.

This is assuming your heart remains structurally sound in afib, which requires periodic monitoring, and imaging by a good cardiologist.

Jim

Jedburgh profile image
Jedburgh in reply to mjames1

Thanks for your reply. Went into the Hospital for an unrelated thing. To my surprise, I was told I had Afib and it was all explained. Sent me away with the Amidaorone and . Apixaban for blood pressure. Told to go see my GP. Ankles swelling (couldn't get shoes on) and fatigue. So stopped that. Prescribed Bisoprolol (extreme fatigue) so stopped that. Still take the Apixaban daily.

Absolutely no side effects now but Doctor confirmed recently it was Persistent Afib and if I was worried about it he would refer me to a Cardiologist for investigation. Well, I'm not that worried but more to the point is the Doctor ? Maybe I should just carry on as I am. I just wondered what other people take for this Afib

mjames1 profile image
mjames1 in reply to Jedburgh

The vast majority of the people here are symptomatic while in afib if they're not taking medication's, so their experiences and treatment do not really pertain to your situation.

I do know someone, however, who had asymptomatic afib with a normal heart rate Which is similar to your case. His afib was also discovered by accident.

He saw an a fib specialist called an electrophysiologist. After doing a exercise stress test, and an echo to make sure his heart was structurally sound, he was given a blood thinner, and told to just go about his life normally. Six months later, he naturally converted back to normal rhythm.

You might seek out an electrophysiologist to see what they say. Hopefully they will evaluate your heart to make sure that the a fib is not causing any damage. Depending on your risk score, they may or may not want to put you on a blood thinner.

The risk of not going to a specialist is being prescribed medications that you do not need as apparently you were previously.

All the best luck moving forward and please check in if you get a new information.

Jim

Jedburgh profile image
Jedburgh in reply to mjames1

Thanks feeling better already ha ha

Desanthony profile image
Desanthony in reply to Jedburgh

I Couldn't get on with any medication for rhythm or rate control beta blockers or calcium channel blockers - they made me feel worse than the Afib. so just get on with apixaban. I now have permanent low rate Afib and have no problems getting on with life and doing everything I did before. Are you experiencing any symptoms from the Afib that mean you can no longer get on with your life as you used to? Do you feel ill? If not then although it may be a good idea to see a cardiologist or prefereably an Electrophysiologist (EP) to regularly get everything checked if you are not experiencing any problems then the treatment you are on should be fine for you. If the waiting list is that long in your area then I would try and refer to a private EP.

Jedburgh profile image
Jedburgh in reply to Desanthony

Thanks, it's good to know that medication is not necessary in every case. I am only taking Apixaban for the condition and have no issues with my health that I know of.

Desanthony profile image
Desanthony in reply to Jedburgh

Further treatment is something to talk through with your Cardio or EP. It may be worth trying a cardioversion to see if this works and gets you back into NSR and you feel much better in NSR then further treatment such as an ablation would be likely to work and keep you in NSR and keep you feeling better. At the beginning I felt better after my cardioversions - even though I was in persistent Afib from diagnosis. I had 3 cardioversions which kept me in NSR for 3 out of 4 years. Missed out on an ablation because of Covid and by the end of all that rigmarole my heart had remodelled itself so any further treatmet was deemed likely not to work. My 3rd Cardioversion kept me in NSR for 15 months. I would keep all options open for the time being and discuss as much as possible with your EP.

Rainfern profile image
Rainfern

Amiodorone can in some instances reduce arrhythmias so presume that’s why this was prescribed. I was on it for a few months for persistent AF prior to a cardioversion and it made no difference to the Afib. Long term side effects can be very nasty but some people here seem to weather it ok. I was prescribed bisoprolol but after discussion with the cardio nurse never took it as my blood pressure is a healthy low and I don’t want it lowering further. So to bring heart rate down and strengthen the beat my EP prescribed digoxin which for some reason is quite out of vogue. I really liked it as I had more energy and was less breathless. Resting heart rate went down from 80s to low 70s. No side effects. I’m in NSR now, post-ablation, but would be happy to take it again if necessary. I believe it’s more normally used as a medicine for so-called heart failure, but my heart is structurally ok. Good luck with your consultation.

By the way, I take it you’re on an anticoagulant?

Jedburgh profile image
Jedburgh in reply to Rainfern

Thanks for this. seem to recall my Mum was on Digoxin wasn't aware it was for heart-related so that's interesting to know. I take Apixaban which is an anticoagulant. I'm in the UK and the NHS waiting list is a joke. Doctor said it could be a few years to get to see a specialist!

Rainfern profile image
Rainfern in reply to Jedburgh

I doubt you’ll need to wait years, but yes, waiting lists are very long. I decided to pay for a private consultation with an EP (electrophysiologist) because even if you wait years on NHS you only get a quick appointment. I needed a long appointment with time to get my questions answered and look at all the options available. And I only had to wait 3 weeks. My EP works across private and NHS. All further treatment was with NHS and I was quite involved in decision making and proactive in getting things moving. In large part thanks to this forum!

Tilly1957 profile image
Tilly1957 in reply to Jedburgh

Like Rainfern, I splashed out and paid for a private consultation. I am glad I did, as it has taken nearly 1 year for an nhs cardiology app to come through. This is to review my meds and way forward. Best £250 I have ever spent(40mins) . All treatment and meds going forward are through the nhs. I can always go back to him, and will only cost £125. I am in nebivolol and he added flecainide daily, plus flecainide &metprolol as a pip. I don’t like the meds, but I can now function better and go back to nsr a lot faster. Ablation due May. If I had waited for my nhs medication review referral, I wouldn’t be seeing anyone until 1st match - was referred last April. Also taje xarelto .

Jedburgh profile image
Jedburgh in reply to Tilly1957

Thanks for this. I am going to do the same. All the best

TopBiscuit profile image
TopBiscuit in reply to Tilly1957

Sounds like you found a good one! I have just been quoted 'up to £300' for 15 minutes through the Royal Brompton Hospital.

Tilly1957 profile image
Tilly1957 in reply to TopBiscuit

He is nhs & private, very keen to keep patients costs down and refers back through nhs for tests etc (unless, of course, someone really wants to pay). Is actually the same guy who diagnosed af for me 8(?) years ago. His bedside manner is excellent. Also, cost depends on area too.

Jedburgh profile image
Jedburgh

Thanks do you need to get the GP involved before going to an EP Ie a referral?

Rainfern profile image
Rainfern in reply to Jedburgh

No need to ask GP, you can just book in privately and medical notes and prescriptions are sent to and from your GP. It would be worth posting a question here asking for advice on checking out a good EP in your area. I believe there’s a list somewhere you can refer to. I went through local Nuffield.

wilsond profile image
wilsond in reply to Jedburgh

.No I didn't. Self refer

Tilly1957 profile image
Tilly1957 in reply to Jedburgh

Sorry for delay in replying, I missed the notification 😪. No, I didn’t need a referral from gp. I found the consultant I wanted to see, phoned the contact number and booked an appointment straight away. The first my gp surgery knew about it was when they received the letter from the consultant after he had seen me.

Jedburgh profile image
Jedburgh

I would like to go direct to an EP like you as long as I don't get Computer Says No

wilsond profile image
wilsond in reply to Jedburgh

Computer nothing to do with it you just select an EP,contact the clinic directly ,book an appointment yourself. Nhs notes are shared on request,and you can go on his/her ngs list afterwards. Circa 150 to 300 seen in few days or weeks

Jedburgh profile image
Jedburgh in reply to wilsond

Thanks very helpful

Thomas45 profile image
Thomas45

I have been in permanent AF for about seven years, after 22 years of paroxysmal AF, ( for the first 8 years it was not treated).I was treated with Flecainide only. I didn't take a beta blocker as I have long-term asthma. Flecainide reduced the episodes of AF to one or two ten minutes episodes a year.

When I was found to be in asymptomatic AF, the Flecainide was stopped, as it was no longer working.

I have accepted that no medical intervention will revert my heart to normal sinus rhythm, and that my AF is Permanent .

My only medication because of AF is anticoagulant, Warfarin being my choice.

Jedburgh profile image
Jedburgh in reply to Thomas45

Thanks, Thomas that's useful information. Seems like Med Free is an option for many

Pommerania78 profile image
Pommerania78 in reply to Thomas45

How long were you on Flecainide? Why do you think it quit working? Thanks.

Thomas45 profile image
Thomas45 in reply to Pommerania78

12 years. I have no medical training so cannot answer your second question.

wilsond profile image
wilsond

Persistent AFib can be treated but the term Permanent AFib relates to the point at which Dr's and patients agree that nothing is now effective and they agree to stop.

Jedburgh profile image
Jedburgh in reply to wilsond

Thanks for that explanation. Not sure which one has been applied to me permanent or persistent. Will need to clarify

Ppiman profile image
Ppiman

No, but I do have two friends with permanent AF who get along well with their condition, one now 90 years old and asymptomatic.

Steve

Letofeyd profile image
Letofeyd

Metoprolol made me so dizzy that I was even disorientated sitting on the sofa. Constantly feeling drunk and unsteady on my feet was very debilitating, so discontinued.Amiodarone was awful for me. It gave me severe, crushing headaches right from the start that never let up. I managed 3 torturous months, in which the Amiodarone didn't even touch my AFib, so then I asked to ditch it. All pain, no gain.

Sotalol was tolerated, so I take that. I just had the Wolf Ohtsuka Procedure in Tokyo, so now I am in the blanking period and expect to be med-free after 3 months.😍

Jedburgh profile image
Jedburgh

Thanks. All the best with the Wolf Ohtsuka Procedure

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I hope you get a heart monitor fitted for 24 hours, also ecg and importantly an ECHO which shows if there are any other structural abnormalities.

I am also in persistent AF but eventually I have got to being controlled by meds - Diltiazem 120mg AM for H/Rate and Bisoprolol 2.5mg for BP. The Rapid AF was controlled.

I can tell you that after Stroke there was no follow up except for Speech and Occupational Therapists.

My Echo continues to show damage structurally so no Cardioversion, Ablation or Arrythmnic meds.

Was it caused by te prolonged rapid day h/beat? the Cardiologist wouldn't tell.

A severe dilation of the left atrium and a corresponding regurgitation in Right Ventricle shows trouble. I have to stop exerting myself to rest during my exercise/normal activities.

I had a embolic stroke due to thyroid cancer caused by the AF activity. Symptoms were excessive sweating and stopping due to exertion. The latter has dropped down to a few seconds.

In my list of banned meds are Ace meds and Metoprolol. Ace Inibrace coughing/ Lopressor losing protein through kidneys. Metoprolol breathless, missing beats, no controlling my rapid H/Beat.

My night avge rate is 47. My now day rate is now 60s (dropped from 88-96 due to losing 6kg).

I'm on PRADAXA 110mg x twice day.

You don't say what side effects you were experiencing. This would be helpful.

Are you on an anti.co-agulant?

cheri jOY 75. (NZ)

Jedburgh profile image
Jedburgh in reply to JOY2THEWORLD49

Thanks for this. Yes to 24hr heart monitor, ECG etc some years back. The only med I am taking is Apixaban for an Anticoagulant. No symptoms but diagnosed persistent Afib.

Ersilia2 profile image
Ersilia2

I’ve just started Bisoprolol and getting side effects,lightheaded and low heart rate,if I don’t get better at 2 weeks of starting, I’ll be ringing the Consultant. They gave me Amiodarone in the hospital only. They told me if the side effects .

.Good luck

2learn profile image
2learn

Hi, agree with mjames1 I think you should have a few tests/scans to check your hearts ok and if it is then ask for annual check up.

MummyLuv profile image
MummyLuv

sounds like all is good for you just on your anticoagulant. Good you are going to see an EP as they will check your heart structure, common for left atrium to swell and if any fibrosis has formed. As your heart isn’t working overtime with a fast heart rate like many of us this is less likely.

Amiodarone is the daddy of heart rhythm meds, but it comes with possible known thyroid implications and so you shouldn’t just be put on without initial blood test monitoring. I was on Amiodarone for 3 months or so over mini maze surgery to hold my heart rate whilst the body adjusted

I was the same as you on bisoprolol, floored me. I was long term persistent afib, I couldn’t tolerate it and was moved on to digoxin which worked better, depending on your age that needs monitoring for liver impact.

I have been in NSR now for nearly 2 years post mini maze, I now just have annual appointments with my EP just to keep an eye.

In my opinion definitely worth seeing a good EP, if you are paying you can pick the best

ScotRun profile image
ScotRun

Thanks, great advice. I'm on the hunt for an EP

MummyLuv profile image
MummyLuv in reply to ScotRun

Richard schilling in London is considered one of the top EPs in the UK. Often rated top. I spoke to him but decided to go down the mini maze route instead. If you are on the hunt for a good EP and don’t mind travelling from where you are look him up and see what you think.

ScotRun profile image
ScotRun in reply to MummyLuv

Thanks, I'm in Scotland (The Borders) and may find an EP in Edinburgh. Spire keeps coming up as a possibility

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